[Congressional Record Volume 144, Number 39 (Tuesday, March 31, 1998)]
[Senate]
[Pages S2858-S2862]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DASCHLE (for himself, Mr. Kennedy, Mrs. Boxer, Mr. Dodd, 
        Ms. Mikulski, Mrs. Feinstein, Mr. Durbin, Mr. Reed, Mr. Inouye, 
        Mr. Torricelli, Mr. Kerry, Ms. Moseley-Braun, Mr. Wyden, Mr. 
        Lautenberg, Mr. Rockefeller, Mr. Cleland, Mr. Leahy, Mrs. 
        Murray, Mr. Wellstone, Mr. Sarbanes, Mr. Akaka, and Mr. 
        Bingaman):
  S. 1891. A bill to amend the Internal Revenue Code of 1986 to protect 
consumers in managed care plans and other health coverage; to the 
Committee on Finance.

[[Page S2861]]

                the patients' bill of rights act of 1998

  Mr. DASCHLE. Mr. President, I join my colleagues in introducing the 
Patients' Bill of Rights Act of 1998. This legislation has been 
developed cooperatively with Democrats in the House and Senate to 
address a growing concern of the American public, the quality of care 
delivered by health plans and insurance companies. Today, three of 
every four working, insured Americans are in managed care plans, and 
far too many have experienced serious problems with their coverage. We 
all know someone with a horror story in that regard.
  Today, David Garvey of Illinois told us the tragic story of his wife, 
who had taken a ``dream'' vacation to Hawaii with a few of her friends. 
When she arrived in Hawaii, she noticed some bruises on her body. She 
went to a clinic and was quickly admitted to the hospital. She was 
diagnosed with aplastic anemia. Her doctor in Hawaii began a course of 
treatment, and said that she would likely need a bone marrow transplant 
to save her life.
  Several days into the treatment, her HMO called from Chicago and said 
she had to return to Chicago for the treatment and transplant. They 
insisted that she return, even over the strong objections of the doctor 
in Hawaii who said that she was not stable enough to travel and that 
her immune system could not fight infection. Mr. Garvey tried to talk 
to the decisionmakers in the plan, but they insisted that she return to 
Chicago or forego coverage. As the medical bills were adding up, Mrs. 
Garvey had no choice but to fly back to Chicago. During that flight, 
Mrs. Garvey had a stroke, and within days of her return, she developed 
a fungal infection. Ten days later, she died.
  Mr. President, I am outraged by what happened to the Garveys and 
believe we need legislation to protect patients against medically 
inappropriate decisions by health plans that too often put the 
financial bottom line before patients' health care needs.
  The bill I am introducing today would provide enforceable protections 
for millions of patients. It would ensure access to medically needed 
care, including coverage at emergency rooms. It would allow patients 
with serious conditions to see their specialist without asking 
permission each time and would allow women direct access to their ob/
gyn.
  The bill would allow patients denied benefits to appeal decisions 
both within the plan and to an independent, external reviewer. When a 
plan says no to a treatment that your doctor says you need, you should 
be able to appeal to an independent body that has no financial stake in 
the decision. This bill gives every patient that right and says the 
decision has to be made in a time frame that will not put the patient 
at risk.
  The Patients' Bill of Rights provides protection for the provider-
patient relationship by banning gag clauses and limiting inappropriate 
financial incentives to deny care. It also would put a stop to 
arbitrary decisions by plans to limit care, such as decisions to 
discharge mastectomy patients from the hospital before it is medically 
appropriate.
  Finally, the bill would hold plans legally accountable for decisions 
to deny or delay care that result in harm to patients. Today, 125 
million Americans who get their health care through their employer have 
little recourse if their plans' decisions harm them, even when the 
decisions lead to death. Doctors and hospitals are held accountable for 
their decisions, but health plans are not, and that is something that 
needs to change.
  The Patients' Bill of Rights is an important proposal that has the 
backing of the American Medical Association, Consumers Union, Families 
USA, the National Association of Children's Hospitals and numerous 
other organizations that advocate for quality patient care.
  I hope we can engage in productive debate on this issue in the coming 
months and pass legislation to improve the quality of health care for 
the American people.
  Mr. KENNEDY. Mr. President, the time for action to protect patients 
and curb insurance company abuse has come. We face a crisis of 
confidence in health care. A recent survey found that an astonishing 80 
percent of Americans now believe that their quality of care is often 
compromised by their insurance plan to save money. One reason for this 
concern is the explosive growth in managed care. In 1987, only 13 
percent of privately insured Americans were enrolled in HMOs. Today 75 
percent are in some form of managed care.
  At its best, managed care offers the opportunity to achieve both 
greater efficiency and higher quality in health care. In too many 
cases, however, the priority has become higher profits, not better 
health. Conventional insurance companies, too, have abused the system 
by denying coverage for treatments that their customers need and that 
their faithful payment of premiums should have guaranteed.
  And the issue is not just confidence. It goes to the heart of the 
issue of quality care and to the fundamental doctor-patient 
relationship. In California, a Kaiser Foundation study found that 
almost half of all consumers reported a problem with their health 
plan--and substantial proportions reported that the plan's misbehavior 
caused unnecessary pain and suffering, delayed their recovery, or even 
resulted in permanent disabilities. Projected to the national level, 
these results indicate that 30 million Americans actually developed 
additional health problems because of their plan's treatment of them, 
and a shocking 11 million developed permanent disabilities.
  The list of those victimized by insurance company abuse grows every 
day.
  A baby loses his hands and feet because his parents believe they have 
to take him to a distant emergency room rather than the one close to 
their home.
  A Senate aide suffers a devastating stroke which might have been far 
milder if her HMO had not refused to send her to an emergency room--the 
HMO now refuses to pay for her wheelchair.
  A doctor is denied future referrals because he tells a patient about 
an expensive treatment that could save her life.
  A child suffering from a rare cancer is told that life-saving surgery 
should be performed by an unqualified doctor who happens to be on the 
plan's list, rather than by the nearby cancer specialty center equipped 
to provide quality care.
  A San Diego paraplegic asks for referral to a rehabilitation 
specialist. Her HMO refuses, and she develops a severe pressure wound 
that a rehabilitation specialist would have routinely checked and 
treated. She is forced to undergo surgery, and has to be hospitalized 
for a year with round-the-clock nursing care.
  A woman is forced to undergo a ``drive-by'' mastectomy and is sent 
home in pain, with tubes still dangling from her body.
  The list goes on and on.
  The opponents of action are already waging a calculated and well-
financed campaign of disinformation arguing that protecting patient's 
rights is the same as massive government mandates and vastly increased 
costs. But the American people know better.
  Opponents of the legislation try to create a false dichotomy between 
relying on competitive market forces and relying on regulatory 
standards. In fact, this amendment helps competition by establishing a 
level playing field between those who compete by providing quality care 
at a reasonable cost and those who try to compete by attracting only 
healthy enrollees and denying those who fall ill the care they have 
promised.
  This legislation guarantees people the rights that every scrupulous 
insurance company already provides. These rights are common-sense 
statement of components of quality care that every family believes they 
have been promised when they signed up for coverage and faithfully paid 
their premiums.
  Let me cite a few of these common-sense rights specified in our 
legislation. They include access to an appropriate specialist when your 
condition requires specialty care. They allow people with chronic 
illnesses or disabilities to have standing referrals to the specialists 
they need to see on a regular basis. They assure that patients who need 
a prescription drug to save their life or their health can have access 
to it even if it is not included in their plan's formulary.
  They assure that a person suffering from serious symptoms can go to 
the nearest emergency room without worrying that their plan will deny 
coverage. No patient with the symptoms of a heart attack should be 
forced to

[[Page S2862]]

put their life at risk by driving past the emergency room down the 
street to the network provider an hour or more away. No patient with 
symptoms of stroke should be forced to delay the treatment to the point 
where paralysis and disability is permanent, because a clerk two 
thousand miles away does not respond promptly and appropriately. And no 
patient who goes to an emergency room with symptoms of a heart attack 
that proves to be a false alarm should suffer a real heart attack when 
a bill for thousands of dollars arrives that the health insurer has 
refused to pay.
  This amendment also says that any reform worthy of the name 
must guarantee that insurance plans meet the special needs of women and 
children. Women should have access to gynecologists for needed 
services. No women with breast cancer should be forced to endure a 
``drive-by'' mastectomy against the advice of her doctor.

  No child with a rare childhood cancer should be told that the 
urologist who happens to be in the plan's network will treat him--even 
if that urologist has no experience or expertise with children or with 
that rare cancer.
  Too many desperate patients--especially cancer patients--know that 
their only hope for survival is participation in a clinical trial. Such 
trials not only offer hope to patients, they also advance our knowledge 
and lead to better treatments for dread diseases. Many insurers have 
routinely paid for the medical costs associated with clinical trials, 
because they knew they offered benefits for patients and because the 
patients would incur medical costs in any event, even if they were not 
part of the trial. But today, many insurers are backing away from that 
constructive policy. Managed care plans, in particular, have often 
denied their patients the ability to participate in such trials.
  Our legislation provides patients a right to participate in such 
trials if stringent conditions are met. There must be no standard 
treatment that is effective for the patient, and the patient must be 
suffering from a serious or life-threatening illness. The trial must be 
funded by the NIH or another government agency meeting NIH standards. 
And the trial must offer the patient a realistic hope for clinical 
benefit.
  Patients need the right to appeal decisions on their plans to 
independent third parties. Today, if a health plan breaks its promise, 
the only recourse for most patients is to go to court--a time-consuming 
and costly process that may not provide relief in time to save a life 
or prevent a disability.
  Independent review was recommended unanimously by the President's 
Commission. It has worked successfully in Medicare for four decades. 
Working families deserve the basic fairness that only an impartial 
appeal can provide. Without such a mechanism, any ``rights'' guaranteed 
to patients exist on paper only--and they are scarcely worth the paper 
on which they are written. When the issues are sickness and health--and 
often as serious as life and death--no health insurance company should 
be allowed to be both judge and jury.
  When health plan misconduct results in serious injury or death, 
patients and their families should be able to obtain accountability. 
Every other industry in America can be held responsible for its 
actions. Why should health plans, whose decisions truly can mean life 
or death, enjoy this unique immunity?
  Reforms must protect the integrity of the doctor-patient 
relationship. ``Gag clauses'' and improper incentive arrangements 
should have no place in American medicine.
  And finally, everyone should agree that noncontroversial steps to 
improve quality and provide greater patient information should be part 
of reform.
  This amendment should not be controversial for any member of the 
Senate who is serious about protecting patients from insurance company 
abuse. Its basic provisions were included in legislation introduced by 
Democrats in the House and Senate. That legislation is supported by the 
American Medical Association, the Consortium of Citizens with 
Disabilities, the National Alliance for the Mentally Ill, the National 
Partnership for Women and Families, the National Association of 
Children's Hospitals, the AFL-CIO, and many other groups representing 
physicians and other health care providers, children, women, families, 
consumers, persons with disabilities, Americans with serious illnesses, 
and working families.
  It is rare for such a broad and diverse coalition to be assembled in 
support of any legislation. But ending these flagrant abuses will help 
every American family.
  The choice is clear. The Senate should stand with patients, families, 
and physicians. We must not stand with the well-heeled special 
interests that put profits ahead of patients.
                                 ______