107th Congress

Advancing the Health of the Amercian People: Addressing Various Public Health Needs --- Hearing Before the House Committee on Energy and Commerce -- Subcommittee on Health -- June 27, 2001

Members Present

Representatives Michael Bilirakis (R-FL), Chairman; Sherrod Brown (D-OH), Ranking Member; W. J. "Billy" Tauzin (R-LA), Committee Chairman; Tom Barrett (D-WI); Ed Bryant (R-TN); Robert Ehrlich, Jr. (R-MD); Anna G. Eschoo (D-CA); Gene Green (D- TX); James Greenwood (R-PA); Frank Pallone, Jr. (D-NJ); Joseph Pitts (R- PA); CliffORD Stearns (R-FL); Bart Stupak (D-MI); Fred Upton (R-MI); and Roger Wicker (R- MS).

Witnesses

Ed McMahon, National Vice President, Muscular Dystrophy Association (MDA); Pat Furlong, President, Parent Project Muscular Dystrophy; Ray Merenstein, Vice President, Programs, Research!America; Charles W. Blackwell, Chickasaw Nation Ambassador to the United States; Dr. David Grimillion, Member, Board of Directors, Men's Health Network; William J. Hall, M.D., President, American College of Physicians - American Society of Internal Medicine; Debra Lundquist, Administrative Director, American Society for Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CPRS); Larry Balthazar, father of a six-year old child living with juvenile diabetes; Michael Coburn, President and CEO, Tuberous Sclerosis Alliance; Judy Cushing, Immediate Past President, National Family Partnership.

Summary

Purpose of Hearing:

This hearing provided an opportunity for patient advocates to voice their support for a variety of legislation including:

• H.R. 293 - a bill to elevate the position of Director of the Indian Health Service within the Department of Health and Human Services to Assistant Secretary for Indian Health
• H.R. 632 - Men's Health Act of 2001, a bill to amend the Public Health Service Act to establish an Office of Men's Health
• H.R. 717 - the Duchenne Muscular Dystrophy Childhood Assistance, Research and Education Amendments of 2001 (DMD Care Act)
• H.R. 943 - the Flu Vaccine Availability Act of 2001, a bill to amend the Public Health Service Act with respect to the availability of influenza vaccine through the program under Section 317 of such Act
• H.R. 1340 - the Biomedical Research Assistance Voluntary Option (BRAVO) Act, which would allow taxpayers to designate a portion of their federal income tax refunds to support NIH research efforts
• H. Con. Res. 25 - a concurrent resolution expressing the sense of Congress regarding tuberous sclerosis
• H. Con. Res. 36 - a concurrent resolution urging increased Federal funding for juvenile (Type 1) diabetes research
• H. Con. Res. 61 - a concurrent resolution expressing support for a National Reflex Sympathetic Dystrophy (RSD) Awareness Month
• H. Con. Res. 84 - a concurrent resolution expressing the goals of Red Ribbon Week in promoting drug-free communities.

Opening Statements

Chairman Bilirakis welcomed the witnesses. He highlighted legislation he sponsored, H.R. 1340.

Representative Brown emphasized his interest in H.R. 717, H. Con. Res. 36, and H.R. 1340.

Representative Upton stated his support for the H.R. 717 and noted that he was an original co-sponsor of the legislation.

Representative Pallone noted his support for H.R. 293.

Representative Barrett stated his support for H. Con. Res. 36, noting that the Children's Hospital in Wisconsin does research in this area. He also stated support for H. Con. Res. 61.

Representative Wicker, a guest of this Committee, spoke about H.R. 717, which he sponsored. The bill now has 305 co-sponsors. He noted his appreciation to the National Institutes of Health (NIH) scientists that helped to refine the language of this legislation.

Representative Eschoo expressed her support for H. Con. Res. 36 and H.R. 1340. She stated that she refers to NIH as the "National Institutes of Hope."

Chairman Tauzin noted his support for H.Con. Res. 25, H.R. 1340, H. Con. Res. 61 and H.R. 717, which he co-sponsored. He recently became aware of the disease, Friedreich's ataxia, through the experiences of one of his longtime staff members.

Representative Erlich described the impact of DMD on a friend of his family and stated his support for H.R. 717.

Representative Green stated his support for H.Con. Res 36.

Representative Greenwood stated his support for legislation he sponsored, H.R. 2118, the Lyme and Infectious Disease Information and Fairness in Treatment (LIIFT) Act. (This bill was not part of the agenda items for this hearing.)

Witnesses' Statements of Interest to NIH

Mr. McMahon spoke of his 30 year role in the fight against muscular dystrophy. He stated that the MDA was not "asking a penny for ourselves", but was seeking an annual increase of $100 million in NIH funding for muscular dystrophy research.

Ms. Furlong spoke of her role as a parent of children that had lost the fight against DMD and her current fight in support of the DMD Care Act. This legislation would establish up to three Centers of Excellence at NIH. She noted that the Senate version of this legislation, S. 805, now has 32 co-sponsors.

Mr. Merenstein spoke of Research!America's support of H.R. 1340. He stated that in a recent survey of the American public, 56 percent of those surveyed stated they would donate a portion of their tax refund to support medical research. This estimate would translate into $50 million for research if $1 was donated by each person. Based on the average size of an NIH grant, this figure would generate more than 160 new research ideas.

Mr. Blackwell spoke of his support for H.R. 293, noting the need for support at the Secretary level to address the concerns of diabetes in the Native American population.

Dr. Gremillion spoke on behalf of Men's Health Network in support of H.R. 632. He noted the disparity in funding between expenditures for cancer research at the National Cancer Institute (NCI) between breast cancer and prostate cancer in 2000. He stated this disparity resulted, in part, from a lack of advocacy and focus at the national level. He noted that improvement in the quality of women's health have been assisted by attention to women's health issues by the Office of Women's Health and the Office of Research of Women's Health.

Dr. Hall stated his support for H.R. 943, the Flu Vaccine Availability Act of 2001, to help ensure that influenza vaccine shortages do not jeopardize the health of thousands of Americans in future flu seasons.

Ms. Lundquist described the effects of RSD and the pain that is associated with the disease. She stated that NIH has given the disease a budget line, but stated that little research is being done. She commented that most of the information on RSD has come as "a backwash from research on other diseases and from the human guinea pigs that we, as RSD patients, have become." She stated her support for H. Con. Res. 61.

Mr. Balthazar described his family's experiences with juvenile diabetes. His now 6 year old son was diagnosed with juvenile diabetes when he was two. He cited the Diabetes Research Working Group (DRWG) report. He also urged the Committee to take the DRWG report recommendations seriously and to support H. Con. Res. 36.

Mr. Coburn stated his support for H. Con. Res. 25. He asked that Congress request, through the NIH Director, that cross-institute resources be utilized to develop a research plan to cure tuberous sclerosis and that increased funding be earmarked to support this research.

Ms. Cushing expressed her support for H. Con. Res. 84, a concurrent resolution supporting the goals of Red Ribbon Week in promoting drug-free communities.

Questions:

Chairman Bilirakis

Chairman Bilirakis asked the witnesses and their respective advocacy organizations to gather support for the BRAVO Act. He assured the members of the panel that the Committee would be moving on these pieces of legislation. He shared with the witnesses that "we" have made a decision not to tell NIH how to spend the money appropriated to them and that "we" feel that they know where breakthroughs will occur and will spend the money accORDingly. He did state that he has sent letters to NIH encouraging NIH to increase funding in a particular area.

Representative Brown

Representative Brown directed his question to Pat Furlong asking about successes in DMD research in the last 5 years that would tell us what we can and should do to cure this disease.

Representative Pitts

Representative Pitts noted his support for H.R. 2118. He also asked Mr. McMahon what changes he has seen in recent years in the treatment of muscular dystrophy.

Representative Greene

Representative Greene asked Mr. Balthazar about islet transplantation as a cure for juvenile diabetes. He asked Mr. Grimillion to explain why the male rate for lung cancer is double that of the female rate. He asked Mr. Blackwell how elevating the Director of Indian Health Services to the Secretary level would affect the diabetes issue.

Prepared by Jennie Kirby/OD/OLPA