[Weekly Compilation of Presidential Documents Volume 34, Number 29 (Monday, July 20, 1998)]
[Pages 1383-1388]
[Online from the Government Publishing Office, www.gpo.gov]

<R04>
Remarks in a Roundtable Discussion on the Patients' Bill of Rights

July 15, 1998

    The President. Hello, everybody. I'd like to make a very brief 
opening statement, beginning with expressing my thanks to whoever's 
about to turn that tape recorder off. [Laughter] I'd like to thank Dr. 
Dickey, Dr. Smoak, Dr. Anderson, and all the people at the AMA for 
having us. I thank the members of our roundtable for joining us, 
including Secretary Shalala, Secretary Herman, Secretary West, Dr. 
Kizer, the director of the health agency at the VA. And I want to say to 
the members of the press who are here, I am joined today by patients and 
their families, by doctors, nurses, and other health care providers who 
have widely different experiences and perspectives, but all agree that 
we very badly need a Patients' Bill of Rights.
    More than 160 million Americans are in managed care today. At best, 
the system can drive health care costs down and make health care more 
affordable and accessible for more Americans. We should all be 
encouraged representing at best that a coalition of 25 progressive HMO's 
this week endorsed the Patients' Bill of Rights. But as we will hear in 
a few minutes, at its worst, managed care can also dehumanize health 
care, hamstringing doctors' decisions, alienating patients, even 
endangering lives.
    In an increasingly complicated health care system we need a simple 
standard. Traditional care or managed care, all Americans are entitled 
to quality care. That is why in my State of the Union Address I asked 
Congress to put progress ahead of partisanship and to pass a Patients' 
Bill of Rights.
    To do our part to meet this challenge, I signed an Executive order 
back in February to extend the protections of the Patients' Bill of 
Rights to 85 million Americans in Federal health plans. Today we're 
taking further action. I am pleased to announce that the Department of 
Veterans Affairs, which provides health services to more than 3 million 
veterans, is putting in place a new procedure to help those veterans 
appeal health decisions, one of the most important protections in our 
Patients' Bill of Rights, and I thank Secretary West for that action.
    To ensure, however, that every American is protected by a Patients' 
Bill of Rights, Congress has to act. In the remaining days left in this 
legislative session, once again I ask Congress to pass a strong and 
enforceable Patients' Bill of Rights that guarantees access to 
specialists so that people with cancer,

[[Page 1384]]

heart disease, and other life-threatening illnesses can get the health 
care they need; that guarantees continuity of care--for example, so that 
pregnant women can have the same doctor throughout their pregnancy, even 
if a doctor is dropped from a health plan; a bill that makes these 
rights real by guaranteeing a remedy to people who have been injured or 
lost family members as a result of bad decisions; a bill that guarantees 
there will be no secret financial incentives for doctors to limit care. 
That is the kind of comprehensive Patients' Bill of Rights America needs 
and deserves. We need, again I say, progress, not partisanship.
    And now I would like to hear from all of you. I would just start--I 
have a few questions I want to ask, but I think it's important for you 
basically to make a brief opening statement and tell us what your 
experiences have been. And, Mary, if you don't mind, I'd like to begin 
with you.

[Mary Kuhl described her experience with a health maintenance 
organization (HMO) in the aftermath of her husband's heart attack. The 
HMO denied rehabilitation services and diagnostic procedures because the 
Kuhls were not certified. Ms. Kuhl related her frustrations with how HMO 
rules of procedure limited her husband's ability to get the care he 
needed and would not allow the recommended time in a hospital.]

    The President. You mean the HMO would only let you stay 2 days?
    Ms. Kuhl. Yes, they would only let him stay 2 days. We did all that, 
and he never got on the list, he just--on December 28, 1989, he dropped 
dead in our front yard and died in my arms. And I just don't think HMO's 
should have that right to make a decision whether you're going to live 
or die. I think it should be up to the doctors, because all the doctors 
agreed that he needed to be in St. Louis on July 6. So that's my story, 
Mr. President.
    The President. Well, if we had this kind of legislation, you would 
have had that right.
    Ms. Kuhl. Well, he did start a lawsuit against the insurance company 
and it went through all the courts. It went through the Federal court; 
it went to the court of appeals; and then finally it was in the Supreme 
Court, but they kicked it out, too, because of the bill, ERISA----
    The President. But ours would take care of that; our legislation 
would take care of the legal bar to your remedy.
    Ms. Kuhl. I would be very happy that nobody else had to go through 
this.
    The President. Thank you.
    Mr. Garvey.

[David Garvey told the story of his wife, who was diagnosed with 
aplastic anemia while on vacation in Hawaii in 1994 and was recommended 
for a bone marrow transplant. It was determined by doctors in Hawaii 
that Mrs. Garvey's condition made it dangerous for her to travel home to 
Chicago for treatment. Her HMO physician in Chicago agreed with treating 
her in Hawaii, but was immediately taken off her case and the new 
doctor, without examination or consultation with doctors on the case, 
insisted she return to Chicago for treatment or her bills would not be 
covered. Mrs. Garvey's condition left her without an immune system. On 
her flight home, she suffered a stroke, developed a fungal infection, 
which kept her too unstable for bone marrow transplants, and died 9 days 
later. Mr. Garvey described the devastation his wife's death had caused 
his family and expressed his belief that HMO's are more interested in 
money than human life.]

    The President. If this legislation were to pass, one of the things 
that would happen--this would also have been relevant to your situation 
in St. Louis--is that people would be eligible for out of the network--
the so-called out of the network treatment--if it was indicated as being 
in the best interest of the patient, and also always held the same 
services that are in the nature of an emergency.
    We hear stories like this all the time. Thank goodness very few of 
them result in death. But someone who's not there on the scene, who's 
not a physician, should not be second-guessing a doctor who's there on 
the scene prescribing a certain treatment.
    Mr. Garvey. Yes. It's a shame, but that's what happens.
    The President. I don't think that's ever what anyone intended to 
happen from managed care, and I think that it's clear to me that just 
looking around the country, that

[[Page 1385]]

even though a lot of States have passed these Patients' Bill of Rights, 
there's no real uniformity to it, and there ought to be a clear national 
rule that would cover both of the cases here that you have mentioned.
    Dr. Evjy, do you want to comment on this? And if you could all speak 
up a little bit so they can hear you. I know we're getting it--this is 
feeding into the mult box, but we need to talk a little bit louder.

[Jack Evjy, a medical oncologist, recalled when his daughter discovered 
a lump in her breast and had to persuade her managed care provider to 
properly diagnose the problem with a biopsy. She eventually had to 
change doctors to get anything done and ultimately lost both breasts. 
Dr. Evjy also told the story of a patient who suffered from lymphedema, 
and when he recommended that the patient see specialists, the patient's 
health care provider took months to give permission for the treatment. 
Dr. Evjy expressed his support for a Patients' Bill of Rights.]

    The President. Did your daughter, when she had these tests, did she 
have to change doctors and medical plans?
    Dr. Evjy. She did. She didn't change plans, but she changed doctors.
    The President. Because one of the things that we hear a lot of 
complaints about that is not totally unrelated to the story that Mary 
and David had in their lives, but has more specific application to a 
person like you, is that a lot of people complain that basically there's 
not access to specialists and specialist care at the time they needed 
them in these plans. Your daughter deserves a lot of credit----
    Dr. Evjy. She's feisty----
    The President. That's what we really need, is aggressive health care 
providers urging people to get these tests, not flip them off. Because a 
lot of people go into denial, and they don't want to deal with these 
tests, and the responsible thing is for the physician to get them to do 
that.
    Dr. Evjy. I mean, when you're sick, Mr. President, and you have the 
burden of worrying about your life and well-being, the last thing you 
need is to have to fight with a bunch of other people to get the care 
which is essential to well-being. It's just not right.
    The President. Well, thank you for sticking up for your folks.
    Dr. Evjy. Thank you.
    The President. Beverly Malone is the president of the American 
Nurses Association, and maybe she would like to talk a little bit about 
this from her perspective.

[Ms. Malone told a similar story of a young woman who discovered lumps 
in her breast but was told by her provider that malignancy in someone 
her age was unlikely. By the time her symptoms required seeing a 
specialist, her condition had advanced significantly. Ms. Malone said as 
a nurse she sees a lot of this kind of thing, and she expressed her 
support for a Patients' Bill of Rights and thanked the President for his 
work on the issue.]

    The President. Thank you.
    Mr. Fleming, tell us your story.

[Mick Fleming told the story of his younger sister who also discovered a 
lump in her breast. After a mastectomy, it was discovered that the 
cancer had spread to her lungs. Specialists explained to her that there 
was only a 2 to 3 month window for a procedure where high-dose 
chemotherapy and a bone marrow transplant could save her life. Mr. 
Fleming said it required preauthorization from her insurance carrier or 
$250,000 in cash before doctors could begin treatment. Her insurance 
carrier did not preauthorize and after a 4-month delay, the insurance 
carrier told Mr. Fleming's sister that the procedure was experimental 
and it was denied. The Fleming family hired attorneys to challenge the 
decision, and the insurance carrier then authorized the treatment. 
However, the cancer had by then spread to her brain, and she died 10 
months later. Mr. Fleming said congressional action is necessary to 
change the system, and he expressed support for a Patients' Bill of 
Rights.]

    The President. Carol Anderson is a billing manager in an oncologist 
office. You've heard all these stories. Have you seen this happen a lot? 
I think it's important, since you do this, and that we've got the press 
coverage here, that you say whether or not you think we looked around 
and found all these people who are just needles in haystacks or if 
they're

[[Page 1386]]

typical stories. That's what we have to convince the Congress of. This 
is not unusual. We haven't found the only three people in America who 
could tell these stories.

[Ms. Anderson agreed, saying denials such as the ones in the 
participants' experiences are common and that appeals processes are not 
effective. She offered her own example of this by telling of a 12-year-
old boy who developed a cancerous bone lesion on his leg. The doctor 
recommended a treatment, but the insurance carrier would only authorize 
amputation. After a 4-month appeal of the treatment dispute, the boy's 
leg had to be amputated. She said had he been given the treatment 
initially, he would have his leg today. Ms. Anderson said most hospitals 
operate in debt and require the money from patients up front, and the 
problems with getting authorization from carriers hinders proper care. 
She expressed her hope that political partisanship would not delay 
progress on resolving such problems.]

    The President. I honestly believe that--I don't see how--I don't 
think that this has anything to do with any kind of--it's not a 
political issue. And I think everybody who's ever personally experienced 
it feels the same way.
    And the only thing I would like to emphasize for the--especially for 
the public record here is that one of the things that we have proposed, 
that the insurers have been so resistant to in our bill, is an appeals 
process--some way of enforcing the substantive guarantees of the 
Patients' Bill of Rights. But you have--we just sat here now and heard 
all these examples of your tragedy, your tragedy, your tragedy, and your 
daughter slipped the noose so she saved her life, which demonstrates 
that medical care delayed might as well be denied. I mean, delayed 
medical care can be a death sentence, pure and simple. And maybe you 
save money that way if you're running the operation, but that's not what 
it is set up to do.
    I just want to say, from my point of view, your very brave and 
moving statements today have made an utterly overwhelming case that, 
yes, we need very clear substantive rights and disclosure, as Mick said, 
in the law, but you've got to have some way of enforcing this because--
look, I deal with this all the time in other less tragic contracts. We 
have trade disputes with other countries. They know that if we're right 
and they're wrong and they can drag it out until kingdom come, it 
doesn't matter if we win. And I can give you lots of other examples.
    I'm a lawyer. From the time I was in law school, we were taught that 
justice delayed is justice denied. And we spend literally--the legal 
profession spends years and years and years of time trying to figure out 
how to expedite processes without doing injustice to either side. This 
is a clear case of that principle where the stakes are a heck of a lot 
higher than they are in virtually any other area of our national life. 
And so I think--I don't see how anybody could listen to all of you and 
walk away from the responsibility to pass this bill.
    Nancy, would you like to say anything?

[Dr. Nancy W. Dickey, president, American Medical Association, said the 
solution does indeed appear to be political. She said the health care 
delivery system is too often today hampered by accountants and clerks 
that affect the decisionmaking. She said State laws in the country have 
attempted to strike the balance between proper care and delivery 
processes, but those laws were instantly appealed in court. Dr. Dickey 
thanked the President for his leadership on the issue, but stated that 
the medical community has been waiting for legislative action since the 
103d Congress. She also supported the Patients' Bill of Rights.]

    The President. Secretary Shalala and Secretary Herman cochaired this 
quality health care commission for me, and we had representations from 
the nurses, the doctors, and consumer groups, from business groups and 
insurers. And they came up with the recommendation of passing a strong 
Patients' Bill of Rights. And I wondered if either one of them would 
like to say something or ask any of you a question and to comment about 
where we are.

[Secretary of Labor Alexis M. Herman spoke of the need to strengthen the 
Employee Retirement Income Security Act of 1974 (ERISA) and said a right 
without a remedy is really no right at all. Secretary Herman

[[Page 1387]]

suggested looking into three things to strengthen ERISA protection: the 
relationship between right and remedy, faster and fairer appeals, and 
protections for those who are wrongly denied care. Secretary of Health 
and Human Services Donna E. Shalala noted that there is a lot of 
discussion about Americans wanting less Government, but this is an issue 
where they would like Government attention. She said a Patients' Bill of 
Rights is necessary for people to get the medical attention they 
deserve.]

    The President. I would like to just say, again, I think it's 
important to point out that there are a lot of good managed care 
operations. They are put at an unfair advantage when other people behave 
in an unscrupulous way. If you were running a managed care operation and 
you did everything you could do to make sure these decisions were made 
like this--[at this point, the President snapped his fingers]--so nobody 
ever died from delay, and you were willing to pay a little more to do it 
and risk a little more and invest a little more--why should you be put 
at a competitive disadvantage because somebody else is out there putting 
lives at risk?
    So I think the industry itself, the good people in the industry, 
deserve this. And they would be better off if we had this bill, because 
the people who are out there doing the right thing anyway shouldn't ever 
be at any kind of financial disadvantage.
    Alexis asked a question--I don't know, maybe Carol or some of the 
doctors, somebody else would like to answer it--but when you think about 
all the experiences that we heard about, the delays--how come his wife 
got put on a plane when she should have been taken care of in Hawaii; 
why didn't they get an answer in 30 days so this procedure could be 
performed; why didn't his sister get her answer quicker? How do you deal 
with what--even if this bill passes exactly as we proposed it, okay--
even if the bill passes exactly as we've proposed it, there will be 
health care plans that have certain premiums in return for certain 
coverage, and somebody has to make a judgment about whether--what is 
covered. What's the right way?
    Well, I was struck when Carol was describing this, about how long--
how many times she had to keep calling back before she got to somebody 
that even knew as much as you do about it, much less as much as a doctor 
does. So, what is the right answer, practically, to the systems that the 
HMO's and the insurers should have for making these decisions in a 
timely fashion so we're not out there letting people die just by kicking 
the can down the road?

[Ms. Anderson answered that if a clerk cannot give authorization for a 
procedure, the request should be passed up to a more professional level 
immediately and addressed in a timely fashion rather than denied.]

    The President. Dr. Dickey, has the AMA spoken to this directly?

[Dr. Dickey said the AMA has a number of recommendations, including more 
straightforward processes with fewer stages to pass through so that 
patients know their options faster and establishing a timeline on 
authorization. She also noted the effectiveness of forcing providers to 
take responsibility by taking names for the possibility of future legal 
action.]

    The President. It looks to me like, too, there ought to be very, 
very clear rules whenever a doctor certifies that the condition is life-
threatening. They ought to--I think they ought to be able to kick it 
right up to the--make a decision in 72 hours, then that gives--then they 
ought to have no more than a week for reconsideration, and then you 
ought to have your remedy kick in so you can get--the whole thing will 
be over. And I think the court should give whatever--however the 
remedies work--it depends on whether our bill passes as it is, but that 
ought to be resolved in a limited amount of time.
    I mean, they are--when my mother got sick and was considered for 
various kinds of treatment, most of which she turned down because she 
thought she was too old and didn't want to bump anybody else out of it, 
but I really, just by sort of filling my head with all of this, I became 
much more sensitive about the time. I mean, to a lot of these people, 
the difference in 48 hours is an eternity about whether a given 
procedure will work or not--and you're just out there fiddling around. I 
mean, it's just--it's absolutely inexcusable.

[[Page 1388]]

    And a lot of these people--like when you ask them for their name--a 
lot of these people are following the path of least resistance. They're 
doing what they think will please the people for whom they work. They're 
not out there trying to kill your patients. They're out there doing what 
they think is going to please the people that cut them a check every 2 
weeks. And we've got to change that.

[Secretary Shalala suggested that the Patients' Bill of Rights would 
actually save money because it would reduce the cases of wrongly denied 
coverage for symptoms of a disease at an early, perhaps curable, and 
less expensive stage. Dr. Evjy agreed, and noted that the insurance 
system has a responsibility to provide patients with accurate options 
much the way doctors must explain conditions to their patients. Mr. 
Fleming noted that the ERISA laws that govern the majority of health 
plans are outdated and out of pace with medical technology and that 
insurance carriers must also keep pace with modernity. Dr. Kenneth W. 
Kizer, Under Secretary for Health at the Veterans Health Administration, 
endorsed Mr. Fleming's point and stressed the importance of definite 
timelines in providing care. Secretary Shalala said congressional action 
is necessary to give the public the rights the President gave to those 
in Federal plans. A participant noted that the Patients' Bill of Rights 
is instrumental in ensuring information and that information will 
empower patients and providers to work collectively. Dr. Dickey agreed, 
expressed her appreciation for the President's leadership on the issue, 
and said she looks forward to working with him to enact such 
legislation.]

    The President. I want to thank all of you. This has been very 
helpful to me and to members of our administration and I hope to the 
press and to the public. So thank you for hosting us. And I want to say 
a special word of thanks to Mary and to David and to Mick and Dr. Evjy 
and to Carol for relating some painful personal experiences.
    And I would just leave you with this thought: For me, this is about 
even more than health care; this is about how people feel about America. 
I mean, for 6 years I've worked hard to make this country work again, to 
give people the sense that they can be really not only proud of America, 
but they can feel that it is a fair and decent place where everybody has 
a chance. And that obviously has to apply to decisions of life or death 
in the health care field, just as much as going to vote, getting a job, 
living in a safe neighborhood.
    These stories are not the kind of stories any American of conscience 
would ever want to be told in the United States. And it's not the United 
States we want, as we stand on the verge of a new century. I know it's 
been painful for you, but you've done your country a great service 
today, and I thank you very much. Thank you.

Note: The President spoke at 2 p.m. at the American Medical Association. 
In his remarks, he referred to Randolph D. Smoak, Jr., M.D., chairman, 
and E. Ratcliffe Anderson, Jr., M.D., executive vice president, American 
Medical Association.