[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]



 
       DOES HIPAA HELP OR HINDER PATIENT CARE AND PUBLIC SAFETY?

=======================================================================

                                HEARING

                               BEFORE THE

              SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS

                                 OF THE

                    COMMITTEE ON ENERGY AND COMMERCE
                        HOUSE OF REPRESENTATIVES

                    ONE HUNDRED THIRTEENTH CONGRESS

                             FIRST SESSION

                               __________

                             APRIL 26, 2013

                               __________

                           Serial No. 113-37


      Printed for the use of the Committee on Energy and Commerce

                        energycommerce.house.gov



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                    COMMITTEE ON ENERGY AND COMMERCE

                          FRED UPTON, Michigan
                                 Chairman
RALPH M. HALL, Texas                 HENRY A. WAXMAN, California
JOE BARTON, Texas                      Ranking Member
  Chairman Emeritus                  JOHN D. DINGELL, Michigan
ED WHITFIELD, Kentucky                 Chairman Emeritus
JOHN SHIMKUS, Illinois               EDWARD J. MARKEY, Massachusetts
JOSEPH R. PITTS, Pennsylvania        FRANK PALLONE, Jr., New Jersey
GREG WALDEN, Oregon                  BOBBY L. RUSH, Illinois
LEE TERRY, Nebraska                  ANNA G. ESHOO, California
MIKE ROGERS, Michigan                ELIOT L. ENGEL, New York
TIM MURPHY, Pennsylvania             GENE GREEN, Texas
MICHAEL C. BURGESS, Texas            DIANA DeGETTE, Colorado
MARSHA BLACKBURN, Tennessee          LOIS CAPPS, California
  Vice Chairman                      MICHAEL F. DOYLE, Pennsylvania
PHIL GINGREY, Georgia                JANICE D. SCHAKOWSKY, Illinois
STEVE SCALISE, Louisiana             JIM MATHESON, Utah
ROBERT E. LATTA, Ohio                G.K. BUTTERFIELD, North Carolina
CATHY McMORRIS RODGERS, Washington   JOHN BARROW, Georgia
GREGG HARPER, Mississippi            DORIS O. MATSUI, California
LEONARD LANCE, New Jersey            DONNA M. CHRISTENSEN, Virgin 
BILL CASSIDY, Louisiana                  Islands
BRETT GUTHRIE, Kentucky              KATHY CASTOR, Florida
PETE OLSON, Texas                    JOHN P. SARBANES, Maryland
DAVID B. McKINLEY, West Virginia     JERRY McNERNEY, California
CORY GARDNER, Colorado               BRUCE L. BRALEY, Iowa
MIKE POMPEO, Kansas                  PETER WELCH, Vermont
ADAM KINZINGER, Illinois             BEN RAY LUJAN, New Mexico
H. MORGAN GRIFFITH, Virginia         PAUL TONKO, New York
GUS M. BILIRAKIS, Florida
BILL JOHNSON, Missouri
BILLY LONG, Missouri
RENEE L. ELLMERS, North Carolina
              Subcommittee on Oversight and Investigations

                        TIM MURPHY, Pennsylvania
                                 Chairman
MICHAEL C. BURGESS, Texas            DIANA DeGETTE, Colorado
  Vice Chairman                        Ranking Member
MARSHA BLACKBURN, Tennessee          BRUCE L. BRALEY, Iowa
PHIL GINGREY, Georgia                BEN RAY LUJAN, New Mexico
STEVE SCALISE, Louisiana             EDWARD J. MARKEY, Massachusetts
GREGG HARPER, Mississippi            JANICE D. SCHAKOWSKY, Illinois
PETE OLSON, Texas                    G.K. BUTTERFIELD, North Carolina
CORY GARDNER, Colorado               KATHY CASTOR, Florida
H. MORGAN GRIFFITH, Virginia         PETER WELCH, Vermont
BILL JOHNSON, Ohio                   PAUL TONKO, New York
BILLY LONG, Missouri                 GENE GREEN, Texas
RENEE L. ELLMERS, North Carolina     JOHN D. DINGELL, Michigan
JOE BARTON, Texas                    HENRY A. WAXMAN, California (ex 
FRED UPTON, Michigan (ex officio)        officio)
  


                             C O N T E N T S

                              ----------                              
                                                                   Page
Hon. Tim Murphy, a Representative in Congress from the 
  Commonwealth of Pennsylvania, opening statement................     1
    Prepared statement...........................................   115
Hon. Steve Scalise, a Representative in Congress from the State 
  of Louisiana, prepared statement...............................   117

                               Witnesses

Leon Rodriguez, Director, Office for Civil Rights, Department of 
  Health and Human Services......................................     3
    Prepared statement...........................................     5
    Answers to submitted questions...............................   118
Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine, 
  Director, Institute for Bioethics, Health Policy, and Law, 
  University of Louisville School of Medicine....................    13
    Prepared statement...........................................    15
    Answers to submitted questions...............................   131
Richard Martini, M.D., Professor of Pediatrics and Psychiatry, 
  University of Utah School of Medicine, Chair, Department of 
  Psychiatry and Behavioral Health, Primary Children's Medical 
  Center.........................................................    37
    Prepared statement...........................................    39
    Answers to submitted questions...............................   140
Carol Levine, Director, Families and Health Care Project, United 
  Hospital Fund..................................................    43
    Prepared statement...........................................    45
Gregg Wolfe, Father of a son with mental illness and substance 
  abuse..........................................................    58
    Prepared statement...........................................    62
Edward Kelley, Father of a son with mental illness...............    70
    Prepared statement...........................................    73
Jan Thomas, Family impacted by HIPAA.............................    84
    Prepared statement...........................................    86
Deven McGraw, Director of the Health Privacy Project, Center for 
  Democracy and Technology.......................................    88
    Prepared statement...........................................    90
    Answers to submitted questions...............................   143


       DOES HIPAA HELP OR HINDER PATIENT CARE AND PUBLIC SAFETY?

                              ----------                              


                         FRIDAY, APRIL 26, 2013

                  House of Representatives,
      Subcommittee on Oversight and Investigations,
                          Committee on Energy and Commerce,
                                                    Washington, DC.
    The subcommittee met, pursuant to call, at 9:02 a.m., in 
room 2123 of the Rayburn House Office Building, Hon. Tim Murphy 
(chairman of the subcommittee) presiding.
    Members present: Representatives Murphy, Gingrey, Scalise, 
Harper, Olson, Gardner, Griffith, Johnson, Long, Ellmers, 
Cassidy, DeGette, Braley, Schakowsky, Butterfield, Tonko, and 
Green.
    Staff present: Carl Anderson, Counsel, Oversight; Mike 
Bloomquist, General Counsel; Sean Bonyun, Communications 
Director; Matt Bravo, Professional Staff Member; Karen 
Christian, Chief Counsel, Oversight; Andy Duberstein, Deputy 
Press Secretary; Brad Grantz, Policy Coordinator, Oversight and 
Investigation; Debbee Hancock, Press Secretary; Brittany 
Havens, Legislative Clerk; Robert Horne, Professional Staff 
Member, Health; Peter Kielty, Deputy General Counsel; Andrew 
Powaleny, Deputy Press Secretary; Alan Slobodin, Deputy Chief 
Counsel, Oversight; Sam Spector, Counsel, Oversight; Tom 
Wilbur, Digital Media Advisor; Jean Woodrow, Director, 
Information Technology; Phil Barnett, Democratic Staff 
Director; Stacia Cardille, Democratic Deputy Chief Counsel; 
Brian Cohen, Democratic Staff Director, Oversight and 
Investigations, Senior Policy Advisor; Elizabeth Letter, 
Democratic Assistant Press Secretary; Stephen Salsbury, 
Democratic Special Assistant; Roger Sherman, Democratic Chief 
Counsel; and Matt Siegler, Democratic Counsel.

   OPENING STATEMENT OF HON. TIM MURPHY, A REPRESENTATIVE IN 
         CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA

    Mr. Murphy. Good morning. We are here today, the Oversight 
and Investigation Subcommittee of the Committee on Energy and 
Commerce, for a hearing entitled, ``Does HIPAA Help or Hinder 
Patient Care and Public Safety?''
    As there is a classified briefing as well as votes this 
morning, we are going to waive opening statements in order to 
get right to the witness testimony. We will allow members to 
submit their opening statements for the record.
    A hearing last month addressed issues raised after the 
Newtown tragedy. Some of the witnesses told the subcommittee 
how HIPAA had hindered their ability to care and treat for 
loved ones. We are going to hear from a number of folks, 
government representatives, professionals, parents, experts, 
family members. It is an important issue.
    Members, the reason we are here is members of Congress 
themselves are experts and knowledgeable on many of these 
issues, so we appreciate your attention to this. We are here to 
ask questions and learn the facts about HIPAA from those who 
are knowledgeable of them and remind everyone that we need to 
maintain decorum in the committee room. Disruptions will not be 
tolerated and people doing so will be discharged if needed.
    We also are asking members to stick closely to the time 
limit as we go through.
    Ms. DeGette. Will the Chairman yield just briefly?
    Mr. Murphy. Yes. I yield briefly.
    Ms. DeGette. The Chairman and I have agreed to put all of 
the opening statements in the record, and I think that is 
appropriate given this classified briefing which was just 
scheduled yesterday out of respect to the witnesses, many whom 
have come from around the country. The Chairman and I decided 
we really wanted to hear from the witnesses.
    I will say, Mr. Chairman, though, that this is really an 
important topic, the HIPAA issues, particularly as they relate 
to gun violence, but it is also important if we are being asked 
to get the U.S. militarily or otherwise involved in Syria and 
this classified briefing is with the Secretary of State, so on 
behalf of everybody I want to apologize to the witnesses. Some 
of us may be coming in and out, but we will read the testimony, 
and we will make sure we know what is going on.
    So thank you very much, Mr. Chairman.
    Mr. Murphy. I appreciate it. I want to also let members 
know I communicated with Majority Leader Eric Cantor last 
evening, and he is having his staff working on providing a 
special briefing for any members who remain through this 
committee.
    You are aware that the committee is holding an 
investigative hearing. I say this to the witnesses, Mr. 
Rodriguez and Mr. Rothstein, and when doing so, we have the 
practice of taking testimony under oath. Do you have any 
objections to testifying under oath?
    Thank you.
    The Chair then advises you that under the rules of the 
House and the rules of the committee you are entitled to be 
advised by counsel. Do you desire to be advised by counsel 
during your testimony today?
    Thank you.
    In that case will you please rise and raise your right 
hand? I will swear you in.
    [Witnesses sworn.]
    Mr. Murphy. Let the record show the witnesses have answered 
in the affirmative. You are now under oath and subject to the 
penalties set forth in Title XVIII, Section 1001 of the United 
States Code. You may each now give a 5-minute opening 
statement, but let me introduce the witnesses for today's 
hearing.
    On the first panel we have Mr. Leon Rodriguez. Mr. 
Rodriquez is the Director of the Office for Civil Rights at the 
Department of Health and Human Services. He oversees the 
administrative operations of the civil rights division.
    We also have Professor Mark Rothstein. He has a joint 
appointment at the University of Louisville, School of Law, and 
the School of Medicine. He also holds a Herbert F. Boehl Chair 
of Law and Medicine and is the founding director of the 
Institute for Bioethics, Health Policy, and Law at the 
University of Louisville School of Medicine.
    Gentlemen, you may begin. Make sure your microphone is on 
and pulled close to your mouth. Thank you. You may begin.

TESTIMONY OF LEON RODRIGUEZ, DIRECTOR, OFFICE FOR CIVIL RIGHTS, 
DEPARTMENT OF HEALTH AND HUMAN SERVICES; AND PROFESSOR MARK A. 
    ROTHSTEIN, HERBERT F. BOEHL CHAIR OF LAW AND MEDICINE, 
  DIRECTOR, INSTITUTE FOR BIOETHICS, HEALTH POLICY, AND LAW, 
          UNIVERSITY OF LOUISVILLE SCHOOL OF MEDICINE

                  TESTIMONY OF LEON RODRIGUEZ

    Mr. Rodriguez. Good morning, Mr. Chairman, Ranking Member 
DeGette, and members of the subcommittee. It is an honor for me 
to be here today in my capacity as Director of the Office for 
Civil Rights at the U.S. Department of Health and Human 
Services, and I thank you for calling a hearing on this very 
important topic.
    As HHS's enforcement agency for civil rights and health 
privacy rights, OCR handles enforcement, policy development, 
and education for compliance with laws in those areas. Our 
office plays an important role in ensuring that an individual's 
sensitive health information remains private and secure and 
that individuals are able to exercise important rights with 
respect to their health information.
    One of the underpinnings of HIPAA is that optimal 
healthcare depends for many patients on their trust that their 
health information remains confidential. HIPAA also ensures 
that health information can flow for important and necessary 
purposes such as patient treatment, obtaining payment for 
health services and protecting the country's public health and 
safety. I have often said that HIPAA is meant to be a valve and 
not a blockage, and that it is above all meant to maximize the 
welfare and interests of thepatients.
    As such, I look forward to discussing the existing 
flexibilities within HIPAA. HIPAA recognizes the vital role 
that family members play in supporting patients with 
significant illness, both physical and mental. I have read the 
family testimonies that were placed in the record and am 
heartbroken by them, and so, therefore, take seriously this 
committee's desire to get to the right answer on these issues.
    To directly address the concerns that underlie this hearing 
I will discuss the paths that HIPAA offers for providers to 
disclose information received during treatment to protect the 
health and safety of their patients.
    For example, HIPAA permits personal health information to 
be used or disclosed without an individual's authorization for 
health treatment and payment and for the business operations of 
covered entities. HIPAA also permits other uses and disclosures 
for certain public health activities, for law enforcement 
purposes, and to avert serious and imminent threats to health 
or safety.
    I would like to talk about disclosures to family members 
and friends of patients. This is an important area. Ordinarily 
if a patient does not object to information being either shared 
in front of family members or friends or with family members or 
friends, HIPAA provides a clear avenue for disclosure in those 
cases.
    Additionally, if a patient is incapacitated--and when I say 
incapacitated, we mean for that word to be given its full 
ordinary meaning--healthcare providers may still communicate 
with family and friends of the patient if the provider 
determines, based on professional judgment, that doing so is in 
the best interest of the individual. And this is, I think, an 
important point to underscore. HIPAA is meant to revolve around 
the professional judgment of the provider as to what is in the 
best interest of the patient. It is not meant to supplant that 
judgment.
    And so, for example, a nurse can discuss a patient's 
medical condition in front of the patient's sister, who 
accompanies her to an appointment. If a patient is unconscious 
or otherwise incapacitated, the doctor, again, can make that 
judgment to share information with family members.
    Similarly, HIPAA recognizes that professional codes, state 
laws, and professional standards of care recognize a duty and 
authority to warn of situations where a patient may pose a 
danger to themselves or others or may have disclosed 
information indicating a threat by another to either themselves 
or a third person.
    In those cases where there is a serious and imminent risk 
of harm to health or safety, HIPAA has a clearly-recognized 
exception for disclosure. And when I say an imminent risk to 
health or safety, it is not simply the scenario of an 
individual going out to commit a violent crime, but, in fact, 
it covers a number of possible scenarios that a healthcare 
provider, particularly a mental healthcare provider, may 
encounter.
    We take our obligations to educate providers and patients 
on these flexibilities seriously, and it is for this reason 
that we in the Administration took the initiative in January 
after the tragic events in Newtown to issue a letter to the 
Nation's healthcare providers clarifying these important 
points.
    Finally, I want to talk for just a moment about the nature 
in which we utilize our enforcement authorities. We focus 
primarily on longstanding broad-based security threats. We have 
never taken enforcement action because a provider has decided 
in the best interests of a patient to disclose information to a 
related party.
    Thank you, Mr. Chairman, thank you, Ranking Member, thank 
you, members of the committee.
    [The prepared statement of Mr. Rodriquez follows:]

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    Mr. Murphy. Thank you, Mr. Rodriguez.
    Mr. Rothstein, you are recognized for 5 minutes.

                 TESTIMONY OF MARK A. ROTHSTEIN

    Mr. Rothstein. Mr. Chairman.
    Mr. Murphy. Pull the microphone close to you, if you would.
    Mr. Rothstein. Mr. Chairman.
    Mr. Murphy. Still not on. Is it on? Pull it real close.
    Mr. Rothstein. OK. How about there?
    Mr. Murphy. There we go.
    Mr. Rothstein. Thank you.
    Mr. Murphy. These are government mikes so during the 
sequester they are down 20 percent.
    Mr. Rothstein. As is my voice, I am afraid.
    Mr. Chairman and members of the subcommittee, my name is 
Mark Rothstein. I am on faculty of the University of 
Louisville, but I am testifying today in my individual 
capacity, and again, let me apologize for my laryngitis. It is 
seasonal I am afraid.
    In my testimony this morning I want to make the following 
three points. First, the HIPAA privacy rule is essential to 
patient care and public health and safety, second, exceptions 
to the privacy rule permit disclosure of health information for 
important public purposes, and third, additional measures could 
enhance the effectiveness of the privacy rule.
    First, ever since the Hippocratic Oath, medical codes of 
ethics have established the duty of physicians to maintain the 
confidentiality of patient health information. Without 
assurances of confidentiality, patients will be reluctant to 
divulge sensitive information about their physical and mental 
health, their behavior, and lifestyle that could be vital to 
the individual's treatment. The privacy rule codifies this 
crucial requirement of confidentiality which is necessary for 
ethical and effective individual healthcare.
    Health privacy laws also are essential to the protection of 
public health and safety. To illustrate, this afternoon I will 
be returning home to Louisville. At lunch, I do want my cook or 
server to be someone who was reluctant to get treatment for 
hepatitis A because of privacy concerns. I do not want as my 
taxi driver someone with chronic tuberculosis who was afraid to 
get ongoing health treatment. I do not want my flight safety 
placed at risk by an air traffic controller with a mental 
health problem or a pilot with substance abuse who was deterred 
from obtaining behavioral health care. Confidentiality 
protections, therefore, serve to advance both the patient's and 
the public's interest.
    Although we were all deeply saddened by the recent horrific 
loss of life caused by some violent, mentally-unstable 
individuals, we should appreciate the potential consequences if 
new, excessive mental health reporting requirements were 
enacted. Each year in the United States there are over 38,000 
suicides and over 700,000 emergency room visits caused by self-
inflicted harms. An estimated 26.2 percent of the people in the 
U.S. have a diagnosed mental disorder in any given year. Any 
steps to lessen confidentiality protections or mandate the 
unnecessary disclosure of mental health information could lead 
vast numbers of individuals to forego mental health treatment 
and potentially result in significantly more suicides, self-
inflicted harms, and untreated mental illness.
    Second, the privacy rule specifically permits a covered 
entity to disclose 12 types of health information of importance 
to the public, and therefore, the privacy rule does not hinder 
public safety. Among these 12 categories are disclosures for 
public health activities, about victims of abuse, neglect, or 
domestic violence, for law enforcement, and to avert a serious 
threat to health or safety.
    The 12 public purpose exceptions are permissive. The 
privacy rule does not require any disclosures. The disclosure 
obligations arise from other sources such as state public 
health reporting laws. The effect of the public purpose 
exceptions is to permit otherwise-required disclosures without 
violating the privacy rule.
    Third, for the last 10 years, inadequate health 
professional and patient outreach and education programs have 
led to a lack of understanding of the privacy rule by many 
affected individuals and covered entities. A common problem is 
that some uses and disclosures permitted by the privacy rule 
are not allowed by some covered entities, perhaps out of 
ignorance or an over-abundance of caution.
    The 2013 promulgation of the omnibus amendments to the 
privacy rule make it an appropriate time for HHS to start a new 
program of public and healthcare provider education and 
outreach.
    In conclusion, the privacy rule, I believe, is essential to 
individual healthcare and public health and safety. Additional 
efforts to increase understanding of the privacy rule by the 
public and covered entities, as well as revising some of the 
public purpose exceptions, will enhance the effectiveness of 
the privacy rule.
    I thank you for the opportunity to testify this morning.
    [The prepared statement of Mr. Rothstein follows:]

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    Mr. Murphy. I thank both the gentlemen. Let me just ask 
some questions. I recognize myself for 5 minutes.
    During this subcommittee's March 5 forum on severe mental 
illness, Pat Milam, father of a son with a serious mental 
illness, pointed to HIPAA as a significant obstacle to getting 
his son the help he needed. Mr. Milam explained that one of his 
son's doctors judged him to be, ``of extremely high risk for 
suicide or other bad outcome,'' more than once and yet failed 
to share this information with Pat or his wife. Matthew Milam 
tragically took his own life only months later while living 
with his parents, and it was only after Matthew's death that 
the Milams were able to obtain their son's medical records.
    Is this an example where HIPAA worked as intended, Mr. 
Rothstein?
    Mr. Rothstein. No, but if HIPAA were followed to the 
letter, that would have permitted the disclosure under----
    Mr. Murphy. Mr. Rodriguez, you agree with that, too? Does 
HIPAA bar a physician or a licensed provider from revealing 
health information to the parents of a young adult who is 
living with their parents? Yes or no, Mr. Rodriguez?
    Mr. Rothstein. No.
    Mr. Rodriguez. Under some circumstances it might. In most 
circumstances there would be paths for disclosures to those 
parents.
    Mr. Murphy. Paths for disclosure. Does it allow physicians 
to provide information to parents if the young adult is 
receiving care through the parent's healthcare plan up to age 
26 as envisioned by the Affordable Care Act? So if they are 
still dependents, or is it an age? Can you tell me where that 
cutoff is?
    Mr. Rodriguez. Yes. The cutoff in terms of the patient's 
ordinary ability to object to the provider's disclosure is the 
age of majority, whatever it happens to be in a particular 
State.
    Mr. Murphy. So in Pennsylvania it is age 14. A 14-year-old 
could decide whether or not that information is to be 
disclosed. In other States it may be 18.
    Mr. Rodriguez. Yes. I would assume ordinarily it would be 
18.
    Mr. Murphy. Are either of you familiar with the term, 
anosognosia, what that term means?
    Mr. Rodriguez. I am aware of it, Chairman, because I 
actually read the majority memorandum for this hearing. 
Certainly going back to the discussion of serious incapacity 
and the discussion of serious and imminent risk of harm, 
certainly situations where that condition either renders the 
patient to be in a condition of incapacity or where the 
consequences of that condition being unaddressed are a serious 
risk of imminent harm to health or safety--again, it doesn't 
mean going out and committing a gun crime. It can mean a 
variety of different things that could be extremely harmful to 
that patient.
    Then, yes, in those cases a provider could disclose without 
consent.
    Mr. Murphy. Mr. Rothstein, would you agree?
    Mr. Rothstein. I agree. Yes.
    Mr. Murphy. It sounds like from what I read from your 
testimony and what you have said here that we may find that a 
lot of providers are misinterpreting or over-interpreting the 
laws on HIPAA which prevent them from disclosing things to 
patients. Is that what you are suggesting is happening here?
    Mr. Rodriguez. Chairman, we have observed in a variety of 
our areas of enforcement that there is anxiety about our rules 
in all the wrong places. If you look at where we have taken 
enforcement action, it has been focused on institutions that 
have had longstanding failures to protect the security of all 
of their patients' information.
    HIPAA was designed to respect the provider's judgment as to 
their patients' best interests. I think that is often, 
unfortunately, misunderstood, and that is one of the reasons we 
provided that clarification.
    Mr. Murphy. Let me ask this because it gets to the crux of 
the matter of why we are here today, and we are going to hear 
some testimony from some professionals, some experts, and some 
parents.
    What if the provider decides not to share the memo or the 
information, whatever, for those reasons? What if the patient 
doesn't sign a release? A patient themselves does not even 
recognize they have a problem, and the parents even go to court 
and say, we would like to have these records reviewed. In some 
cases the hospital staff says, I can't release these records if 
a judge says we can, and the judge asks the patient, the 
patient says, no, and yet a condition may still exist that the 
patient is at risk for suicide or harm to themselves for not 
following their treatment.
    What then?
    Mr. Rodriguez. One thing to also keep in mind in answering 
this question is HIPAA's not the only relevant body of law. So 
we are also talking about professional ethical standards, both 
the American Psychiatric Association and the American 
Psychological Association impose clear duties of 
confidentiality and create exceptions as we do, and, in fact, 
our rules are built around both those ethical duties and State 
law duties such as, for example, that in the Tarasoff v. 
California Board of Regents case. Clearly in the kinds of 
scenarios where you describe where a provider is aware of, for 
example, the risk of suicide, a very clear situation where we 
are talking about serious risk of imminent harm, HIPAA does not 
stand as a barrier, even in the absence of the patient's 
consent to disclosure.
    Mr. Murphy. I am going to cut myself----
    Mr. Rodriguez. Anybody who can help the patient. That is a 
critical element here. To that person who can lessen or remove 
the threat to the patient. If that is the parents, then that is 
where the disclosure can go.
    Mr. Murphy. Thank you. I am out of time. I am going to go 
now to Ms. DeGette for 5 minutes.
    Ms. DeGette. Thank you, Mr. Chairman.
    I think we can all agree that HIPAA provides many important 
protections for people's medical privacy, and we have a history 
of bipartisan agreement that people need to be able to keep 
their sensitive health information private, and so I think we 
would agree with our witnesses on the importance of HIPAA but 
also we need to recognize that in many of these mass shootings 
that we have seen and in many mental illness situations where 
someone is a risk to themselves and to their families, there 
are clearly some problems with how providers and institutions 
are interpreting HIPAA obligations. Because it seems to me if 
someone is a danger to themselves or to others, that would be 
up to the provider's decision to advise the parents or other 
responsible adults.
    Is that correct, Mr. Rodriguez?
    Mr. Rodriguez. Yes. It would----
    Ms. DeGette. And Mr. Rothstein, is that correct?
    Mr. Rothstein. Yes. I agree with that.
    Ms. DeGette. So I just want to say I am not going to 
blindly defend HIPAA, but I think we should be very, very 
careful when we contemplate changes to that statute. We heard 
in March about providers' interpretations of HIPAA and how they 
can be barriers to treating not just the mentally but also the 
physically ill.
    I myself, as a parent, I have a diabetic child, and even 
before she was 18 years old sometimes we had a hard time 
getting providers to give us information. That is not because 
of HIPAA. It is because the providers misinterpreted HIPAA, and 
so when we hear these tragic stories today, and I am hoping I 
will get back for that, I think that we need to really take 
that seriously, but we need to look at ways to educate 
providers.
    In the aftermath of the murder of 32 people at Virginia 
Tech we learned that HIPAA interpretations prevented mental 
health professionals from appropriately sharing information. 
Misinterpretations of HIPAA and other private laws were also 
identified by the GAO and by President Obama's Gun Violence 
Task Force as an obstacle to reporting individuals who should 
be barred from gun ownership to the next background check 
system.
    And so, Mr. Rodriguez, I think you would say HHS has tried 
to be responsive to these concerns that interpretations of 
HIPAA and other privacy rules have created obstacles. Is that 
correct?
    Mr. Rodriguez. That is correct. That is why we----
    Ms. DeGette. And, in fact, you sent a letter out on January 
15 of this year to health providers around the country, trying 
to delineate exactly what HIPAA says. Correct?
    Mr. Rodriguez. Yes, we did.
    Ms. DeGette. Now, tell us why you sent this letter.
    Mr. Rodriguez. We thought that because of all the concerns 
about the interaction between situations where a provider is 
aware of information indicating danger to either the patient or 
others, and some of the events that we have been hearing about 
in recent years, that it was important to remind providers of 
the--of both the duty, the permissions under HIPAA, but also to 
remind them to consult with their applicable ethical standards 
and their applicable State laws that clearly do give them a 
pathway to report in these kinds of situations.
    Ms. DeGette. Thank you, and HHS recently issued an advanced 
notice of proposed rulemaking to solicit public comments on 
HIPAA and its perceived barriers to the reporting of 
individuals to NICS due to mental health concerns. Is that 
correct?
    Mr. Rodriguez. That is correct.
    Ms. DeGette. And can you explain very briefly why this 
advanced notice of rulemaking is necessary and what information 
you are trying to collect?
    Mr. Rodriguez. Sure. In most States reporting as to 
disqualifying information for NICS actually comes from the 
judicial system, which is not covered under HIPAA. We are aware 
at least generally about some examples--New York State until 
recently was one very clear example of a State where reporting 
occurred from entities that are, in fact, covered by HIPAA, and 
reporting would ordinarily have been prohibited by HIPAA. We 
want to understand where and to what extent HIPAA is a barrier 
in those cases and take any appropriate steps to----
    Ms. DeGette. Thank you.
    Mr. Rodriguez [continuing]. Remove those barriers.
    Ms. DeGette. OK. Just one last question.
    Now, the Affordable Care Act, it extended insurance to 
dependents up to the age of 26. Correct? Yes or no?
    Mr. Rodriguez. That is correct.
    Ms. DeGette. Yes, but it didn't say that individuals up to 
the age of 26--maybe that this a good question for you, Mr. 
Rothstein. It didn't say individuals up to an age of 26 were 
still considered legally dependents of their parents because 
they are getting health insurance. Is that correct?
    Mr. Rothstein. Yes.
    Ms. DeGette. And, in fact, the provision of the Affordable 
Care Act didn't even talk about HIPAA, did it?
    Mr. Rothstein. Correct.
    Ms. DeGette. That is correct. OK. Thank you.
    Mr. Chairman, I would ask unanimous consent to put this 
January 15, 2013, letter from the Director to providers into 
the record.
    Mr. Murphy. Without objection we will----
    Ms. DeGette. Thank you very much.
    [The information appears at the conclusion of the hearing.]
    Mr. Murphy. Thank you. The gentlewoman's time has expired.
    I now recognize Dr. Gingrey from Georgia for 5 minutes.
    Mr. Gingrey. Mr. Chairman, thank you, and thank you very 
much for calling this very important hearing. You know, I am 
sitting here thinking as a physician member of the subcommittee 
that it is kind of ironic, isn't it, that this law passed in 
1996, HIPAA. It almost sounds like the Hippocratic Oath, which, 
of course, in the first place, do no harm. It really in a way 
has nothing to do with the Hippocratic Oath, which is hundreds, 
if not thousands, of years old, but in a way it does touch on 
that in the first place, do no harm, in regard to how you treat 
a patient but also this information sharing because if it is 
not done correctly, great harm, there is potential for great 
harm, not only for the patient but to the general public. So I 
just think that I find that sort of ironic.
    Mr. Rodriguez, when was the last time that the Office of 
Civil Rights under HHS updated the Healthcare Provider's Guide 
to the HIPAA Privacy Rule posted to the OCR Web site? And how 
about the Patients' Guide? Same thing.
    Mr. Rodriguez. Congressman, Doctor, we are updating 
guidance on a routine basis as different issues comes up. As 
you know, we issued a major rule that profoundly affects both 
consumers and providers in January of this year, and so we have 
been busy posting updates relevant to that rule.
    Mr. Gingrey. That was that January 25 rule?
    Mr. Rodriguez. That is correct. Similarly, when we 
identified the concerns about gun violence after the Newtown 
shooting, we took immediate and decisive steps to put up this 
reminder about the manner in which HIPAA interacts with the 
duties to warn. We are updating our information on a very----
    Mr. Gingrey. Well, these guides answer common questions 
about HIPAA. Correct?
    Mr. Rodriguez. That is correct.
    Mr. Gingrey. And do you ever receive input from either the 
general public or the healthcare providers about the 
effectiveness of these updates?
    Mr. Rodriguez. We do. We speak routinely to both consumer 
groups and provider groups. My door is always open. In fact, I 
took the initiative this morning to connect with several of the 
family members here today because I want to hear from them. I 
want to know these concerns and make sure that we are getting--
--
    Mr. Gingrey. I am going to come right back to you, but Mr. 
Rothstein, are you familiar with these guides? Do you have any 
sense of how effective they are?
    Mr. Rothstein. Well, I am not sure how effective they are, 
but I can comment generally about the Outreach in Education 
Program and with all due respect to OCR and HHS, I think we 
have a major problem in this area. If you read the regulations, 
there are ample places where these kinds of issues, the problem 
of notifying parents, the problem of notifying individuals who 
are at risk, is spelled out. But HIPAA is a very misunderstood 
regulation. It is misunderstood by the public, it is 
misunderstood by healthcare providers and----
    Mr. Gingrey. Well, let me interrupt you to say that I fully 
agree with you, and as a practicing physician for a long time 
before I came here 10 years ago, I knew that, and I think, in 
fact, I wonder if some physicians don't hide behind if I just 
move onto the patient, not want to be bothered with an aunt or 
an uncle or a cousin, in regard to questions about their loved 
one. I hope that doesn't exist too much, but, I mean, it is 
something that we need to think about.
    Let me go back to the Director of the Office of Civil 
Rights, Mr. Rodriguez. How does OCR measure? Now, I think when 
I was talking to you just a second ago, it sounded like it was 
more anecdotal from your perspective, but how does OCR measure 
whether the clarifications that you referenced January 25 of 
this year, indeed, how do you measure how they are working? For 
example, have the number of privacy rule complaints filed under 
the various complaint categories been trended downwards with 
every further clarification, hopefully this most recent one 
from OCR? Does OCR keep track of this? Do you think this will 
be a helpful metric to track in judging the performance, your 
performance of your outreach and education efforts concerning 
the privacy rule?
    Mr. Rodriguez. So answering the first part of your 
question, Congressman, the truth is our caseload has remained 
steady, and in fact, has grown slightly over the years since we 
commenced enforcement. We've received something in the order 
of, I think, approximately 80,000 complaints since we first 
began receiving complaints, and the amount has been fairly 
steady over the years.
    Part of what is going on here is HIPAA's still new, you 
referenced 1996, but our rules really didn't become final until 
2003 and 2005. And so there has been a learning curve over the 
years both for consumers and providers to understand what HIPAA 
requires and what it authorizes, and we often emphasize that 
HIPAA's flexible and scalable, meaning that it is really meant 
to be designed for a very wide variety of healthcare scenarios.
    I agree generally that our caseload is certainly an 
indicator. I don't think it is the only indicator of how well 
folks are understanding the requirements. I certainly agree 
with that proposition. I think there have been surveys. I am 
not able to speak to them specifically right now in terms of 
where patient concerns are, where provider concerns are, but we 
certainly do hear a lot of anecdotal information as you 
described.
    Mr. Gingrey. Mr. Chairman, thank you for allowing the 
witnesses to answer, and I yield back.
    Mr. Murphy. Thank you.
    Mr. Gingrey. Thank you both.
    Mr. Murphy. I now recognize the gentleman from Iowa, Mr. 
Braley, for 5 minutes.
    Mr. Braley. Thank you, Mr. Chairman, for holding this very 
important hearing which deals with the ongoing struggle between 
patient privacy and protecting the public safety, and these are 
not easy issues to deal with, but I think part of the 
challenges we faced and part of the concerns of family members 
who have been dramatically impacted by our inability to solve 
this problem is that these particular provisions you have been 
talking about, Mr. Rodriguez, are commonly known as the Duty to 
Warn Provisions, and yet to most of us who understand duty to 
warn, a duty is a mandatory obligation, not a permissive 
requirement. And even though I understand completely your 
explanation of how this permissive disclosure is then subject 
to State laws dealing with mandatory disclosure, I think many 
healthcare professionals, particularly mental healthcare 
professionals, look at the HIPAA language, see that it is 
permissive, and that is the end of the story for them.
    And I would like to hear from both of you how are we 
educating the public and more specifically mental healthcare 
providers about this bridge between supposedly mandatory Duty 
to Warn Provisions that are actually permissive and State law 
requirements that might be mandatory?
    Mr. Rodriguez. So that is one of the issues that I think 
the drafters of our rule in this area were attempting to 
tackle, because we are talking about, I think you are correct, 
we are talking about both duties and authorities to warn. In 
other words, when we are talking about the Tarasoff example, 
there we are talking about an actual duty to warn or to 
protect.
    Mr. Braley. But based on State law. Not based upon the 
language of HIPAA.
    Mr. Rodriguez. Correct. HIPAA is really meant to get out of 
the way of those duties and authorities and to clear a wide 
enough lane for those duties and authorities to be utilized and 
implemented by providers and for professional judgment to 
really be the hallmark of when disclosure occurs.
    Mr. Braley. Well, one of the first forums we had on this 
subject one of our witnesses was Pete Early, who wrote this 
book about his son's journey through the mental health system 
and criminal justice system, and he noted appropriately in here 
that in 1963, President Kennedy signed a National Mental Health 
Law that authorized Congress to spend up to $3 billion in the 
coming decades to construct a national network of community 
mental health centers, and then notes on the next page that 
Congress never got around to funding or financing community 
mental health centers.
    So the process of deinstitutionalization moving from State 
mental health institutions to community-based mental healthcare 
that was supposed to happen instead became a process where more 
and more people wound up in the criminal justice system, and we 
now have law enforcement officers who often are providing 
frontline mental healthcare. And I think for the families of 
some of the victims who have experienced firsthand the loss of 
a loved one because of our inability to bridge this gap, 
especially when a patient is accompanied to a treatment 
facility by law enforcement officials who have a duty to 
protect the public safety and they aren't provided information 
about the release of that patient, even though there may be a 
prior history of threats, how do we get to the point where we 
are protecting the patient's privacy and at the same time 
making sure that we aren't blocking the disclosure of 
information that can protect the public?
    Mr. Rodriguez. I certainly think we need to continue our 
educational efforts, and, again, that is why that initiative--
which, incidentally, was widely covered in professional media--
of the reminder we sent in January was something that was 
really embraced by the mental health profession as a reminder 
to them that at least HIPAA, I can't account for all the 
professional codes and State laws that also apply here, but at 
least HIPAA in those kinds of situations where a danger is 
posed does not stand as an obstacle to providers acting in the 
interest of the patient and of public safety.
    I think it is also worth noting, you know, that there is a 
countervailing concern that patients who fear that their 
information will not be confidential won't get treated, and I 
think that is why, Congressman, when you talked about that 
delicate and difficult balance, that is the balance that both 
our regulations and healthcare providers I believe are trying 
to strike.
    Mr. Braley. Mr. Rothstein, one of the other concerns that 
Mr. Early raises is that if we have a child in a divorce 
proceeding or a custody proceeding, the number one role of the 
court system is to decide what is in the best interest of the 
child. That is their principle focus. And yet when we have 
adult patients who are getting mental health treatment who may 
or may not be able to make decisions about their own treatment 
needs, oftentimes the legal criteria are not what is in the 
best instance of the patient but protecting the patient's 
wishes from a legal standpoint and that often the advocates 
focus on that rather than getting the best treatment option 
that would benefit them in society.
    What are the obstacles we need to face to deal with that 
problem?
    Mr. Rothstein. It is a very difficult question. The 
immediate test would be whether the individual is competent, 
and if the individual is competent, healthcare providers tend 
to overlook all the other tests. If the individual is competent 
and a threat to self or others, then that overrules the 
competency issue. If the individual is incompetent, unable to 
make reasoned decisions about his or her mental health, then 
the confidentiality protections would not apply.
    Mr. Braley. Thank you.
    Mr. Murphy. The gentleman's time has expired.
    I now recognize the gentlewoman from North Carolina, Ms. 
Ellmers, for 5 minutes.
    Mrs. Ellmers. Thank you, Mr. Chairman, and thank you for 
holding this very, very important mental health hearing, 
especially in lieu of the forum that we had a couple of weeks 
ago with the family members. You know, that was a very 
important, emotional, and revealing discussion that we had, 
which brings me to some of the questions that I have because I 
have practiced in healthcare. I am a nurse. My husband is a 
general surgeon, and you know, HIPAA can sometimes get in the 
way, and as healthcare professionals I would say that you would 
typically err on the side of protecting the patient's 
confidentiality and yourself--as a healthcare professional.
    Mr. Rodriguez, I would like to ask you since the 
implementation in 2003, according to my information HHS has 
received over 79,920 HIPAA complaints. What is the procedure 
when a complaint comes in?
    Mr. Rodriguez. Sure. The first thing we do is assess 
whether, in fact, it is a HIPAA complaint at all or whether the 
complaint is about some other issue outside of our 
jurisdiction. If we determine that we do have jurisdiction, we 
then conduct an inquiry.
    Mrs. Ellmers. OK.
    Mr. Rodriguez. Conduct an investigation into the 
allegations. If we determine that there were violations of 
relevant HIPAA requirements, we then ordinarily work with the 
entity--I am going to talk about the exception in terms of our 
Monetary Enforcement Program--work with the entity to correct 
whatever the deficiencies are in their practices in order for 
them to go forward and be compliant----
    Mrs. Ellmers. OK.
    Mr. Rodriguez [continuing]. In those areas. Now, through 
HITECH as you know, we received enhanced monetary enforcement 
authorities, particularly directed at concerns about the 
security of electronic health information.
    Mrs. Ellmers. OK.
    Mr. Rodriguez. And so, since HITECH was passed, our 
enforcement has specifically focused on security rather than 
the use and disclosure issues that we have been talking about 
here, and has, in fact, grown, and in fact, it has been a 
priority of mine to grow our enforcement to protect the 
confidentiality of electronically----
    Mrs. Ellmers. OK.
    Mr. Rodriguez [continuing]. Maintained information.
    Mrs. Ellmers. Yes. Very important. Mr. Rothstein, can you 
tell me, since implementation of HIPAA have there been 
significant law suits filed? Is that something that you would 
have information about with alleged HIPAA violations? And when 
I say lawsuits, I mean against healthcare professionals.
    Mr. Rothstein. Right. Well, HIPAA does not provide for a 
private cause of action.
    Mrs. Ellmers. OK.
    Mr. Rothstein. There have been a few lawsuits alleging 
invasion of privacy or some other----
    Mrs. Ellmers. OK. So it would have to be----
    Mr. Rothstein. But they refer to HIPAA violations, but 
HIPAA doesn't provide for those.
    Mrs. Ellmers. OK, and there again, I get back to the issue 
of healthcare providers who would err on the side of less 
information is probably better--just, always looking out for 
the patient and, unfortunately, always having to cover your own 
self. And that is one of my areas of concern with HIPAA, 
because I do believe it is a gray area and is left up to too 
much interpretation.
    So, Mr. Rodriguez, my final question here, I have a little 
over a minute, do you have a sense of how often hospitals and 
staff actually go over the HIPAA regulations and make sure that 
they are up to date? Is that done on an annual basis?
    Mr. Rodriguez. It is, Congresswoman, variable. We actually 
did an audit program last year, which is another program 
required under HITECH, and this was a pilot, and we found a 
wide range. We found some institutions that take those 
obligations seriously, do them on a regular, annual basis, 
ensure that new employees are trained, but there are also many 
providers where that is not the case. The compliance is all 
over the board.
    Mrs. Ellmers. OK. There again, unfortunately, so many 
things fall on this information. I think this is definitely one 
of those areas. So thank you very much, and I yield back the 
remainder of my time.
    Mr. Murphy. I now recognize Mr. Butterfield for 5 minutes.
    Mr. Butterfield. Thank you, Mr. Chairman. Let me begin by 
thanking both of you for your testimony today. I thank you very 
much. It is obvious that you all are both well prepared.
    I will address this question to Mr. Rodriguez. Mr. 
Rodriguez, following the Newtown tragedy President Obama took 
appropriate action by clarifying to healthcare providers in 
writing their duty to warn law enforcement authorities of 
threats of violence.
    First of all, is that true?
    Mr. Rodriguez. That is true. I signed the letter, but it 
was at the President's direction.
    Mr. Butterfield. OK. That was going to lead me to my 
question was it a letter or an executive order, or what was it? 
It was a letter from your office.
    Mr. Rodriguez. The letter was really a reminder of existing 
duties under the law and also of the Administration's emphasis 
that these authorities to warn and these duties to warn should 
be fully exercised to protect the public safety.
    Mr. Butterfield. And has that action had any impact as far 
as you can determine?
    Mr. Rodriguez. It has had impact in the sense that there 
has been renewed discussion about these issues. There was 
extensive industry media coverage of the letter, and so, 
therefore, we believe, based on that, that the reminder reached 
the folks it needed to reach, which are particularly those 
mental health providers.
    Mr. Butterfield. And about how many letters actually went 
out from your office?
    Mr. Rodriguez. They were posted on our Web site and then 
disseminated by both press release and through various listers 
that HHS has.
    Mr. Butterfield. Can you describe, Mr. Rodriguez, 
additional ways the Health Information Technology, HIT, for 
Economic and Clinical Health Act, which we passed in the 
Recovery Act, has improved privacy and security requirements 
for patient records?
    Mr. Rodriguez. Sure. I appreciate that question. First of 
all, it has done so by bringing business associates within the 
ambit of the privacy and security worlds. That is those 
contractors who serve healthcare providers, and in fact, often 
come into possession of large quantities of protected health 
information. We now directly regulate them as we directly 
regulated healthcare providers before that. It increases the 
penalties for violation of HIPAA, which we have used 
extensively for security violations, and it also establishes 
requirements that breaches of health information need to be 
reported to our office, to the affected patients, and in cases 
of larger breaches, also be reported to prominent media that 
will be seen by the affected patients.
    Mr. Butterfield. All right. My third question follows. Can 
you describe the training that medical professionals receive to 
ensure they adhere to HIPAA?
    Mr. Rodriguez. Sure. To my knowledge, and I wouldn't 
consider this a comprehensive answer, but certainly training on 
HIPAA is offered at many professional conferences. In fact, we 
actually have prepared a series of videos that have been 
posted, and several more that will be posted on Medscape, 
including some that are, by the way, relevant to the topic we 
are discussing here, that discuss various aspects of the 
privacy and security rules.
    We are particularly concerned about smaller providers who 
don't necessarily have the resources of larger institutions. So 
we are looking for opportunities to reach them.
    I also understand that there are medical school curricula 
that touch on these issues as well.
    Mr. Butterfield. It is my understanding that healthcare 
providers covered by HIPAA must notify patients if the privacy 
of their health information is breached. What methods are used 
to notify those individuals?
    Mr. Rodriguez. They should ordinarily be notified in 
writing, and, again, we also in certain cases provide for 
notification through the media.
    Mr. Butterfield. All right. Finally, Mr. Rothstein, Dr. 
Rothstein, even with HIPAA protections we have heard that 
privacy concerns can cause individuals to actually avoid 
treatment. I am not sure I knew that.
    Could increasing information sharing through HIPAA cause 
fewer individuals to seek treatment?
    Mr. Rothstein. That certainly is a concern, especially 
individuals who have sensitive information that they are 
worried will be disclosed. Yes.
    Mr. Butterfield. All right. Mr. Chairman, I yield back.
    Mr. Murphy. I thank the gentleman.
    Dr. Cassidy is not a member of the Oversight and 
Investigations Subcommittee but has asked for an opportunity to 
join us and without objection we will allow him 5 minutes to 
ask questions. Dr. Cassidy.
    Mr. Cassidy. Thank you, Chairman Murphy.
    Gentlemen, I am a practicing physician, will see patients 
this Tuesday morning, and I have a sense that you two are 
incredibly bright and well-versed in this law and is totally 
divorced from the reality of an ER physician seeing 20 patients 
in a shift, and at 3:00 a.m. there is a person who comes in 
with these issues.
    I will just tell you, and I will also tell you that 
physicians fear the Federal Government. They understand that if 
the Federal Government comes after them and grabs them in their 
long legal arm, the physician may ultimately win, but she is 
destroyed in the process.
    Now, I listened to what you say how this would allow 
certain forms of communication, but I will also say when I read 
that the maximum penalty is 1.5 million, when the physician is 
having their in-service on HIPAA, that is what they remember, 
and when they understand that it is permissible not to give 
information, but you may get in trouble if you do, I can tell 
you that guy, that gal seeing the patient at 3:00 a.m. with 20 
patients doesn't have your expertise, but what they do have are 
examples of physicians who had been grabbed by the law and not 
let loose until every one of their personal resources had been 
exhausted.
    Now, that is just a comment borne out of incredible 
frustration with this sense that the Federal Government is this 
benign entity that the American people have no reason to fear. 
Indeed, it has great reason to fear, and so people act 
cautiously.
    Now, that said, after my rant, I apologize, let me ask a 
couple things. We say that the doc may communicate with the 
family if there is imminent danger, but what if the patient is 
non-compliant? Can the family say to the mother of the adult 
child who lives with her, your son is not taking his medicines, 
and therefore, we need to do something about that? Can the 
physician do that?
    Mr. Rodriguez. So, again, we go back to the idea of serious 
risk to health or safety. So we are not talking about imminent 
danger in the sense of somebody violent going out, and it 
certainly includes that scenario, but it is much broader than 
that. So if the patient's health would be seriously, adversely 
affected and the provider's communication of that information 
to the parent would provide a way of eliminating or at least 
reducing that threat, then HIPAA provides them clear authority.
    Mr. Cassidy. So the specific example, the patient is 
bipolar, and I am a little rusty on my psyche so this medicine 
may no longer be used, but assume that they are on Lithium, and 
their Lithium level shows that it is low, the patient is not 
taking their drug. We have documented fact. Can the doc say to 
the mom, your son is not taking his Lithium?
    Mr. Rodriguez. You also might have heard the beginning of 
my testimony. We were also talking of cases of incapacity.
    Mr. Cassidy. Of what? I am sorry.
    Mr. Rodriguez. Of incapacity.
    Mr. Cassidy. No. I am not saying they are incapacitated 
because when that level falls, they don't immediately become 
incapacitated. They are just on the potential verge of being 
but they can still seem sane.
    Mr. Rodriguez. Well, then I think the pathway is--if the 
result of that would be serious and imminent threats to that 
individual's health, then HIPAA provides a path for those 
communications.
    Mr. Cassidy. There seems to be a little bit of wiggle room 
there. The guy could get back on his dose and bring it back up 
to snuff. I am not sure the physician would find a safe harbor 
in that kind of answer.
    Mr. Rodriguez. Well, I think the greater safe harbor, 
Congressman, would be this: We have received 80,000 complaints 
since we began enforcing. Only 12 of them have resulted in 
monetary penalties.
    Mr. Cassidy. I accept that, but what you are talking about 
is a fellow seeing patients 20 in a shift at 3:00 a.m. in the 
morning who doesn't have your expertise. That is the reality, 
and I can tell you that what you hear in that in-service is 
that if you violate HIPAA, they are going to turn you every 
which way but loose. I can tell you that is what the in-service 
is because I have been there.
    Mr. Rodriguez. I would love to see those in-services 
because they are not consistent with our enforcement history.
    Mr. Cassidy. Secondly, it says here that the patient 
healthcare provider is not permitted to share personal 
information with the family or friends of an adult who tells 
the provider not to do so. What if that patient is incompetent? 
What if they actually at this point in time are not lucid? They 
think that there is black helicopters circulating and that 
their mom is the pilot of one of them.
    Mr. Rodriguez. And that is why I mentioned that, certainly 
in cases of incapacity, and certainly incapacity can include a 
situation where a patient is far from lucid, then in those 
cases there is also a basis for----
    Mr. Cassidy. Now, sometimes lack of lucidity is in the eye 
of the beholder. I will tell you that there is a Wall Street 
Journal article about William Brice or Bruce, I forget which, 
in which the young man was released and went out and killed his 
mother with a hatchet. And so clearly he was considered lucid 
enough to be released.
    I am sorry. I am out of time. I apologize. I will have to 
forego. I yield back. I am sorry.
    Mr. Murphy. The Chair is going to ask that everybody be 
permitted 1 minute of additional questions, and then we will 
get onto our next panel, recognizing we have votes coming up 
soon. So we will do 1 minute.
    Mr. Rodriguez, as you are aware, States have said, 
confusion over HIPAA has prohibited them from sharing 1.5 
million records with the National Instant Background Check 
System of persons who have been involuntary committed to mental 
health treatment or deemed mentally incompetent by a court of 
law and are, therefore, prohibited from owning a firearm. Our 
committee sent a letter to HHS on February 13 asking about 
HIPAA interfering with this NICS list. I note that HHS has now 
announced it would be soliciting feedback on HIPAA reform.
    Why do you believe States are not uploading those records?
    Mr. Rodriguez. I certainly have heard of HIPAA as one of 
several different reasons, so I don't understand HIPAA to be 
the only reason. I know certainly in the case of New York State 
their reporting was coming out of, or their reporting would 
have had to have come out of, what was a HIPAA-covered entity 
and therefore, reporting would have been prohibited, and we are 
now looking to eliminate that kind of barrier. Beyond New York 
I don't know if there are others.
    Mr. Murphy. Can you get us a written response to the 
subcommittee on this issue clarifying it?
    Mr. Rodriguez. Sure.
    Mr. Murphy. Thank you. Mr. Braley, 1 minute.
    Mr. Braley. Mr. Rothstein, we were talking earlier about 
some of the challenges faced with the incredible burdens placed 
on law enforcement officials, our penal systems to provide 
front-line mental healthcare. This has been a dramatic shift in 
what has happened since Congress passed legislation trying to 
promote community-based mental health.
    So we now have this long learning experience, and people 
who care about the rights of the mentally ill, like I do, 
people who care about protecting public safety, like I do, want 
to know what we have learned from these experiences as we move 
forward and try to create a balanced system that is protecting 
the public and the rights of patients to get the best possible 
treatment when obviously we have been failing them. What can we 
do about that?
    Mr. Rothstein. Well, Mr. Braley, that is a difficult 
question. On the one hand we need to increase the funding and 
wherewithal of community mental health services. That is for 
sure. What we can address at this hearing today is the 
importance of getting out the message of what HIPAA does and 
does not require.
    One of the problems overall is that HIPAA was intended to 
be a floor above which medical ethics and State law would take 
place, but in many areas, including mental health areas, it is 
the floor, and there is nothing else above it.
    Mr. Murphy. If you can offer a written response, too, we 
would appreciate that, because we are going to need more 
detail.
    Dr. Gingrey, you are recognized for 1 minute.
    Mr. Gingrey. Mr. Chairman, thank you. I don't know if I can 
do this in a minute but quickly.
    Mr. Rodriguez, on January 25, 2013, HHS published a final 
rule that makes, and I quote, ``significant modifications to 
marketing by third parties to patients for purposes of 
identifying potential beneficial health opportunities for 
patients.'' For instance, many drug companies use third parties 
to help identify patients in need of care for purposes of 
inclusion in clinical trials. Some of these patients, including 
those from my own district, have chronic illnesses for which no 
other treatment option exists.
    Would this service still be allowed if such a company, 
third-party company, did not first get the patient's consent?
    Mr. Rodriguez. It is a long answer, so I will take 
advantage of the opportunity to offer it in writing.
    Mr. Gingrey. All right. Thank you, and I yield back.
    Mr. Murphy. Dr. Cassidy, 1 minute.
    Mr. Cassidy. Mr. Rothstein, I am little concerned. You 
mentioned the point there is 26 percent of the people who have 
a diagnosed mental disorder in 1 year, but really if you talk 
about serious mental illness it is really a much smaller 
percentage.
    Mr. Rothstein. Of course.
    Mr. Cassidy. And those are the folks who are incompetent 
that, I mean, believe me, I speak from personal experience of 
family members and of friends who have been in this situation. 
Don't you think it is a little disingenuous to say, OK, here is 
a group that truly are out of it as opposed to this 26 percent 
that have situational depression or such like this.
    Wouldn't it be more honest to kind of focus upon that SMI 
group for their sake, their family's sake as a unique group?
    Mr. Rothstein. Oh, absolutely, but the point I was trying 
to make was, if legislation were enacted that made all mental 
health records more discloseable----
    Mr. Cassidy. So you would accept maybe SMI under very 
guarded circumstances----
    Mr. Rothstein. Of course.
    Dr. Cassidy [continuing]. As opposed to the broader 26 
percent of the population?
    Mr. Rothstein. That is correct, but I am worried about the 
discouragement of the 26 percent.
    Mr. Cassidy. I would just say, someone who has got bipolar 
or schizoaffective oftentimes does not have that insight, and I 
think we have to be kind of honest about that. They have an 
acute break, and they have no insight whatsoever. As a guy who 
has worked with such patients and who has had close people 
associated.
    I yield back. Thank you.
    Mr. Murphy. Thank you. Mr. Rodriguez, Mr. Rothstein, thank 
you so much for being with us today, and we appreciate your 
availability in the future to respond to questions.
    As they are stepping up, we ask the folks to get ready for 
the second panel. I would like to make an announcement.
    As we continue on with our previous hearing after Newtown 
and also this one on HIPAA, this committee is exploring issues 
of a wide range that deal with mental illness and proper 
treatment, et cetera, because of our concerns.
    I want to make it very clear, all members are aware of 
this, but certainly members of the audience and people who may 
be watching this also, at no time does this committee at any 
time communicate that those with mental illness are those who 
are responsible for violence. We recognize that victims, that 
they are actually 11 times more likely to be victims of violent 
crime than the non-mentally ill, and the vast majority of 
people with mental illness are not violent. It is very 
important we understand that.
    Could the next panel please take their seats, and we will 
move forward then?
    As you sit down I will be introducing you. On the second 
panel we have Dr. Richard Martini. He is a Professor of 
Pediatrics and Psychiatry at the University of Utah School of 
Medicine and the Chair of the Department of Psychiatry and 
Behavioral Health at the Primary Children's Medical Center in 
Utah. For full disclosure I want to say that when I was on the 
staff at Children's Hospital in Pittsburgh he was one of my 
students. How time flies.
    We also have Ms. Carol Levine. She directs the United 
Hospital Fund Families and Health Care Project, which focuses 
on developing partnerships between healthcare professionals and 
family caregivers, especially during transition in healthcare 
settings.
    Next we have Mr. Gregg Wolfe. Mr. Wolfe is the father of a 
son who suffered from mental illness and substance addiction.
    Then we have Mr. Edward Kelley. Mr. Kelley is also a father 
of a son with mental illness.
    And Mr. Braley, would you like to also recognize your guest 
today?
    Mr. Braley. Yes. Thank you, Mr. Chairman. I am thrilled to 
have one of my constituents testify today, Jan Thomas, from 
Parkersburg, Iowa. She has a story to tell about this gentleman 
who was featured in Sports Illustrated after he was gunned down 
by a former student. He was the NFL national high school coach 
of the year with four of his former players playing in the 
National Football League, and Jan has an important story to 
share with us about these issues.
    Mr. Murphy. Thank you and finally we have Ms. Deven McGraw. 
Ms. McGraw is the Director of the Health Privacy Project at the 
Center for Democracy and Technology.
    As you all are aware, the committee is holding an 
investigative hearing, and when doing so, has a practice of 
taking testimony under oath. Do any of you have any objections 
to testifying under oath?
    The Chair then advises that under the rules of the House 
and the rules of the committee you are entitled to be advised 
by counsel. Do you desire to be advised by counsel during your 
testimony today?
    All answer negatively. In that case would you all please 
rise and raise your right hand, and I will swear you in.
    [Witnesses sworn]
    Mr. Murphy. The Chair recognizes all of the participants 
answered in the affirmative. You are now under oath and subject 
to the penalties set forth in Title XVIII, Section 1001 of the 
United States Code. You may each now give a 5-minute summary of 
your written testimony.
    We now recognize Dr. Martini for 5 minutes. Make sure your 
microphone is on and pulled close. Thank you.

TESTIMONY OF RICHARD MARTINI, M.D., PROFESSOR OF PEDIATRICS AND 
   PSYCHIATRY, UNIVERSITY OF UTAH SCHOOL OF MEDICINE, CHAIR, 
    DEPARTMENT OF PSYCHIATRY AND BEHAVIORAL HEALTH, PRIMARY 
CHILDREN'S MEDICAL CENTER; CAROL LEVINE, DIRECTOR, FAMILIES AND 
HEALTH CARE PROJECT, UNITED HOSPITAL FUND; GREGG WOLFE, FATHER 
   OF A SON WITH MENTAL ILLNESS AND SUBSTANCE ABUSE; EDWARD 
KELLEY, FATHER OF A SON WITH MENTAL ILLNESS; JAN THOMAS, FAMILY 
  IMPACTED BY HIPAA; AND DEVEN MCGRAW, DIRECTOR OF THE HEALTH 
      PRIVACY PROJECT, CENTER FOR DEMOCRACY AND TECHNOLOGY

               TESTIMONY OF RICHARD MARTINI, M.D.

    Dr. Martini. Good morning, Chairman Murphy, members of the 
subcommittee. I also want to say I am also an immediate past 
Board Member of the American Academy of Child and Adolescent 
Psychiatry, who paid for my travel here today. Thank you for 
inviting me to come and to speak with you about HIPAA and its 
implications of clinical practice and to participate in this 
discussion. Throughout my testimony I will be reviewing patient 
summaries that are based upon my clinical experience but that 
do not include easily-identifiable information.
    Decisions about the release of psychiatric information are 
certainly more straightforward when the patient is a minor and 
not emancipated. Parents or primary caregivers are involved in 
the process, are available not only to support the patient, but 
also to guide them into psychiatric care. Young patients do not 
typically recognize the nature or extent of their behavioral 
and emotional problems, and this is one reason why child and 
adolescent psychiatrists, as well as other pediatric mental 
health professionals, are trained to involve families in 
diagnosis and treatment. We also know that this improves 
outcome.
    All pediatric specialties struggle with the transition of 
patients from adolescence into young adulthood, from a period 
of dependence to a period of almost complete autonomy. Many are 
not prepared for the responsibility, particularly those 
patients that experience chronic medical illnesses, 
developmental delays, and psychiatric disorders. Families have 
provided a framework for their care and for many aspects of 
their life.
    One of my patients, a former patient with a mild form of 
autism, developmental delay, and an anxiety disorder was 
determined to move out of the home once he was employed. The 
parents knew, however, that he could not manage his money, that 
he was emotionally reactive when faced with new experiences, 
and he really could not track his medications. Nevertheless, he 
did not want his parents involved in routine care. It forced 
the parents to go to court, state that their son was not able 
to care for himself, and must be dependent. Unfortunately, the 
subsequent ruling in their favor was counter to our goals in 
psychiatric treatment, and it derailed his progress in therapy.
    Psychiatrists spend a lot of time negotiating 
communications between parents and their children, and we don't 
want to discourage anyone from accessing care, specifically 
those who will not seek treatment if they believe that someone 
will contact or involve their parents. However, the application 
of HIPAA regulations should be a negotiation with several 
options available to both the clinician and the patient. A 
patient of mine in his early 20s suffered from a long history 
of congenital kidney disease. He was in and out of the 
hospital, usually in the company of his mother. He came into 
treatment because he was angry and depressed over the 
circumstances of his disease and his subsequent organ 
transplantation. I wanted to involve the mother in therapy as a 
support, but he refused because he was concerned about how 
disappointed she would be given everything that they had gone 
through together. He was in treatment for about a year, and he 
was on antidepressant medications but dropped out of treatment 
because it was too difficult. Two years later, I ran into his 
physician who told me that he discontinued his kidney 
medications, went into renal failure, and died.
    Psychiatrists should be able to both respect the 
individuality of the adolescent or young adult under the legal 
protection of HIPAA and use the strengths of the family when 
necessary to support treatment. I recognize that allowing more 
communication and less privacy for an adult patient at risk for 
a serious mental illness is a significant change in the intent 
of the law, but must we wait for a patient to be considered at 
risk for imminent harm to self or others before seeking help 
from parents or family?
    Rules about confidentiality certainly affect situations 
that are relatively more common among adolescence and young 
adults, like going to college. Parents are told that even 
though they are going be paying the bills, they will not have 
access to any medical or psychiatric information without the 
student's permission. One such patient with a history of 
congenital heart disease and ongoing depression wanted to go 
away to college. Her parents wanted her to stay close to home. 
She prevailed, but within 3 months of going to school, she 
began to deteriorate both medically and psychiatrically. The 
Student Health Center knew that she was ill but without her 
permission could not contact the parents. If this patient had a 
really serious disorder with immediate consequences, the family 
may not find out about it until they receive a bill some 30 
days after the event. If there is a bias in these situations, 
should it be toward parental involvement more than away from 
it?
    Mental health professionals strive to do what is in the 
best interest of the patient, while preserving his or her right 
to privacy and protection under the law. The basis for civil 
commitment and family communication regardless of the patient's 
wishes has been risk of harm to self or others. I suggest that 
this standard be reexamined with the goal of involving families 
whenever possible.
    Thank you, Mr. Chairman.
    [The prepared statement of Dr. Martini follows:]

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    Mr. Murphy. Thank you, and Ms. Levine, you are recognized 
for 5 minutes.

                   TESTIMONY OF CAROL LEVINE

    Ms. Levine. Chairman Murphy, members of the committee, 
thank you very much for inviting me here today. I am at the 
other end of the age spectrum. I work with family caregivers of 
older adults who are with multiple chronic illnesses, and I 
think the importance of my experience for your deliberations is 
that the misinterpretations of HIPAA which we have heard about 
from Mr. Rodriguez and Mr. Rothstein are far more pervasive 
than the specific questions of mental illness.
    There are about 42 million Americans who are taking care of 
their chronically-ill older parents or other relatives, and I 
can't tell you how many times I hear from family caregivers who 
have a parent in the hospital, and the family member is 
expected to do a wound care, multiple medications, monitor 
machines, make all the care coordination in the community, and 
when you ask about what do I need to know to do this, they say, 
well, I can't tell you because of HIPAA. And that is just 
simply wrong and why does it happen? Because of the two 
features that have already been mentioned.
    There is this training that emphasizes the scary aspects of 
HIPAA. It is often done in a way that if you say anything, you 
are going to be in big trouble. That--and if the training 
doesn't say that, then the informal communication among 
healthcare providers, particularly from the mid-level staff, it 
is not necessarily physicians but nurses, social workers, 
others, terrified that they are going to get sued, they are 
going to lose their job. Meanwhile, laptops lie all over the 
place. They are not paying attention to the actual security of 
this information.
    The second reason, and I think this is very pervasive, also 
alluded to, HIPAA has become a very convenient excuse to avoid 
difficult conversations with families. It takes time, it is 
sometimes uncomfortable, it has really nothing to do with 
privacy of the patient's information. It has to do with I 
don't--why am I--why do I have to talk to this daughter? Why 
can't I just tell the patient? Well, fine, if the patient is 
totally able to understand, but an 85-year-old woman with 
congestive heart failure, moderate dementia, 55 other 
medications and so forth, just cannot absorb that information.
    So I think that what we really need is far more education 
on a balanced level. I think it is instructive that our next, 
United Hospital Fund's Next Step in Care Web site, guides for 
family care, the most downloaded guide is the one to HIPAA. So 
people are confused, and they are looking for information. And 
I think that hospitals, the covered entities, wherever they 
are, need to be encouraged to provide understandable 
information to their patients, to the families, to everyone 
they deal with. You go to a hospital now, you get a piece of 
paper to sign or several pieces of paper, you can barely 
understand. I think only Mr. Rothstein and Mr. Rodriguez and 
several members of the committee here would actually be able to 
understand it, and mostly it is about what we could do with 
your information. It is not about protecting the patient's 
interests at all.
    I think my ultimate question is always whose interests are 
being protected? Is it the patient's interests? Is it the staff 
members' interests in not getting into trouble? I appreciate 
that. Or is it the institution's interests in not making any 
kind of--not being, also not being in trouble, and those are 
valid, but they should never override the good clinical care, 
the importance of good communication that older people, younger 
people, everyone needs to get the best possible clinical care. 
So it is a very pervasive problem. It goes beyond what you are 
specifically asking about, but I think in all it is a kind of 
waterfall. Once it starts, it keeps going, and we continue to 
hope for more clarification.
    Thank you.
    [The prepared statement of Ms. Levine follows:]

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    Mr. Murphy. Thank you, and Mr. Wolfe, you are recognized 
for 5 minutes.

                    TESTIMONY OF GREGG WOLFE

    Mr. Wolfe. Good morning, Chairman Murphy and members of the 
Oversight Committee. My name is Gregg Wolfe, CEO of Kaplan, 
Leaman, and Wolfe Court Reporting and Litigation Support and 
Federal Official Court Reporter for the Eastern District of 
Pennsylvania.
    I am very thankful for the invitation extended to me so 
that I may testify to address the necessary and dire need to 
change the HIPAA law regarding minors and legally emancipated 
adults who either have a mental disorder, disability, or drug 
and/or alcohol addiction. I will set forth the reasoning for 
the exception to our valuable HIPAA law, which will have a 
positive impact on our society.
    My son, Justin, was a gregarious, affectionate, caring, 
compassionate, and intelligent young man whose life came to a 
sudden end on December 19, 2012, from a heroin overdose at the 
very young age of 21.
    Justin had attended Drexel and Syracuse Universities for 
his freshman and sophomore years respectively, carried a 3.0 
GPA, but each year ended poorly due to aberrant behavior. 
Justin had been seeing therapists since he was 15 \1/2\ due to 
anxiety, OCD, and ADHD.
    He was placed on Adderall when he was almost 17 years old. 
Unlike physical illness, mental illness has a much longer 
maturation and duration until one discovers the effects and 
results with which to treat and possibly cure.
    In 2012, Justin told his mother that he was addicted to 
Percocets and Oxycontin. She, in turn, took him to our primary 
care physician without my knowledge, per Justin's request. At 
that time, Justin apprised the doctor of his addiction, but 
also, when his mother was not present in the room, he stated 
that he had been using heroin for a few months prior to that 
date.
    Justin had asked that I not be apprised of any of those 
substances and did not want his mother being informed of his 
heroin usage. Without the heroin usage, the doctor expressed 
dire concern to Justin's mother and told her to take him 
immediately to a recommended crisis center for treatment. 
However, upon departing the office, Justin convinced his 
mother, through his drug-manipulative behavior, to take him 
instead to a Suboxone doctor he knew of, which she did.
    Justin would not allow his mother into the treatment room. 
There Justin admitted to using heroin for the previous year, 
and he was prescribed Suboxone.
    Two months later, against Justin's wishes, I was only 
informed of his Percocet addiction and implored him to enter 
into drug rehabilitation treatment. Justin was working two jobs 
during this time, with little time to attend treatment. 
Additionally, he convinced his mother and I the Suboxone was 
helping him with his recovery.
    As another month passed, Justin was residing in his college 
apartment, and he finally hit rock bottom. We finally gave him 
an ultimatum, and he entered intensive outpatient treatment for 
5 weeks that summer. Once in rehab, I contacted the intake 
director to inquire about his progress. I was informed that he 
could not disclose any information under the HIPAA regulations. 
I was extremely frustrated as I could not be apprised of my 
son's condition.
    During Justin's 5-week rehabilitation, I sent him to see an 
experienced psychiatrist weekly, which ensued until his 
ultimate demise this past December. I explained to the 
psychiatrist his history with abuse, for which he tried to 
counsel Justin, as well as to prescribe medication for his 
depression, anxiety, and OCD. I later learned, however, upon 
Justin's passing, that he had not disclosed his heroin 
addiction to the psychiatrist, except to say that he had tried 
it once.
    Upon Justin's passing, his depression and OCD medication 
were found untouched in his apartment. Oddly, he continued to 
take his anxiety medication. Justin returned to school last 
fall at Temple University where he appeared to be doing well. 
He even joined AEPI, a wonderful fraternity, where he pledged 
and was fully supported by the brotherhood.
    However, Justin obviously was terribly and secretly 
addicted to heroin, in addition to having mental disorders. He 
died of an accidental heroin overdose just a few weeks later.
    Though doctors knew since May, 2011, no one in our family 
was aware that Justin was using heroin, a lethal and insidious 
drug. Everyone was in shock and disbelief when we found out. 
Nevertheless, it was too late.
    I have confronted numerous parents, and nine out of ten 
people are not aware that snorting heroin is an option, which 
is how Justin used the drug, not by injection. Most are also 
shocked to learn that heroin is only $5 to $10 a bag.
    It was alarming to learn that it is actually cheaper to buy 
a bag of heroin on the street than it is to purchase Percocet 
and Oxycontin. Even kids from affluent suburban neighborhoods 
like my son traveled to dangerous places like Camden, NJ, and 
North Philadelphia in Pennsylvania to buy drugs. Justin sold 
some of his personal belongings and items stolen from his 
mother, pawned his computer on several occasions, and actually 
sold his Suboxone and Adderall medication, which I learned 
after the fact by reading his text messages.
    I hereby request an exception be added to HIPAA allowing 
parents of minors with a mental disorder or addiction, who 
maintain legal residency in their parents' homes, living under 
the auspices of their parents' care, and who are under their 
parents' health insurance coverage as specified by President 
Obama, until the age of 26, access to that minor's medical 
records for the following reason: prevention of harm to 
individuals and to society.
    One. Any type of addiction or mental disorder can be life 
threatening to not only one's self but to society as a whole as 
indicative of the Newtown Massacres, Columbine, the Aurora 
shootings, to name just a few.
    Justin was non-violent and would never intentionally hurt a 
soul, but unintentionally his life cut short destroyed other 
lives including his younger brother, Austin, who is a Type 1 
diabetic, not to mention the individuals to whom he sold his 
Suboxone and Adderall. After Justin's passing, Austin told us 
of his reckless disregard when driving as well as when 
conducting some of his activities. Thank God he never hurt 
anyone on the road. I have pictures of Justin's apartment from 
his last months that demonstrate how he resided at college, 
including cigarette burns in his bedding from obviously nodding 
out, which could have set the apartment complex ablaze, 
resulting in injury or death to himself and others.
    Two. Justin's stepfather had taken him assault rifle target 
shooting on occasion for sport. Had we known about his heroin 
addiction, he would not have armed him. Justin had often asked 
my permission to become licensed to buy a gun, which I was 
against despite not knowing about his addiction. However, I am 
forever thankful for not allowing it, especially now that I 
know he was using a mind-bending drug.
    Mr. Murphy. Mr. Wolfe, I know--we are out of time. Can you 
give a final summary, and we can have you come back to that 
element two? Is there a final summary you can give to your 
statement there?
    Mr. Wolfe. I do. I have some very important points to make, 
and it will only take 3 or 4 more minutes.
    Mr. Murphy. I will give you an additional minute. Go ahead.
    Mr. Wolfe. Thank you.
    Three. Justin's lying and manipulation was the result of 
his heroin addiction. I have learned that heroin rewires the 
synapses of the brain so the only way to experience pleasure is 
by doing more of the drug. One becomes numb to all other 
surroundings, emotions, and empathy, thereby resulting in the 
aforementioned behavior.
    Drug-related deaths have risen steadily over the last 11 
years according to a study from the Center for Disease Control. 
In 2010, drug overdoses killed 38,000 people, making drugs a 
more common cause of death than car accidents, guns, or 
alcohol. By comparison, approximately 8,500 homicides were the 
result of firearms.
    According to a 2011, article in Psychology Today, 
accidental drug overdosing is the second most cause of death of 
young people in the U.S., exceeding attributable to firearms, 
homicides, or HIV AIDS.
    According to the U.S. Department of Health and Human 
Services, ``With an immature prefrontal cortex, which does not 
develop until 24 to 25 years old, even if teens understand that 
something is dangerous, they may still go ahead and engage in 
risky behavior. With young adults not having their frontage 
cortex fully developed, those with mental disorders and or 
addictions exacerbate the irrational behavior.''
    In many circumstances, parents know what is best for their 
children, especially if given the appropriate medical 
information with which to exercise judgment and guidance. In an 
effort to help other parents in similar situations, I have 
launched an all-out campaign to the media, President Obama, 
lawmakers in New Jersey, Pennsylvania, and Delaware, and 
Congressional leaders such as yourselves to call attention to 
this issue, and to lobby for adding additional language to 
HIPAA that may help protect troubled young adults and their 
communities from harm.
    Parents are unable to operate effectively in a vacuum, 
without knowledge by healthcare professionals about our drug-
induced, or mentally disabled, legally-aged children who do not 
have the wherewithal to reason or think rationally for 
themselves. The absence of rationale may result in life-
threatening decisions or, as in my son's case, premature death.
    HIPAA has exceptions for public health and safety built-in. 
Item number five under Permitted Uses and Disclosures whereby 
protected health information can be disclosed without an 
individual's consent, including serious threat to Health or 
Safety. Covered entities may disclose protected health 
information that they believe is necessary to prevent or lessen 
a serious and imminent threat to a person or the public, when 
such disclosure is made to someone they believe can prevent or 
lessen the threat, including the target of the threat.'' So it 
should stand to reason language addressing this particular 
safety hazard is prudent and necessary.
    In closing, I am hereby requesting the following language 
be added to this HIPAA exception to avoid ambiguity. Parents or 
legal caretakers of a minor and/or emancipated adult with 
documented drug abuse and/or mental health histories, who 
continue to cover the minor and/or emancipated adult with 
health coverage, and/or continue to support the individual 
financially, will have access to that individual's healthcare 
records until the age of 26 to prevent him/her or society from 
harm.
    Although Justin's family, friends, nor Justin himself, 
could not save him, it is my hope that with change Justin's 
situation can help save millions of young lives in the future. 
Addiction and mental disabilities wreak havoc on our society 
and affect all ethnicities and socioeconomic backgrounds.
    When you look at all the famous and intelligent people 
whose lives were tragically taken due to mental disturbances 
and drug abuse, this country has lost a wealth of talent and 
success which would have been an asset to the growth and 
strength of our Nation.
    Thank you very much.
    [The prepared statement of Mr. Wolfe follows:]

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    Mr. Murphy. Thank you. Mr. Kelley, you are recognized for 5 
minutes. Mr. Kelley.

                   TESTIMONY OF EDWARD KELLEY

    Mr. Kelley. Thank you, Mr. Chairman. I am a father of a 
paranoid schizophrenic son. He was diagnosed at age 14, which 
means for half his life he has had this illness, and I am 
afraid I have some rather harsh news and some points to make 
that are going to fall in line, and I thank Congressman Cassidy 
for his comments because he really gets right to the point.
    My wife and I, upon learning of this diagnosis, embarked 
upon educating ourselves in every aspect of mental health 
treatment, including navigating the system, familiarizing 
ourselves with all the things that are in our way, and then we 
took upon ourselves to go out and educate others, and we have 
done that by teaching classes, we have done that by serving on 
boards, we have done that at speaking engagements, we have done 
it by raising money, and we have also done it by bringing 
people into our home and comforting them and helping them to 
cope.
    And so what I am going to tell you is that we are actually 
ashamed of ourselves as to what we did not know before our son 
became mentally ill, and I would dare say that if the members 
of this committee were to spend a couple of days with someone 
with psychosis, this would fly. You would change things 
tomorrow.
    And so what needs to happen is there needs to be 
recognition that there is a gaping hole, and I want to clarify 
something. There is a difference between anosognosia, which is 
lack of insight, and a psychotic episode. They are two entirely 
different things. Anosognosia can last for long, long periods 
of time and lack of insight, and you refuse treatment, and you 
don't want anybody to help you of any kind, most importantly 
your family members. Not just parents. Brothers, sisters, 
grandparents.
    And so what happens is, you are setting a stage for 
tragedy, literally propping it up because there is this gaping 
hole we are trying to teach or trying to address the needs of 
the severely mentally ill the same way we are the mainstream 
mentally ill population, and it doesn't work. It is illogical.
    My son has thought he has been a U.S. marshal looking for 
his gun. He has thought the aliens were invading him. He 
thought he was a secret agent. He thinks to this day he served 
in two Iraq wars. He has been naked in the snow. He has lived 
homeless under a bridge. He thinks my wife is a stripper and a 
prostitute and that I am a sexual predator. For an entire year 
he did not believe that we were his parents. Now, you tell me 
that this individual can possibly make responsible decisions 
about his care.
    But when he gets into the hospital, and that is a big if 
because sometimes we don't have the recent history from prior 
hospitalizations to give the new hospital. By the way, he has 
been in 14--for 14 years he has been in eight hospitals in four 
counties and one city dozens of different times. And so you 
have this broken chain of treatment.
    So imagine a medical system where physicians and treatment 
providers can't rely on prior history to treat this person. It 
is beyond comprehension, and the other thing that happens is it 
stifles accountability, and now, when I tell you that people 
hide behind HIPAA, I am a 14-year-educated man that has been in 
every situation possible, and it is only the grace of God and I 
think there is a plan out there for my wife and I to somehow 
make a difference, that we are sitting here and that our son 
hasn't killed himself. He is far more likely to kill himself 
than he is to live the rest of his life with his illness.
    And so what we find is that once he gets in the hospital, 
treatment can be delayed or not done at all, and I want to cite 
this example. Our son escaped from a mental health facility 
that was locked. HIPAA was thrown out the window. The hospital 
was calling us, the police were calling us, they were trying to 
pry into his bank records. Every privacy violation you can 
imagine was enacted to try to do this manhunt for my son. They 
found him 4 days later. They dragged him into a state hospital 
in shackles so we can talk about stigma later. Once he was in 
there he verbally assaulted the Administrative Hearing Judge, 
he was put on suicide watch, he was completely out of it, and 
when the time came for his hearing to see whether he should 
receive treatment, we were precluded from participating because 
of HIPAA, and that panel looked me in the eye afterwards and 
said, we can't do it. Our hands are tied.
    Two days later a patient was--a staff member was killed in 
his wing. We don't even want to know what happened, but this is 
what did happen. He was 1 year, 1 year in that facility. The 
abuse, the things that happened to him in that hospital and 
they never, ever let us in. When he was 18, they couldn't live 
without us. When he became 18, we were the enemy. We might as 
well have been strangers on the street. We have doctors who 
have shared with us behind the scenes some things that they 
knew they were going to get in trouble with. They told us, we 
can lose our jobs, but we have to tell you. We are members of 
community, and people know us, so people took chances, but when 
we got outside of our community, there were no changes being 
taken, and we were left out.
    The other thing that happens is imagine somebody who is 
mentally ill being discharged back into real society. Even 
under the best plans with families being involved, it is a very 
difficult process. But take a look at someone who is not part 
of a discharge plan that includes a support network. Our son 
has been released and sent on buses, and we haven't found him 
for weeks, wondering if he is dead.
    HIPAA empowers homelessness. Our son has been gone. No 
money, no clothes that are adequate, nothing. Gone. We look 
around in shelters. Gone. We say why didn't you tell us? We 
can't. HIPAA precludes that. And we say, we thought--and then 
this whole idea, this notion that they have to tell us if it is 
a threat to us. Well, they are not supposed to let him out if 
they are a threat. So they have already decided he is not a 
threat, so they won't let us do it.
    So we search for him, the shelters can't tell that they are 
there, and then the next thing that happens is this person who 
has been released, you don't want this person released like 
this. No support, isolated, in fear, frustrated, angry, and we 
are his first target. Right? We are the first target.
    And so people are being released every day without 
discharge plans involving the family, and they have no way to 
transition back into life, and you don't want that. You don't 
want somebody that has psychosis as a symptom that pops up, and 
by the way, this idea of anticipating and predicting when 
imminent danger is coming, I just fought in the State of 
Maryland for 4 months to try to get that across. Not one person 
on this planet can predict the tipping point of someone with a 
severe mental illness. You can't do it.
    So what you try to do is you rely on who? You rely on the 
people closest to that person, and who is that is the family, 
but the family can't do it. We can't give recent history to the 
next hospital or doctor because we can't get it, so what is 
worse is as each year goes by, we have less ability to help. So 
this idea that we are going to provide information to the 
hospital, it doesn't work, and it is scary.
    So in closing, I would like to say that HIPAA has a lot of 
gaping holes in it. This is the biggest, but if there are ways 
to beat HIPAA, we seek to find it, which is bad. Our son and 
other people's sons and parents deserve the right to be 
collaborative and informed so that they are safe and their 
child is safe.
    Thank you.
    [The prepared statement of Mr. Kelley follows:]

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    Mr. Murphy. Thank you, Mr. Kelley. Ms. Thomas, you are 
recognized for 5 minutes. Thank you.

                    TESTIMONY OF JAN THOMAS

    Ms. Thomas. First of all, I would like to thank Congressman 
Braley for asking me to come to Washington to tell my story, 
and I would like to thank Chairman Murphy and Representative 
DeGette for holding this hearing today on this very important 
subject. My name is Jan Thomas, and the story I have to tell is 
a nightmare that could have prevented. My life has not been the 
same since this tragedy occurred, and it changed the lives of 
my entire family and my community.
    On June 24, 2009, what started out as a normal beautiful 
spring morning ended up being the beginning of a nightmare. 
Shortly before 8:00 am, a 24-year-old former student, Mark 
Becker, walked into our high school weight room, and in front 
of 22 young high school students emptied his gun at close range 
into my husband, Ed. Ed did not survive his injuries, and he 
died on the way to the hospital. He was only 58 years old, and 
he had taught and coached for 36 years.
    In one quick moment, so many lives were impacted forever. 
Our family lost a son, husband, father, grandfather, and 
brother whom we all loved very much. The students in the weight 
room that day, along with our extended community, lost a 
mentor, friend, teacher, and a coach. They lost their sense of 
confidence and security, and the horror of that day will be 
with them forever.
    Innocent youngsters, including our own young grandsons, 
suddenly realized that the world has a dark side. They were 
taught a horrible but truthful lesson that day. Bad things do 
happen to good people for no explainable reason, even when they 
think they are safe.
    Our grandsons were robbed of the deep love of their 
grandpa, and they will miss all of the experiences they could 
have had with him. My sons lost their father, whom they loved 
very much, and I lost my husband and my life partner on that 
day, and we miss him every day.
    But the real tragedy of that day is the fact that it could 
have been prevented. Only 4 days before Ed was murdered, this 
same young man rammed his car into the garage of an 
acquaintance and tried to break his way into the home with a 
baseball bat. When police arrived, he fled in his car, leading 
the law enforcement on a high-speed chase. When the police 
finally apprehended him, he was taken to an area hospital for 
psychological evaluation.
    Less than 24 hours before my husband died, Mark decided he 
didn't want to stay at the hospital, and so not following the 
advice of his doctor, Mark was dismissed.
    No one knew. Law enforcement was not notified, even though 
they had requested that the hospital let them know when he was 
going to be dismissed. The hospital's justification for not 
notifying the law enforcement prior to his release was that 
HIPAA prevented this disclosure. Even his parents did not know 
until Mark himself called them later that evening.
    No one knew that Mark had been released, but Mark's privacy 
had been protected. During the investigation into the murder, 
it was revealed to us that Mark had feelings of animosity and 
resentment toward Ed. We didn't know that. If Mark had come to 
my home that morning and asked where Ed was, I would have 
innocently sent Ed's killer directly to him and Ed to his 
grave, and what a horror to think that I may have had to live 
with that.
    Once again, Mark's privacy was protected. Adults with 
severe mental illnesses are not always able to make good 
choices for themselves concerning their treatment or their 
actions. They may need help of a family member or other 
responsible parties to be sure they receive required treatment. 
They may need outsiders to keep them and others out of harm's 
way, but due to HIPAA, even Mark's parents were unable to get 
requested information or help make decisions for his treatment.
    So I would ask you. Is the privacy of one individual more 
sacred than a life? Is it more important than the welfare of 
our general public? Is it more important than allowing our law 
enforcement to know when a potentially dangerous offender is 
being released back into the very community that they risk 
their own lives every day to protect?
    Ed was an inspiration to so many in our community, and most 
importantly, he was a loving son, father, grandfather, and 
brother. I urge Congress to update this law so we can prevent 
further tragedies like this one.
    Thank you.
    [The prepared statement of Ms. Thomas follows:]

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    Mr. Murphy. Thank you, Ms. Thomas. Ms. McGraw will be 
recognized for 5 minutes.

                   TESTIMONY OF DEVEN MCGRAW

    Ms. McGraw. Thank you very much. I really appreciate this 
opportunity, and I want to thank the Chairman and the 
subcommittee for focusing on these issues which are clearly 
very critical. I direct the Health Privacy Project at an 
organization called the Center for Democracy and Technology, 
which is a non-profit public interest and advocacy organization 
that works on behalf of consumers.
    We like to think of privacy as playing an incredibly 
important role in making sure that people who are suffering 
from stigmatizing conditions like mental illness will actually 
get into treatment. Many people express, one out of six in 
surveys consistently, that if they didn't have some guarantees 
in confidentiality that they would not seek treatment, and that 
is the reason why we have privacy laws. They are not aimed at 
trying to create obstacles for people necessarily but to create 
the kind of treatment environment that people with stigmatizing 
conditions with want to be in.
    Having said that, they are not absolute. They have lots of 
exceptions, and the previous panel talked about them, some of 
the members of this panel have talked about them as well, that 
allow for the notification of persons in the event of a serious 
and imminent threat and also notification of family members 
except in cases where there has been an objection by a patient 
who has the right to object. So in this case it would be either 
an adult or an emancipated minor or in some States that allow 
minors to consent for treatment on their own and to be able to 
control their privacy rights. In that case the minor would hold 
the right. If that objection has not occurred or you are not 
dealing with someone who is incapacitated, HIPAA does provide 
for the ability for providers to share information with family 
members, with close friends, or with people that the patient 
designates.
    Having said that, I think it is abundantly clear from the 
testimony that we have heard today that HIPAA is badly mangled 
in terms of how people interpret it, and using it frequently as 
a shield not to disclose information or because they fear 
liability, which, frankly, is not anywhere in HIPAA, and it 
is--what is incredibly frustrating to me when I hear these 
stories, and I am sure it is frustrating for all of you, too, 
is that HIPAA doesn't say you can't disclose. So for people to 
blame this on HIPAA is just incredibly frustrating because, in 
fact, HIPAA does allow those disclosures in those cases, and 
where the disconnect is happening is just incredibly 
frustrating to me. Again, I am a privacy advocate, but I 
believe in the reasons for these exceptions. We try to take a 
very balanced approach to these issues and understand the 
reason why those exceptions exist, and yet for whatever reason 
the myth that you can't disclose to family members, and, again, 
this is--the disclosure to family members are not bound by the 
potential for a serious and imminent threat.
    It is the case, though, that if an individual objects, 
again, if they have the competency and the power to object, 
then that would be the case where you couldn't disclose. But I 
would say more often than not there is, again, experiences of 
the folks at this table notwithstanding, people actually want 
their family involved in their care. I have had people say to 
me, my mother, my elderly mother, who I am caring for, I would 
like to be able to have her doctor talk to me about her 
treatment and yet that office is telling me that HIPAA will not 
allow it to happen. And that is so untrue and so I am 
incredibly sympathetic to the frustration of people who are 
told that HIPAA requires something that it doesn't, and I am 
trying to figure out what we can do better in terms of 
educating folks about what HIPAA does and what it doesn't do 
because it sounds to me like too many people are hiding behind 
it in circumstances where there are clear exceptions that would 
allow for that information to be shared.
    Some of the testimony of Director Rodriguez in the first 
panel, frankly there was a lot more--I had a lot greater 
understanding of the exception for family members than I did 
before the hearing, and so that suggests to me that this 
guidance, which I think is good, it is not the letter that 
everyone has been talking about because the letter deals with 
serious and imminent threat. This is guidance about what can be 
shared with family members because often patients, in fact, 
want their information to be shared with one or more of their 
family members or a close friend who is helping to care for 
them, and yet it doesn't happen.
    And it could be made more clear, frankly, and we could find 
better ways of disseminating this guidance. I mean, I know 
where it is on the Web site, but there is probably lots of 
folks who can't find it, who aren't aware that it exists, and 
particularly when faced with a person and a healthcare facility 
telling them, which is probably something that they 
unfortunately believe, that HIPAA won't allow that information 
to be shared, when, in fact, it does.
    I am happy to answer any questions, and I appreciate the 
opportunity.
    [The prepared statement of Ms. McGraw follows:]

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    Mr. Murphy. Thank you very much. We thank all the 
panelists. I want to also say here that our hearts go out to 
the families, Mr. Wolfe, Mr. Kelley, and Ms. Thomas. It is a 
sad tragedy and Mr. Kelley, that you are still dealing with 
here.
    We are going to recognize each person for 5 minutes.
    I just want to make it clear, Ms. Levine, you stated you 
had some opinions in your testimony. You are not a licensed 
provider, am I correct?
    Ms. Levine. No, no. We are----
    Mr. Murphy. And you are not a practicing therapist in this 
field?
    Ms. Levine. Not at all.
    Mr. Murphy. OK. It is just very important for the record 
because on page ten of your written testimony you said that 
doctors don't want to share information, and it is, ``a 
convenient excuse not to talk to families or listen to what 
they know about a patient.'' You went on to say it is, ``easier 
to avoid difficult conversations about prognosis and treatment 
options.''
    Dr. Martini, is that true that doctors don't want to know 
this, they don't want to know this information, they don't want 
to talk to families because it is difficult?
    Dr. Martini. No. I think that the vast majority of 
physicians that I work with are very interested in sharing that 
information and very much want, I think, to involve families in 
care. I mean, I think we know that particularly for psychiatric 
patients that their prognosis is approved, that, one of the 
ways I look at it is I see a patient perhaps at the very most 
an hour a week, and the families are dealing with these 
individuals on an ongoing basis, and I think any recommendation 
that I make as a clinician is much more likely to be successful 
if I am able to get the support of the family.
    Mr. Murphy. Mr. Wolfe, Ms. Thomas, and Mr. Kelley, just 
real briefly, just in a word or two because I don't have a lot 
of time, also from your standpoint because you have also talked 
to providers about these cases, do you think in these cases the 
providers did not want to talk to you, or they did, but they 
felt they could not because of their interpretation of the law?
    Mr. Wolfe?
    Mr. Wolfe. Yes. My family physician told me later that he 
did want to disclose it, but he felt that he was under the 
obligation of the HIPAA rules not to disclose it.
    Mr. Murphy. Mr. Kelley?
    Mr. Kelley. In 14 years I have never encountered a 
situation where a treatment provider did not want to disclose 
it. In fact, they went out on a limb and would secretly tell 
us. No, I have never had that.
    Mr. Murphy. Ms. Thomas?
    Ms. Thomas. I can only speak for what law enforcement told 
me and also what Mark's parents have told me about, and they 
all had difficulty getting information.
    Mr. Murphy. Thank you. Mr. Wolfe, Mr. Kelley, you heard 
from Mr. Rodriguez from the Office for Civil Rights that the 
law, it sounds like he is saying that the law is adequate, and 
the problem is that providers aren't really aware of the law 
and are unjustifiably worried about lawsuits, perhaps even 
hospital administrators who pressure staff not to disclose 
information or they will be fired.
    Do you think that is true that it is adequate, both the way 
the law is worded and in terms of the way information gets out 
to providers?
    Mr. Wolfe?
    Mr. Wolfe. I don't think it is adequate as far as getting 
out to the providers because both in my son's case with the 
rehab situation, as well as my family care physician, both of 
them after Justin deceased, I confronted them, and they both 
told me that they definitely would have said something with 
regard to informing me. However, again, with Justin signing the 
HIPAA disclosure, they were not permitted to. So I do feel that 
they did have an obligation. They knew that it was a life-
threatening situation with the use of heroin, but they were 
obliged to follow the HIPAA regulations.
    Mr. Murphy. Thank you. Mr. Kelley?
    Mr. Kelley. In all due respect I fear there is a 
significant detachment from reality here. Not with you, sir, 
but with Mr. Rodriguez. It is underlined, unless the patient 
objects, and someone that is severely mentally ill universally 
wants to object. They don't believe they are ill.
    So that gets thrown out the window, and the fact is that we 
need to have exceptions for the severely mentally ill. It is 
just plain and simple.
    Mr. Murphy. Ms. Thomas?
    Ms. Thomas. I can speak on behalf of the fact that I am a 
volunteer EMT for our community, and the threat of lawsuit, it 
prevents us even from feeling like we are able to tell direct 
family members conditions of patients that we transport. So 
either it is misunderstanding but that is what is emphasized to 
us in our training.
    Mr. Murphy. Thank you. Ms. McGraw, in your written 
statement you said that 17 percent, or about 38 million, say 
they would withhold information from healthcare providers due 
to worries about how medical information may be disclosed. You 
were citing a study.
    Ms. McGraw. Yes.
    Mr. Murphy. My understanding is that study was on general 
health issues, not mental health or severe mental illness. Am I 
correct?
    Ms. McGraw. No. That is right. In the time that I had to 
prepare for this testimony I looked for some more specific 
statistics on persons being held back from seeking treatment 
for mental health, and I didn't have----
    Mr. Murphy. Sure.
    Ms. McGraw [continuing]. Enough time to find something 
directly on point. I did find something on the National 
Alliance on Mental Illness Web site that talked about how two-
thirds of the people with mental illness do not seek treatment 
for a number of reasons; the lack of knowledge, fear of 
disclosure----
    Mr. Murphy. Yes. I appreciate that, and I hope if you find 
some other studies, could you----
    Ms. McGraw. Yes. I would be happy to keep looking.
    Mr. Murphy. I might also say that----
    Ms. McGraw. I just ran out of time.
    Mr. Murphy [continuing]. We have folks here also saying 
that doctors didn't disclose information, and people are over-
interpreting the law, not disclosing it here, and you are 
saying that perhaps patients are also over-interpreting that it 
would be disclosed.
    Let me ask you this. Could you--something very important. 
You said it is badly mangled. I think those were your words. 
What could be done to clarify the law? Do we need legislative 
language, do we need to cite case law, do we need some 
clarification from the Office for Civil Rights, more public 
education? What do we need here?
    Ms. McGraw. The badly mangled part is--was the reference to 
the fact that we had all this testimony about what is really in 
HIPAA and yet people are being told, in fact, that HIPAA is 
something that it is not and with significant consequences.
    You know, more guidance and better ways of disseminating it 
so it is not, you don't have to look really hard for it on a 
Web site absolutely is the first step that we should be 
pursuing here, and ideally that could be done in conjunction 
with the professional societies who have more effective 
mechanisms for doing outreach to their members. You know, 
having read this guidance, I am like, well, it is clear, but it 
could be made more clear, more examples. In this circumstance 
you can do X. In this circumstance, you can do Y.
    Mr. Murphy. Thank you. We will look forward to getting your 
specific recommendations.
    Mr. Braley, 5 minutes.
    Mr. Braley. Thank you, and I should also note, Mr. 
Chairman, that Ed Thomas's sister, Connie Flaharty, is also in 
the audience today. This has impacted her as well, and Jan, I 
think some of the things that your testimony brought out is 
there is this misperception that the issues we have been 
talking about today are unique to large urban areas with a 
higher concentration of people who are seeking treatments for 
severe mental illness. Parkersburg is a town of 2,000 people. 
Five years ago this May it was nearly destroyed by an F5 
tornado, and your husband, Ed, was one of those people in the 
town who rallied people to come back, put the community back 
together, and one of the other things that I think is so 
important about your story is that Mark Becker is someone you 
and Ed knew very well.
    Ms. Thomas. Exactly. Yes. He was a member of our community. 
We have known him his entire life and his parents, and I know 
their frustration in getting him treatment, but there again, I 
agree with what they are saying. When it comes to severely 
mentally-ill people, you can't classify them with someone that 
has cancer or hepatitis or those kinds of things because their 
thinking is just not rational, and I think there maybe needs to 
be some exceptions to those rules there.
    Mr. Braley. Well, and one of the other things that we know 
is that from the stories that have come out, you and Ed went to 
the same church as Mark Becker's parents. So it wasn't like 
this was a stranger in your family, and I know that the Becker 
family has expressed some of the exact same frustrations as 
parents that we have heard from the other panelists in trying 
to get Mark the help he needed so that he could put his life 
back together, and I think that is one of the most disturbing 
things about this topic is these are stories we hear over and 
over and over again, and it points to a breakdown in our 
ability to get people who need it the services that they need 
in communities all over this country.
    But one of the things that I am really interested in is how 
this particular tragedy in your life has changed how people in 
your community think about the problems we have been talking 
about.
    Ms. Thomas. Well, it is hard to speak for other people, but 
I do think there needs to be more awareness of mental health. I 
think this needs to be expanded on quite a bit. I don't think 
there is enough resources out there for people. I think the 
fact that no one knew that Mark was released and a threat was 
very frustrating to people. I mean, there were a lot of victims 
involved. It wasn't just our family. Those young kids were 14 
and 15 years old that witnessed their coach getting shot down 
at close range in cold blood, and it all could have been 
prevented, and I think that is a big frustration for a lot of 
people. They are just--he was not able to get out of harm's 
way, and he was loose on the streets just because he wanted to 
be.
    Mr. Braley. Well, I think one of the other things this 
points to is I lived with somebody with a severe mental illness 
40 years ago, and I remember the stigma attached to mental 
illness then, and I think we would like to think that we have 
come a long ways as a society in dealing with mental illness--
--
    Ms. Thomas. Yes.
    Mr. Braley [continuing]. As something that is just as real 
and impacts people's lives as much as other diseases, but I 
think the reality is that there is still a lot of stigma 
attached to it. We like to avoid having these conversations 
unless it is impacting us personally. So I want to thank all 
the panelists for having the courage to come share your 
stories. I know that it has been an incredible challenge for 
all of you.
    And one of the things that I talked about earlier is this 
challenge that family members have with adult children of being 
able to have a role in making decisions about their care when 
there are sometimes obstacles, and Dr. Martini, you talked 
about this a little bit, and one of the questions I had raised 
earlier was whether this risk to self or others standard is 
still a viable way of getting patients the help they need for a 
truly effective treatment. You gave examples of both sides of 
the story; one where a family's intervention was 
counterproductive, one where the need for family intervention 
was not provided that could have been in the best interest of 
the patient.
    So how do we resolve this?
    Dr. Martini. Well, I think, Congressman, what I would like 
to do is think about what you last referred to, what is in the 
best interest of the patient, what do we think is going to help 
the patient most, help them in their recovery. I understand 
that there are issues around the release of information and 
confidentiality, and I understand that patients are sensitive 
about that, but what we are talking about is not a release of 
information generally out to the community. What we are talking 
about is thinking about particular cases, looking at those 
cases on a more individual basis, and deciding if this patient 
is going to do well, what is going to be necessary, what kind 
of information needs to be shared, should that information be 
shared with family members, are they an asset in this 
particular case, and can they help out this individual? Would 
it be a good idea to share the information with the primary 
care physician in their community who quite often coordinates 
care in a variety of ways. That is also an asset that quite 
often is not part of the process in some ways because the 
patients are reluctant to have any local connection know much 
about what is going on with them.
    Mr. Braley. Thank you.
    Dr. Martini. So it is what is in the interest of the 
patient.
    Mr. Murphy. Thank you. Mr. Braley, that article you 
referenced before from Sports Illustrated, would you submit 
that for the binder so it is in the record as well?
    Mr. Braley. I would be happy to.
    Mr. Murphy. That has got to be tragic for all the reasons 
someone would be on the cover of Sports Illustrated, that has 
got to be the saddest. It is. Thank you.
    Now recognize for 5 minutes the gentleman from Virginia, 
Mr. Griffith.
    Mr. Griffith. Mr. Chairman, if I could pass at this time, I 
would appreciate that.
    Mr. Murphy. We will do that. We will go to Mr. Johnson for 
5 minutes.
    Mr. Johnson. Thank you, Mr. Chairman. First of all, panel 
members, I would like to reiterate thank you so much for being 
with us today and for your testimony. I know these are very 
tough testimonies to give, and our hearts go out to you.
    Ms. Levine, you suggest that healthcare workers sometimes 
use HIPAA as an excuse not to share information and not simply 
because they are afraid of fines or sensors. Why else would 
someone withhold information from inquiring family members?
    Ms. Levine. Well, because the role of a family member in 
the care of someone who is, as I said, my, most of my 
experience is with older adults, although I personally was the 
family caregiver for my late husband for 17 years. He had a 
traumatic brain injury and was quadriplegic. So I have my own 
experiences with this system.
    But family members ask hard questions. They want to know a 
lot of information about why did this happen, what can I 
expect, why are you giving this medication when it is on the 
list that says this is contraindicated. I can't tell you, and 
this is not to disparage the nursing profession because they 
are fabulous, but I have had so many nurses say to me, are you 
trying to tell me how to do my job? OK. Yes. I think I am 
because my husband should not have this medication and that 
medication together.
    So there is a kind of--I can't tell you how many 
physicians, nurses have said to me, family members, they are 
pests, they are nuisances, and they are. I mean, I am not 
denying that because they ask the hard questions. The patient 
in the bed is in pain or is sedated, not going to be a trouble.
    Mr. Johnson. OK.
    Ms. Levine. So it is, I think it is a truth universally 
acknowledged that family members are important on the day of 
discharge, take--get them home but not necessarily in the 
course of a hospitalization.
    But I really think that the HIPAA scare, and I am now 
concerned that there is now going to be a high tech scare 
because I am already getting emails from vendors saying, we are 
going to protect you from these horrible audits that are going 
to happen, and if you only you hire us, you know, you will be 
safe.
    Mr. Johnson. Oh, yes. Every time there is a new government 
regulation an industry crops up----
    Ms. Levine. Yes.
    Mr. Johnson [continuing]. Around, providing services.
    Ms. Levine. And, so, I mean, it is not one thing. It that 
things support each other----
    Mr. Johnson. OK.
    Ms. Levine [continuing]. Is my feeling.
    Mr. Johnson. Let me quickly go to several other questions.
    One of your recommendations has been for OCR to reinforce 
to healthcare providers the provision in HIPAA that permits 
disclosure of relevant information, protected health 
information to family caregivers or others who are going to be 
responsible for providing, managing, or paying for a patient's 
care. How do you suggest OCR go about doing this?
    Ms. Levine. Well, I think throughout--and I agree that the 
Web site is one way but not the best way. I think that there 
can be involving the medical professions, involving the people, 
the risk managers who are doing a lot of the training, 
involving the leaders and saying, this is not good patient 
care. We are concerned about hospital readmissions. One of the 
reasons people come back to the hospital in 30 days and cost 
Medicare tons of money is that the family members who are 
responsible for that care don't know what to do.
    Mr. Johnson. OK.
    Ms. Levine. So they bring them back.
    Mr. Johnson. Do you have recommendations for CMS as well?
    Ms. Levine. Yes. CMS should definitely encourage as part of 
the conditions of participation in Medicare and Medicaid to 
make sure that the training that they are responsible, 
accountable for training the hospitals and nursing homes to 
train their staff in a balanced way, and one more thing which I 
didn't get a chance to say.
    Mr. Johnson. Quickly. I am running out of time but go 
ahead.
    Ms. Levine. Just quickly. When we encounter through our 
contacts with providers, patients who object to having a family 
member involved, it has nothing to do with privacy. It has to 
do with I don't want my--I don't want to worry my daughter, I 
don't want her to----
    Mr. Johnson. OK.
    Ms. Levine [continuing]. Have any responsibilities. It is 
not the privacy.
    Mr. Johnson. Got you. OK. Mr. Kelley, you have observed 
that a clear culture of fear pervaded one of the facilities 
your son was admitted to. How does this culture of fear impact 
decision making by those healthcare workers and facilities 
tasked with taking care of your son?
    Mr. Kelley. And it is more than one hospital, sir, but 
essentially we are not in a position to prevent horrific things 
from happening, and we have had some candid discussions with 
staff and doctors in multiple hospitals, where they all 
acknowledge that, they use the word, our hands are tied, due to 
the HIPAA privacy rules. And so we try to go further and 
emphasize the inability of the patient to take care of 
themselves and make good decisions, and it doesn't phase them.
    So what happens is the patient gets mistreated actually, 
and so our son has come home and been on the wrong medication 
and has been in a horrible condition. So it is pervasive. It is 
not just isolated in one situation.
    Mr. Johnson. Thank you. Mr. Chairman, I yield back.
    Mr. Murphy. Thank you. The gentleman's time has expired.
    Ms. DeGette for 5 minutes.
    Ms. DeGette. Thank you very much, Mr. Chairman, and I would 
like the panel to know that I have read all of your testimony 
even though I wasn't here to hear you say it, and for those of 
you have lost loved ones, my deepest condolences. I know, as I 
said in my opening statement, I know how difficult it is to 
have a child with a severe illness. My child has a physical 
illness, not a mental illness, and she is now a freshman at 
college. So I know what you have been dealing with in terms 
of--and Dr. Martini, I know what you were talking about in your 
testimony, too, of the parents paying the college, you know, 
the college tuition, parents obviously love the child and are 
deeply concerned, and yet the child is over 18, and they are 
wanting to become independent, and they do have privacy issues. 
It is a really hard balance especially when you are dealing 
with some of these mental illnesses which as we learned in our 
previous briefings in this panel from professionals, bipolar 
disease manifests, which is at the root of some of the 
violence, most notably suicides, that evidences itself in young 
men between the ages of 18 and 25 and in young women at a 
slightly older age. But this is right at the age where they are 
becoming independent from their families, and most of the time 
they are over 18.
    So it is a hard balance because on the one hand it is like 
Ms. McGraw was talking about, you want these young people to 
not feel the stigma so that they will get medical treatment and 
on the other hand as parents we want to know if they are at 
risk to themselves or to others, and so it is a balance.
    Dr. Martini, something you said just a moment ago really 
struck me, which is, you know, in trying to grapple with this 
issue you said that we need to look at the individual. The 
doctor, we need to rely on the doctors to look at the 
individual cases and to see if this is a situation where having 
parental involvement or involvement of another responsible 
adult would be appropriate to let them know. And I guess I 
agree with that, but I guess I also in listening to the 
testimony of the last panel would--that is exactly what they 
were saying. What they were saying is in their interpretation 
of HIPAA that is exactly what medical providers are allowed to 
do.
    And so I think what we need to do is we need to--providers 
need to understand what their abilities are under HIPAA. 
Wouldn't you agree with that?
    Dr. Martini. I mean, I think that that is a very important 
part. I think educating providers about HIPAA also in a way 
that makes it seem like this is more of a collaboration that--
--
    Ms. DeGette. Right.
    Dr. Martini [continuing]. There is information to be 
gained. I mean, for example, the State of Tennessee has created 
a review panel of physicians that can look at cases and can 
override aspects of HIPAA if that panel, and it is an objective 
panel----
    Ms. DeGette. Right.
    Dr. Martini [continuing]. Decides that this particular 
situation is worthy of that, and I think those kinds of 
initiatives where HIPAA is seen as not simply a government 
regulation----
    Ms. DeGette. Mandate. Yes.
    Dr. Martini [continuing]. But as a process, as something 
that they can participate in, I think the outcome would be 
better.
    Ms. DeGette. I agree with that, and if we still have our 
HHS witnesses here, yes, we do, some of them, is I think we 
should also have our federal agencies work with the colleges 
because a lot of these problems seem to come with the colleges 
trying to balance the important privacy protections for their 
students and also letting parents know. And, again, I think 
they would have some leeway, but we would have to work with 
them to let them know that.
    Dr. Martini. I think it is a very good point.
    Ms. DeGette. OK.
    Dr. Martini. I think there would also need to be some help 
for them because coordinating mental healthcare for students 
some thousands of miles away would be a challenge.
    Ms. DeGette. And this goes to my--the last thing I want to 
talk about because it is not just the HIPAA issues. It is also 
access to treatment, and I think some of you have probably seen 
this in your communities. I had--I was actually at the eye 
doctor, and the assistant came in, and she said she had a 19-
year-old son diagnosed with bipolar, and he had become violent. 
He was--he actually put himself into a 72-hour hold and then he 
was released, and he actually, you know, involved his parents, 
and they were involved with it. They couldn't find any mental 
health treatment for this kid in Denver, Colorado, and this is 
another issue as well is, you know, once you diagnosis this, 
you have got to be able to find treatment. I think, Doctor, you 
probably agree with that.
    Dr. Martini. Absolutely. I think work force is a big issue, 
certainly in pediatric mental health services----
    Ms. DeGette. Yes.
    Dr. Martini [continuing]. And also I think, I kind of 
alluded to this a little bit, we also need to work on access 
through primary care. I mean, the thing to remember is that a 
majority of the mental health problems are actually treated by 
local physicians in the community, and we need to work with 
them, we need to help them, we need to educate them so that 
access begins locally.
    Ms. DeGette. Thank you. Thank you, Mr. Chairman.
    Mr. Murphy. Thank you. I now recognize the gentleman from 
Virginia, Mr. Griffith, for 5 minutes.
    Mr. Griffith. Thank you, Mr. Chairman. I appreciate your 
patience.
    Let me follow up on that. I think, Dr. Martini, you were 
talking about local health professionals being involved and 
trying to make sure people get treatment. Is it your opinion or 
what are your thoughts, can HIPAA also stand in the way of 
proper communications between, for example, the treating mental 
health professional and a patient's general care physician?
    Dr. Martini. I think that there have been cases that I have 
worked on where the family, the patient, does not want the 
local physician to know about the extent of the psychiatric 
problems in part because the local physician is in the 
community, knows a great many people. I think that a good bit 
of that anxiety is misplaced on the part of the patient, but I 
can understand it. I also think that what we need to do is we 
need to work with these local clinicians and physicians to 
involve them more in mental healthcare to educate them to make 
them part of the mental health system so that families 
recognize that the help that they provide is going to be in the 
patient's and the family's best interest.
    Mr. Griffith. Because one of my concerns that we heard from 
a previous hearing was it takes--or informal hearing but it 
took 18 months for the average person with a mental health 
problem to, you know, get to see a mental health professional, 
and that is of concern and something that we need to address, 
but it would seem to me that your primary care physician might 
be in a position to shorten that time period just by making the 
referrals or by saying this is not such a big deal, and when it 
is a trusted family physician, a lot of times they can be 
helpful in that regard.
    Also in following up, if the professional is not in the 
immediate community, I represent a rural area, so the mental 
health professional may be, you know, the next community over, 
30, 40, 50, 60 miles, maybe more, and if they can then 
communicate with the local healthcare provider, it does create 
some benefits there.
    From the perspective of the patient, why do you think such 
communication, free communication between the healthcare 
providers is important?
    Dr. Martini. I think that on the part of the patient what 
it will allow them to do as you were pointing out is receive 
services, I think, more efficiently. I think that the local 
practitioners understand the community, understand what is 
available in the community, what is available not simply from 
the standpoint of medical services and mental health services 
but also within the community, within schools. They are 
familiar with that. I think that our--what we need to do as 
mental health professionals is we need to work with them to 
teach them what they can do, to get them comfortable with what 
they can do in their practices, and also to teach them when 
they can, when they should refer to us, and then as part of 
that we need to be available. We need to make ourselves 
available, and that is a big question. We do need to increase 
the size of our workforce but also we need to do this in a much 
more efficient and effective way.
    Mr. Griffith. Thank you very much.
    Ms. McGraw, I noted in your testimony that the fear of 
liability for violating HIPAA's provisions coupled with 
misunderstanding of its provisions can be a recipe for not 
sharing.
    Ms. McGraw. Yes.
    Mr. Griffith. And I am just wondering if you are familiar 
with and I hate to ask Ms. Thomas, but I would ask, are you 
familiar with suits that go the other way, where permission 
could have been granted. I mean, in Ms. Thomas's case, you 
know, the police asked to be notified, he clearly--the police 
had made a determination he was dangerous to the community, 
they didn't want him out of on the streets, the hospital then 
used HIPAA as a shield to say, oh, well, we couldn't tell the 
police anything.
    So I am just wondering if you, Ms. McGraw, have heard of 
any suits, and Ms. Thomas, did you all even consider suing them 
for letting this dangerous person back out on the streets when 
HIPAA would have allowed it?
    Ms. McGraw. So I can tell you that HIPAA does not actually 
have any provisions that enable anyone to sue on enforcement of 
it. So either a patient in terms of privacy rights or someone 
else in terms of sort of over-interpretation. Keep in mind also 
that HIPAA's allowance of disclosures for these reasons that we 
have talked about is permissive. It still relies on the 
judgment of healthcare providers to make the judgment call 
about what is in the best interest of the patient.
    Having said that, we need to keep in mind that HIPAA's the 
floor and that there are State laws that may provide greater 
protections, and they may medical privacy statutes that could 
be used for--to impose liability in those circumstances.
    But I certainly have never heard of anybody being sued for 
not releasing information except in the case of information 
that a patient asks for that is about them, because you are 
required under HIPAA to disclose that information. You can be 
held accountable under HIPAA for not doing so.
    Mr. Griffith. I guess my concern that, and I was a 
practicing attorney for a lot of years, but my concern is that 
is one of the ways people like to hate lawyers, and I 
understand that, but that is one of the ways you sometimes get 
rectification in some of these cases, not that the money is 
important. It can't bring anybody back, but it may keep 
somebody from making that mistake again. I mean, here we had an 
individual in your case, Ms. Thomas, who the police bring in, 
he has just run his car into the back of a garage, he is 
clearly either a danger to himself or to others. They bring him 
in, they want psychological evaluation because he is a threat 
to somebody, and the hospital just lets him walk out even 
though the police ask for notification. I can't think of 
anything else that would--and to me that is the classic 
definition of negligence, and I am very sorry. If you want to 
answer you can but----
    Ms. Thomas. No. It is fine. It was considered as far as 
looking into a lawsuit, however, we were unable to get Mark's 
records due to HIPAA, and we just decided that it probably 
wouldn't be--it really wasn't going to benefit anybody at that 
point in time to proceed with a lawsuit.
    Mr. Griffith. And I respect that decision.
    Mr. Murphy. The gentleman's time has expired.
    Mr. Griffith. Thank you. I appreciate it, Mr. Chairman, and 
I yield back.
    Mr. Murphy. Recognize Ms. Schakowsky for 5 minutes.
    Ms. Schakowsky. Thank you, Mr. Chairman.
    First of all, I just want to say that I hope in future 
hearings and other events that we will include testimony and 
participation from the patient community, and I know that there 
is some--I know there is a discussion right now----
    Mr. Murphy. Excuse me.
    Ms. Schakowsky [continuing]. About including testimony----
    Mr. Murphy. We cannot--we are not permitted to have any 
outbursts, and I would ask that members not say things that 
might also provoke some outburst. So I ask the folks be--just 
continue on. Go ahead, Ms. Schakowsky.
    Ms. Schakowsky. OK, and I know there is some discussion 
about including written testimony, highly footnoted, into the 
record, and I would certainly recommend that that be done 
without much ado.
    I wanted to--and let me thank especially the family members 
who came here with your stories. I know it has got to be very, 
very hard to do, and it is much appreciated.
    So I want to understand the examples that, a couple of 
examples that you gave. You had a patient, a former patient 
with a mild form of autism, and eventually his parents went to 
court against his wishes because they said their son could not 
care for himself and thus remained dependent, and you conclude, 
``Unfortunately, the subsequent ruling in their favor was 
counter to our goals of psychiatric treatment and derailed his 
progress in therapy.''
    So are you saying that that was a bad decision that the son 
should have been able to do what he wanted to do?
    Dr. Martini. No. What I was saying was that because the son 
would not allow his parents to be involved in his affairs, nor 
would he let them be involved in therapy, so I couldn't 
incorporate them into any of the programming that I was trying 
to organize, any of the treatment that I was trying to 
organize, couldn't involve them in the medications that he was 
prescribed, and they had serious concerns about how he was 
going to function. Because we couldn't negotiate that, because 
he continued to refuse to allow them to participate, this was 
the only recourse that they had, it went counter to our therapy 
because the purpose of the therapy for me was to make him more 
functional, that my goal was----
    Ms. Schakowsky. I understand that, but what would--at the 
point that you are saying if they had been involved earlier and 
I understand that, but at the point of someone making a 
decision, an adult making a decision about what they want to 
do, is there--I am trying to understand what a better outcome 
might have been and could it have been done without going--
having to go to court.
    Dr. Martini. I think that is one of the reasons I put it in 
there is because I was searching for another way to have a 
better outcome without having to go to court. If there was a 
mechanism, for example, similar to the thing I mentioned in 
Tennessee where there was an opportunity to appeal or to 
present the case in front of a review board involved in HIPAA 
to say this is what is going on in this case, I think it is in 
this individual's best interest to have the parents involved, 
to have them actively participate because I think it is more 
likely that this individual is going to be successful. His 
treatment is going to be successful, and his life, I think, is 
going to be less traumatized. If you have an opportunity to do 
that and there is a means to modify what is happening with the 
HIPAA regulations in these particular cases, I think that it 
would be an advantage not just for the family but also for the 
patient.
    Ms. Schakowsky. So you asked the question, if there is a 
bias in these situations, should it be towards parental 
involvement rather than away from it. What do you conclude?
    Dr. Martini. Pardon me?
    Ms. Schakowsky. What do you conclude? If there is a bias in 
these situations, should it be toward parental involvement 
rather than away from it?
    Dr. Martini. I think that if there is a bias in the 
situation, you know, as a child and adolescent psychiatrist, my 
bias has been to involve families. We involve families as often 
as possible in treatments, and I think that for a variety of 
reasons, and I think if there is going to be a bias in that 
situation, my recommendation would be that it be toward family 
involvement, particularly if there are no specific reasons 
within that family, if there are no contraindications within 
the family, nothing that would adversely affect the patient.
    Ms. Schakowsky. Just wonder, I mean, and I am not weighing 
in on either side, but I think there are people in the 
independent living community that would feel that a young adult 
with autism, that there may be some better ways for that 
individual to live in the community with support, help, et 
cetera, rather than as you used the word, dependent, at home.
    Do you see that as part of the negotiation that might 
involve everyone?
    Dr. Martini. Absolutely. I mean, I think in this particular 
case the goal for this patient was greater independence. What 
the hope was in treatment was that he would be able to manage 
his affairs, that the level of anxiety that he felt in new 
situations would go down, that we would increase the 
capabilities that he had to manage his medications. The sense 
was that having his parents involved, I think, would have 
expedited that process.
    Ms. Schakowsky. Thank you. I yield back.
    Mr. Murphy. Thank you. Recognize Ms. Ellmers for 5 minutes.
    Mrs. Ellmers. Thank you, Mr. Chairman, and I would also 
like to say to the panel, thank you so much--and I am going to 
get emotional--for coming and sharing your stories because this 
is the only way we are going to change anything in mental 
health. I know how difficult it is for you to come forward, but 
I can just say how much we appreciate your input so that we can 
make the right decisions moving forward.
    With that I would like to start, Ms. McGraw, thank you for 
your comments to my colleague. You know, one of the areas, as a 
nurse, and Ms. Levine, I completely I associate myself with 
your statements because I think sometimes it is easier to just 
give a blanket, hey, you don't know what you are talking about. 
You are the family member. Anyone who knows better for your 
family is you. So, unfortunately, that is one of the downfalls 
of nursing is sometimes we share our opinions a little too 
openly.
    But I am concerned about the misconception of lawsuits 
because as we know, there are so many frivolous malpractice 
lawsuits out there. This is one of those gray areas where 
healthcare professionals do not feel that they are protected. 
Certainly HIPAA violations can be weighed against them, but at 
the same time as far as malpractice, that is not necessarily an 
avenue that will be taken. Am I correct with your testimony?
    Ms. McGraw. Yes. Well, certainly there is nothing in HIPAA 
that would enable someone to be sued. Again, to the extent that 
you have seen sort of any lawsuits in this space around privacy 
violations, they are filed under state law provisions.
    Mrs. Ellmers. OK.
    Ms. McGraw. And I don't do malpractice work, but, again, if 
you are being--if you are facing a malpractice lawsuit, that is 
a State law action.
    Mrs. Ellmers. Perfect. Thank you, and Mr. Wolfe, I would 
like to ask you a few questions.
    Mr. Wolfe. Thank you.
    Mrs. Ellmers. With your situation especially, and as 
sensitive as it is, again I thank you for being brave and 
sharing that with us. I read over your testimony to find that 
you were in a situation where you knew what was happening to 
your son, you knew that there was a drug addiction, and because 
of that behavior on his part with the manipulation that they do 
so well----
    Mr. Wolfe. Right.
    Mrs. Ellmers [continuing]. He was able to manipulate and 
then kind of get his way.
    Mr. Wolfe. Yes.
    Mrs. Ellmers. And then you were able to get him into a 
treatment facility but then you were told that they could not 
share information with you because of HIPAA. Correct?
    Mr. Wolfe. Exactly, and the manipulation, the lying that 
goes along with addiction from what I have learned from my son 
and from others since this has happened was just to give you 
one quick example, I wanted him to go into an inpatient 
treatment program immediately, and he said to me, Dad, I don't 
want to go into an inpatient treatment because I don't want to 
start using heroin or crack cocaine. And I as a parent had to 
make the decision what to do----
    Mrs. Ellmers. Yes.
    Mr. Wolfe [continuing]. And I did my research and I did 
hear that people do smuggle in----
    Mrs. Ellmers. Yes.
    Mr. Wolfe [continuing]. Heroin and crack cocaine, and there 
are a lot of other users than Percocet using, which is what he 
had indicated that he was doing to the family----
    Mrs. Ellmers. Yes.
    Mr. Wolfe [continuing]. Not letting us know that he was 
doing heroin. So, therefore, the lies and manipulation 
unfortunately, we sent him to an outpatient which he said he 
would agree to go to, and when I tried to confront the 
outpatient counselor for the first couple of weeks I was denied 
any access to any records or be told why he was there.
    Mrs. Ellmers. You know that unfortunately is a story that 
we continue to hear, and I do agree with you. I do think that 
there are some changes that need to be made. More 
clarifications, I think, than anything so that both healthcare 
professionals, family members, and patients can all understand 
a little better what can be shared and what cannot. So I thank 
you.
    Mr. Wolfe. Thank you.
    Mrs. Ellmers. Dr. Martini, I have just about 30 seconds 
left, but I do want to say just very recently I was at the 
Partnership for Children in Cumberland County, North Carolina, 
I represent in the second district of North Carolina. We had a 
lengthy discussion about mental illness, especially in relation 
to children. I have a very good friend whose son is autistic 
and now is starting to show signs of depression and some, 
beginning signs of mental illness. They are having an 
incredibly difficult time trying to find the correct physician 
for him because of his autism that had already been diagnosed.
    Quickly, could you just say a few words about that?
    Dr. Martini. I think that the availability of services is a 
critical issue. I think at child and adolescent psychiatry we 
need to expand our workforce not just among psychiatrists but 
with all child and mental health professionals. I think we 
also, as I alluded to before, we need to work with community 
physicians. We need to work with schools. There are ways to 
provide services for children locally that can be efficient and 
effective beyond simply going to a tertiary center.
    Mrs. Ellmers. Thank you so much. I appreciate the Chairman 
giving me a few more seconds. Thank you.
    Mr. Murphy. The gentlelady's time has expired.
    Mr. Scalise is next, but I understand he is going to allow 
Dr. Cassidy to go first.
    Dr. Cassidy, you are recognized for 5 minutes.
    Mr. Cassidy. Thank you, Mr. Chairman, and thank you, Mr. 
Scalise.
    Every one of you, thank you for your note of reality.
    Ms. McGraw, clearly we are all concerned about privacy and 
yet you can respect that there is a certain ambivalence that we 
must have or that is exhibited by this. So thank you all.
    Ms. Levine, the way that you said that the HIPAA laws 
should be written in something that a patient understands, I 
put exclamation mark, exclamation mark, exclamation mark 
because it is written to avoid liability, not to inform people 
of what their rights are.
    Now, thank you, all.
    Dr. Martini, what a great name for a psychiatrist.
    Dr. Martini. I like it.
    Mr. Cassidy. I asked Mr. Rodriguez a question, and you put 
here, if you had a patient who was--if Lithium is still used 
for bipolar, and if the level is declining but the patient is 
still compensated, would you feel that current HIPAA laws would 
allow you to speak to the parent of someone who is emancipated 
by age or by law that, listen, if this Lithium level goes any 
lower, they are going to have a psychotic break. This is not an 
immediate danger, but Mr. Rodriguez seemed to indicate that 
that would permissible. Would you accept that in your practice 
that is what most psychiatrists or whomever are doing?
    Dr. Martini. If the patient explicitly stated that he did 
not want that information shared if the patient was not in 
imminent danger to self or others, I think most psychiatrists 
would believe that they should not share that information.
    Mr. Cassidy. Now, if the patient had a history of being 
non-compliant with Lithium and having bipolar episodes and 
creating some of these terrible heart-rendering stories 
occurring, would that change the calculus, or would it still 
be, no, we cannot do it?
    Dr. Martini. I think that what--when I talk to colleagues 
of mine about that situation, if they are dealing with a 
patient that they know is dangerous, if they are non-compliant 
with their medications, they inform families and significant 
others, and they take the risk that they may be in violation of 
HIPAA because they believe that it is in the best interest of 
the patient.
    Mr. Cassidy. Now, it is interesting because you say they 
take the risk, and yet that is a perception and yet some of 
what we have heard is that that should not be a risk. It should 
be kind of like, wow, don't worry. It is not a risk, but it 
tells me that there is an ambiguity even among people who are 
full-time professionals. Would you accept that?
    Dr. Martini. Well, I think that that is true. I think that 
the problem is that it is that idea of waiting until imminent 
danger. A patient can be non-compliant on medication and for a 
period of time look pretty stable, and you know that 
eventually----
    Mr. Cassidy. Now, not to be rude but we know that there are 
going to be a pattern of episodes, and so we know, man, he is 
off his Lithium. I see his level going down. Boom. It is going 
to happen again. Now, he doesn't pull a gun, he doesn't do 
anything terrible, but he does live under a bridge, he does 
leave his family, he does sell all his possessions and run down 
the street, whatever.
    In that would there be ambiguity among your colleagues 
whether they are at risk?
    Dr. Martini. I think that if when they are seeing the 
patient, if the patient appears stable and is doing well but 
they know they are non-compliant with the medications, 
understanding that mood disorders quite often are episodic, I 
think that there would be some concern if they told the family 
but they understand that in many situations they need to do 
that because the patient has a history.
    Mr. Cassidy. So, again, there is a perception they are 
running a risk?
    Dr. Martini. I think there is a perception that they are 
running a risk.
    Mr. Cassidy. Now, Ms. McGraw, Mr. Kelley used the term, I 
am not quite sure how to pronounce, but I think we are all 
familiar with it if we have a teenager. On the other hand, his 
is far more dramatic than that. A year of no insight. Now, this 
gentleman, his son said that his parents could not know his 
history, and yet he had no insight. We are not quite sure how 
to address that. What would you suggest?
    By the way, I was also struck as smart as you are and you 
are an expert in privacy, you learned something from Mr. 
Rodriguez's testimony. I will tell you, an ER physician seeing 
20 patients a night who is not in your specialty, not hearing 
this testimony, there is no way that ER physician, there is no 
way that she can actually be as facile with this information 
that we are demanding.
    What suggestions would you have as to regards of Mr. 
Kelley's son?
    Ms. McGraw. Well, one of the things that we have had a lot 
of conversation about and when I said that I learned something 
from Director Rodriguez this morning was how the concept of 
incapacity plays in the capability to share information with 
family members, which is not contingent on serious or imminent 
risk but circumstances under which a mental health professional 
can make a judgment about talking to a family member when they 
believe it is in the best interest of the patient, which is in 
circumstances when the patient is not around to object or in 
incapacity. And in looking through the guidance that is right 
in front of me about the ability to talk to family members, the 
issue of this incapacity which is, in fact, in the regulatory 
language, it is not really explored in very much detail.
    So it does leave a lot of uncertainty on the part of 
providers about how they are--you know, how do they comply with 
that and what does that mean, and it certainly would be helpful 
to have the guidance explore that issue in a little more detail 
in my opinion.
    Mr. Cassidy. Thank you very much. I yield back, and thank 
you, again, Mr. Scalise.
    Mr. Murphy. Thank you. Mr. Scalise, you are now recognized 
for 5 minutes.
    Mr. Scalise. Thank you. Thank you, Mr. Chairman, for having 
the hearing, and I especially want to thank those family 
members who have been impacted by mental illness for coming 
here and sharing your stories with us. We had I thought a real 
helpful forum back on March 5 where we had some other family 
members, including Pat Milan, who is from my district, whose 
son, Matthew, took his life, we being treated for mental 
illness. They, you know, they actually thought they were making 
progress. Both Pat and his wife, Debbie, were trying to get 
information from the doctor, from the treatment centers, and 
were not able to get that information, and HIPAA was being 
thrown up as the reason that they couldn't get access. It 
turned out after the fact, unfortunately, after he took his 
life, that in his file he had actually authorized his parents 
to have access to information, and so it was just incredibly 
frustrating, angering, you know, for us hearing this at the 
forum that we had but especially to them as parents who were 
trying to get the right kind of help for their kids, for their 
son, and just couldn't get that access.
    And so when we hear these stories, and I know, Ms. McGraw, 
you talked about it, Ms. Thomas, that people hiding behind 
HIPAA when it turns out that HIPAA really may not be the 
impediment. How do we get some clarity in HIPAA to remove this 
gray area, if it is even in fact gray, that is stopping vital 
information from being shared with family members, you know, 
and even in cases where these patients want their parents to 
have that access, and yet it is being denied.
    If, you know, anybody from Dr. Martini and maybe go across. 
If we can try to figure out what is this disconnect that is 
stopping this information from being shared when the law by 
many people's own interpretation doesn't preclude that 
information from being shared.
    Dr. Martini. I think the thing that is missing in these 
situations is a discussion of the clinical presentation and 
looking at these cases on a much more individual basis and 
providing within the law some flexibility for whether it is 
appeal or whether it is involvement by clinicians so that there 
is an opportunity for a psychiatrist, a psychologist to present 
the case to an objective body to make a request for 
modifications in HIPAA in those particular situations.
    Again, thinking about what is in the patients' best 
interests and to have that objective body rule on that process 
I think somehow making it feel as though this is not simply the 
government telling people what to do, but it is the government 
giving people an opportunity to protect their rights but also 
to ensure the patients get the best care possible.
    Mr. Scalise. Ms. Levine?
    Ms. Levine. I think we need to start with medical 
education, nursing education, and all other kinds of education 
to have objective people presenting the rules of HIPAA, what is 
permissible, so forth, not the risk managers. I am sorry if 
anybody here is a risk manager, but I think this perception of 
the legal liability, yes, anybody can sue anybody for anything, 
but the real risk is in the security of the electronic data, 
and that seems to have been ignored in all of this HIPAA scare. 
The Washington Post did a----
    Mr. Scalise. And I apologize. I have only got a minute 
left, and I want to get to the four remainder----
    Ms. Levine. Yes. So I think we need to do the education in 
an objective way, balanced way, and think about the patients' 
best interests.
    Mr. Scalise. Thanks. Mr. Wolfe.
    Ms. Levine. Definitely include the family.
    Mr. Wolfe. Yes. I just want to say that I feel that the 
parents, it is very important for parents to be apprised of 
what is happening with their children, even when they are 
legally emancipated, and I think that is important to be put 
into because of the Obamacare since we do take care of them 
until the age of 26 under our insurance, I would not have lost 
Justin if I was made aware of what he was going in for. So I 
think the parents have to be made aware. We are the best 
caregivers with regard to our children, and there has to be an 
exception with regard to that.
    Mr. Scalise. Thanks. Mr. Kelley.
    Mr. Kelley. I would like to ask that the committee start 
expanding the definition of a family member beyond a parent 
because there are other members of the families that are in 
these roles, but quite frankly, change is hard, and I want to 
thank Ms. McGraw from the bottom of my heart because it is 
taken so long to hear what she just said. We need to change 
things, and sometimes you can't get change unless you change 
things. There has got to be a carve out for the severely 
mentally ill or this unless the patient objects clause will 
rule the world.
    Mr. Scalise. Thanks. Ms. Thomas.
    Ms. Thomas. I guess I would kind of agree with what he 
said. I think we need to be made more aware of what HIPAA 
actually does prohibit, and I do think there probably should be 
some special clauses there for the mentally ill.
    Mr. Scalise. Thanks. Ms. McGraw finally.
    Ms. McGraw. Yes. Lots more guidance, clear, understandable, 
disseminated to places that people can easily find it, maybe in 
a hotline for questions.
    Mr. Scalise. Thank you, Mr. Chairman. I yield back the 
balance of my time.
    Mr. Murphy. The gentleman's time has expired.
    At this time we have finished the testimony. I understand 
that the Ranking Member has a unanimous consent request. I do 
want to say this.
    This committee has a practice of only accepting sworn 
testimony. We are going to be asked to accept a letter signed 
by a number of organizations which states in its first 
paragraph that they are submitting a statement for the record 
in advance of the hearing. I want to say that we only became 
aware of this at 7:15 this morning, and we have not had time to 
fully review this statement. In this case it is not a letter 
but as I said before, a ``statement for the record,'' which 
does not follow the tradition of this committee for sworn 
testimony.
    Moreover, this is a point of personal privilege for the 
Chairman. One of the groups who have signed this letter for the 
record has repeatedly circulated false statements about the 
Chairman and Ranking Member and have repeatedly and purposely 
misrepresented the serious and important work we are doing here 
on behalf of patients, families, healthcare providers, and the 
public. They have repeatedly and deliberately misrepresented 
the committee work with these false statements.
    Thus, in this case submitting a statement for the record 
without it being sworn testimony is of concern to the Chair, 
and I yield to the Ranking Member for her statement.
    Ms. DeGette. Thank you. Well, Mr. Chairman, I would ask 
unanimous consent to place a letter dated April 25, 2013, about 
the position of these organizations regarding HIPAA. It is 
signed by the American Civil Liberties Union, the Autistic 
Self-Advocacy Network, and the Baseline Center for Mental 
Health Law, and I would ask unanimous consent to put this in 
the record as the opinion of these organizations.
    As we have discussed before, I have been on this 
subcommittee now for 16 years, Mr. Chairman, and it has always 
been the practice of the committee to take testimony under 
oath, and you are absolutely correct that this letter obviously 
is not under oath. It has also been the practice of this 
committee, though, to get extensive information from folks who 
might have expertise or opinions or otherwise, and I have seen 
this happen numerous times from both sides of the aisle. Simply 
accepting a document into the record does not necessarily imply 
agreement with the position stated in that document by either 
the Chair, the Ranking Member, or any other member but rather 
it helps to give a more full picture of what people think.
    But I agree with you. I do not consider this April 25 
letter to be testimony or to substitute for testimony. I 
believe that it is a statement of that group, and we have done 
that. I have got many examples here I could give, but in the 
interest of time I won't. I simply ask for the Chair's comity 
in putting this in and look forward to working with you so that 
we can clarify documents that will be put in in the future.
    I would also note we also did put an article from Sports 
Illustrated in the record today. So it seems to me this letter 
would be appropriate.
    Mr. Murphy. I thank the Ranking Member, and out of my 
respect for the Ranking Member and understanding some of the 
unique circumstances in this case, for the unanimous consent we 
will accept this into the record at this time.
    I do want to thank the panelists today in continuing our 
series to deal with this critically important issue for the 
American people. Not since John F. Kennedy was President I 
think have we had such a focus on the issues of mental health 
and mental illness in this country.
    Your statements today, the passionate statements from the 
family members, and, again, our sympathies and our prayers go 
out to you, the expertise, Dr. Martini, Ms. Levine, and Ms. 
McGraw, and those in our first panel, I ask that you stay in 
contact with us. We have a great deal of respect for what you 
have given to us today and look forward to working with you.
    I would like to also add this. I am very proud of the 
committee members on both sides of the aisle. I think that the 
members here have shown an absolute dedication to working on 
this. The statement we had earlier today, there is something 
like 38,000 suicides, 700,000 emergency room admissions for 
people who have attempted harm to themselves, and all the 
issues involved. This committee is focused more than any other 
subcommittee I think in Congress in our memory and I deeply 
thank the Ranking Member for her compassion and her passion in 
this. I also thank Mr. Braley for his bringing Ms. Thomas in 
today.
    Again, thank you all very much. I would like to say in 
conclusion that I remind members they have 10 business days to 
submit questions to the record. I ask the witnesses to all 
agree to respond promptly to any questions we forward to them.
    With that this committee is adjourned.
    [Whereupon, at 11:35 a.m., the subcommittee was adjourned.]
    [Material submitted for inclusion in the record follows:]

                 Prepared statement of Hon. Tim Murphy

    Last month, I convened a bipartisan forum to address a 
difficult, painful, and much-ignored topic: severe mental 
illness and violence. At our forum, Pat Milam told us about his 
son, Matthew, who had paranoid schizophrenia. For years, Matt 
suffered before taking his own life at just 22 years old.
    During that forum, Mr. Milam explained that his son's 
doctors were unwilling to share concerns about Matt's high risk 
of suicide. Mr. Milam believed that the inability to receive 
and discuss crucial information because of HIPAA was a 
contributing factor in his son's death. Another witness, Liza 
Long, dreaded the difficulties she would face trying to remain 
involved in her own mentally ill son's care once he turns 18 
due to privacy restrictions in HIPAA.
    I've been convening regular public forums in my district to 
discuss the state of our damaged mental health system. At each 
discussion, parents testified about the HIPAA-created 
challenges they experienced in getting the best care for their 
young-adult mentally ill children. As I have just mentioned, in 
some of these cases, the outcome was tragic.
    In 2002 my constituents, Charles and Debi Mahoney, lost 
their son, Chuck, to suicide. The warning signs were there. 
Chuck struggled with severe depression. His fraternity 
brothers, his ex-girlfriend, and college therapist all knew he 
was in danger and warned the college. But college 
administrators said federal privacy laws prevented the school 
from notifying Chuck's parents about his condition. As the 
light was chased from this young man's heart, those who were in 
a position to help did not.
    The stories of the Mahoney's, the Milam's, and those we 
will hear today compel us to act with care and compassion as we 
develop ways to overcome institutional barriers to quality 
mental health treatment.
    Ultimately, parents may be in the best position to help 
children suffering from significant mental illness by providing 
emotional support, medical history, and coordinating care with 
various mental health professionals.
    Today we will examine the ways in which federal privacy 
laws, beginning with whether HIPAA, applied properly or 
improperly, interferes with the quality of patient care or 
compromises public safety or both.
    To be sure, HIPAA's obstruction of health information-
sharing between provider and family in no way is limited to 
mental health. Some of our witnesses will testify that a 
widespread misunderstanding of what HIPAA says can prevent 
individuals with serious long-term medical conditions from 
obtaining appropriate care.
    HIPAA, as initially conceived and enacted, reflected an 
effort to replace a patchwork of state laws and regulations 
impacting the confidentiality of medical information. From the 
start, HIPAA was accompanied by considerable anxiety on the 
part of providers, or the ``covered entities.'' Fearful of new 
penalties for violating HIPAA, doctors and nurses were refusing 
to even talk about a patient's illness with caretakers, all of 
whom were caretakers, spouses, siblings, or those managing the 
affairs of their elderly parent.
    Unfortunately, ``if you want to be safe, don't tell anyone 
anything'' became the prevailing attitude at the expense of the 
patient.
    HIPAA has implications that go beyond healthcare into the 
arena of public safety. According to data from the Government 
Accountability Office, the records of 1.5 million people who 
have been either involuntarily committed to mental health 
treatment, or deemed mentally incompetent by a court of law, 
and are therefore prohibited from owning a firearm, are missing 
from the National Instant Criminal Background Check System, 
also known as NICS.
    Many states have said confusion over HIPAA has prohibited 
them from sharing these records with FBI and helping to keep 
firearms out of the hands of the violently mentally ill.
    I'm encouraged that a letter sent by our committee in mid-
February spurred the Department of Health and Human Services to 
announce last Friday plans to reform HIPAA so states could 
upload these records into NICS. I appreciate the work on this 
issue by HHS Office of Civil Rights Director Leon Rodriguez, 
who will testify here today.
    Our goal with this hearing is to peel away the numerous 
layers of misinformation surrounding HIPAA so that we can 
ensure patients are getting the right treatment and the public 
is kept safe. Sometimes this may involve communication with the 
parents or family of a patient, who often possess unique 
insight into their loved one's condition. At other times it 
involves communication with law enforcement, so providers take 
the right steps to report threats of violence.
    To that end, we will be hearing first from Mr. Rodriguez 
and Mark Rothstein. Mr. Rothstein is a professor of law and 
medicine at the University of Louisville, and a noted expert on 
the HIPAA privacy rule. From 1999 to 2008, he served as chair 
of the statutory advisory committee to the Secretary of HHS on 
health information policy.
    Next, we will hear from a panel of practitioners and family 
members who will comment on their personal experiences with 
HIPAA. Dr. Richard Martini is a Professor of Pediatrics and 
Psychiatry at the University of Utah School of Medicine. Carol 
Levine directs the United Hospital Fund's Families and Health 
Care Project, which focuses on developing partnerships between 
healthcare professionals and family caregivers.
    I want to especially thank the family members who are here 
today--Gregg Wolfe, Ed Kelley, and Jan Thomas. Gregg's son, 
Justin, who was diagnosed with a mental illness and had a 
substance addiction, died of a heroin overdose last December. 
Ed's son, Jon Paul, has had severe mental illness for the last 
14 years. These fathers' efforts to obtain the best possible 
treatment for their sons was repeatedly stymied, in no small 
part due to misinterpretations of HIPAA by those responsible 
for their care. Jan's husband, Ed, a beloved high school 
football coach, was murdered in 2009 by a young man with mental 
illness. The parents of her husband's killer believe that they 
were frustrated by HIPAA in trying to understand the full 
extent of their son's paranoid schizophrenia. To Gregg and Jan, 
I want to extend our deepest sympathies.
    We also have with us today Deven McGraw, Director of the 
Health Privacy Project at the Center for Democracy and 
Technology. This is an important subject, and I look forward to 
exploring this issue with my fellow subcommittee members at 
this hearing.

                                #  #  #

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                Prepared statement of Hon. Steve Scalise

    Mr. Chairman, families across America are grieving and 
searching for answers about why America's mental health system 
has failed them and how it can be fixed. At the center of this 
investigation is a focus on the Health Insurance Portability 
and Accountability Act, otherwise known as HIPAA, which was 
passed more than fifteen years ago in an effort to promote 
patient privacy through the protection of health information 
and records. HIPAA has been highlighted as the source of many 
communication issues and roadblocks between patients, 
providers, and parental guardians. I will be submitting a 
series of questions for the record on behalf of my 
constituents, Pat and Debbie Milam, who tragically lost their 
son Mathew and experienced many obstacles within the mental 
health system. Mr. Chairman, I am committed to helping the 
Milams and other families in similarly frustrating situations 
get to the bottom of these systemic failures in America's 
mental health system. I appreciate your interest and look 
forward to continuing to work with you on this important issue.

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