[Congressional Record (Bound Edition), Volume 145 (1999), Part 10]
[Senate]
[Page 13757]
[From the U.S. Government Publishing Office, www.gpo.gov]


[[Page 13757]]

                      THE PATIENTS' BILL OF RIGHTS

  Mr. HARKIN. Mr. President, I will make a few comments about the 
importance of managed care reform and the


importance of passing a strong Patients' Bill of Rights in this 
Congress.
  The bill that my colleagues on the other side of the aisle want us to 
consider, I believe, is fundamentally flawed. First, it fails to cover 
two-thirds of privately insured Americans. Secondly, it fails to 
prevent insurers from arbitrarily interfering with the decisions of a 
patient's treating physician. And, third, it is weak in giving 
consumers the right to sue their insurance companies for faulty 
decisions to withhold care.
  Today, I want to focus on a few issues that have critical importance 
to me: access to specialty care, network adequacy, and genetic 
discrimination.
  When we marked up the bill in the Health, Education, Labor and 
Pensions Committee, I offered an amendment to ensure that patients have 
access to the specialty care they need. I intend to offer it again if 
we are ever allowed a full and fair debate on this bill.
  This is a critical issue for people with disabilities, women with 
breast cancer, and others with chronic health conditions. But it is 
important for all Americans. The inability to access specialists is the 
number-one reason people give when they leave a health plan, and it is 
a top issue they want Congress to address.
  The Republican bill is deficient in this area. Aside from two minor 
provisions regarding access to OB/GYNs and pediatricians--access that 
almost all health plans already provide--there is nothing in the 
Republican bill that guarantees access to specialty care such as that 
provided by neurologists, pediatric oncologists, rehabilitation 
physicians, and others.
  We need to ensure that people can see specialists outside of their 
HMO's network at no additional cost if specialists in the plan's 
network cannot meet their needs. We need to allow a specialist to be 
the primary care coordinator for patients with disabilities or life-
threatening or degenerative conditions. And we need to provide for 
standing referrals for people who need ongoing specialty care, which 
enables them to go straight to the specialist instead of jumping 
through hoops with primary care doctors or insurance companies.
  These provisions would not create onerous new burdens on plans. In 
fact, many plans already allow specialists to be primary care 
coordinators, and they let people have standing referrals. Most 
importantly, they address the tragic cases we have heard about that 
stem from delay or denial of access to specialists.
  Finally, helping people get timely access to specialty care is not 
just smart and compassionate policy; it will also help minimize the 
need for litigation that results from a failure to have access.
  Another amendment I have been working on ensures that each insurance 
plan has sufficient providers in its network to deliver the care that 
is promised. Again, this is an area where the Republican bill is, I 
think, very inadequate. There is no provision in the Republican bill to 
ensure network adequacy. This is a very important issue in my State of 
Iowa.
  My amendment ensures that every network plan has a sufficient number 
and mix of providers to deliver the covered services.
  It also requires plans to incorporate a primary care physician in 
their network who is within 30 minutes or 30 driving miles of a 
patient's home. If the plan cannot include patients within that 
distance, patients need to be allowed to go ``out-of-network'' to 
obtain the care they need. In other words, no one should have to drive 
more than 30 miles or 30 minutes to see a primary care physician.
  It is important to understand what is happening now. Many managed 
care companies now contract only with urban-based providers. Not only 
does this require patients to travel considerable distances to receive 
basic health care, but these urban-based networks also weaken the rural 
health infrastructure by shutting local doctors and local clinics out 
of the network. This is wrong and must be stopped.
  I have been working also on the genetic issues of this since the 
early 1990s when I introduced an amendment to the HIPAA that prohibited 
genetic discrimination by group health plans. As ranking member of the 
Labor-HHS appropriations subcommittee, I have also been and continue to 
be a strong supporter of the Human Genome Project. In the HELP 
Committee, the authorizing committee, I worked with Senators Dodd and 
Kennedy on a genetic discrimination amendment. I intend to continue 
working on this issue when and if we get a Patients' Bill of Rights on 
the floor.
  We have all discussed at length the importance of prohibiting 
discrimination on the basis of all predictive genetic information in 
all health insurance markets. I am pleased that the Republican bill 
recognized that we need to prohibit discrimination in the group and in 
the individual markets, and that we need to prohibit discrimination not 
only on the basis of genetic tests but on the basis of a person's 
family history.
  Still, the Republican bill failed to address several other equally 
critical issues in this area. The bottom line is that we must prohibit 
discrimination by insurers and employers.
  To prohibit discrimination in one context only invites discrimination 
in the other. For example, if we only prohibit discrimination in the 
insurance context, employers who are worried about future increased 
medical costs will simply not hire individuals who have a genetic 
predisposition to a particular disease.
  Similarly, we must prohibit health insurance companies from 
disclosing genetic discrimination to other insurance companies, to 
industry-wide data banks, and employers. If we really want to prevent 
discrimination, we should not let genetic information get into the 
wrong hands in the first place.
  Finally, if we really want a prohibition of genetic discrimination to 
have teeth, we have to have strong remedies and penalties. The $100-a-
day fine against health insurers that my colleagues across the aisle 
have proposed will do little to prevent health insurers from 
discriminating, and it does nothing to compensate a victim of such 
discrimination. We must do better than this.
  Mr. President, let me say that we must not pass up this chance to 
make true and significant reforms to managed care programs. This is the 
issue that the American people have said they most want the Congress to 
address. And they are watching us carefully to see if we will enact 
real reform or a series of meaningless sound bites.
  If we take strong action that allows clear-cut access to specialty 
care, ensures network adequacy, and prohibits genetic discrimination, 
we will have gone a long way to providing real reform and providing for 
a meaningful Patients' Bill of Rights.
  I yield the floor.
  Mr. LEAHY addressed the Chair.
  The PRESIDING OFFICER. The Senator from Vermont is recognized.
  Mr. LEAHY. Mr. President, I ask unanimous consent that I be allowed 
to speak for up to 10 minutes on a subject involving landmines.
  The PRESIDING OFFICER. Without objection, it is so ordered.

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