[Congressional Record Volume 142, Number 46 (Friday, March 29, 1996)]
[Senate]
[Pages S3216-S3217]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE (for herself and Mr. Leahy):
  S. 1655. A bill to amend the Public Health Service Act to provide, 
with respect to research on breast cancer, for the increased 
involvement of advocates in decision making at the National Cancer 
Institute; to the Committee on Labor and Human Resources.
      By Ms. SNOWE:
  S. 1656. A bill to permit individuals to continue health plan 
coverage of services while participating in approved clinical studies; 
to the Committee on Labor and Human Resources.


                       BREAST CANCER LEGISLATION

  Ms. SNOWE. Mr. President, I introduce two important pieces of 
legislation which promise to be of great significance to women with 
breast cancer: the Consumer Involvement in Breast Cancer Research Act 
of 1996, and the Improved Patient Access to Clinical Studies Act of 
1996.
  Breast cancer is a national health crisis of enormous proportions. 
Each year, breast cancer strikes approximately 182,000 women, resulting 
in 46,000 deaths. It has become the most common form of cancer and the 
second leading cause of death among American women. An estimated 2.6 
million women in the United States are living with breast cancer, 1.6 
million have been diagnosed with the disease, and an estimated 1 
million women do not yet know they have breast cancer.
  Some 1 out of 8 women in our country will develop breast cancer in 
her lifetime, up from one out of 14 in 1960. In fact, this year, a new 
case of breast cancer will be diagnosed every 3 minutes, and a woman 
will die from breast cancer every 11 minutes.
  Breast cancer is a crisis that has tragically claimed the lives of 
almost 1

[[Page S3217]]

million women of all ages and backgrounds since 1960. It has become the 
leading cause of death for women age 40 to 44, and the leading cause of 
cancer death in women age 25 to 54.
  In 1994, 900 Maine women were diagnosed with breast cancer. This is 
the most commonly diagnosed form of cancer among Maine women, and 
represents more than 30 percent of all new cancer among women in Maine.
  Over the past few years, we have made significant gains in funding 
for breast cancer research. In fiscal year 1991, Congress spent $92.7 
million on breast cancer research at the National Institutes of Health. 
By fiscal year 1995, spending had increased to $308.7 million. 
Moreover, the Department of Defense has received $460 million over the 
past 3 years to undertake breast cancer research.
  However, funding alone is not enough. We must work to ensure that the 
most worthy and innovative projects are pursued and funded. This means 
funding projects which victims of breast cancer believe are important 
and meaningful to them in their fight to live with this disease.
  Over the past 3 years, the Department of Defense has included lay 
breast cancer advocates in breast cancer research decision making. The 
involvement of these breast cancer advocates has helped foster new and 
innovative breast cancer research funding designs and research 
projects. While maintaining the highest level of quality assurance 
through peer review, breast cancer advocates have helped to ensure that 
all breast cancer research reflects the experiences and wisdom of the 
individuals who have lived with the disease. In addition, breast cancer 
advocates provide a vital educational link between the scientific and 
lay communities.
  My bill, the Consumer Involvement in Breast Cancer Research Act of 
1996, urges the National Institutes of Health to follow the DOD's lead. 
It urges NIH to include breast cancer advocates in breast cancer 
research decision making, and to report on progress that the Institute 
is making next year.
  I believe that this legislation provides the critical next step in 
making breast cancer research more responsive to the needs of millions 
of American women living with breast cancer.
  But it is not the only step we need to take. People suffering from 
diseases with no known cure often have access to the latest, most-
innovative therapies only through clinical trials. This is often the 
case for women with breast cancer. Yet insurance companies regularly 
deny coverage for such treatments on the basis that they are 
experimental or investigational.
  As a result, many patients who could benefit from these potentially 
life-saving investigational treatments do not have access to them 
because their insurance will not cover the costs. Denying reimbursement 
for these services also impedes the ability of scientists to conduct 
important research, by reducing the number of patients who are eligible 
to participate in clinical trials.
  The second bill I am introducing today, the Improved Patient Access 
to Clinical Studies Act of 1996, addresses this problem. This bill 
would prohibit insurance companies from denying coverage for services 
provided to individuals participating in clinical trials, if those 
services would otherwise be covered by the plan. This bill would also 
prevent health plans from discriminating against enrollees who choose 
to participate in clinical trials.
  Mr. President, March is Women's History Month. We should take this 
opportunity to celebrate the important gains we have made over the past 
few years in the area of women's health research. At the same time, we 
must also recognize how far we still have to go. I believe that the 
bills I have introduced today represent continued progress in the fight 
against breast cancer, and I urge my colleagues to support them.
                                 ______