The House Commerce Subcommittee on Health and Environment held a September 13 hearing to discuss a number of health-related bills. Among the bills considered by the committee were legislation (H.R. 762) to provide increased funding for lupus research, legislation (H.R. 3677) that would expand access to clinical trials approved by the Food and Drug Administration (FDA), a resolution (H. Res. 576) dealing with childhood cancers, and legislation (H.R. 1795) to establish a National Institute of Biomedical Imaging and Engineering at the National Institutes of Health (NIH).
Testifying in support of H.R. 762, the Lupus Research and Care Amendments of 1999, Tomiko Fraser of the Lupus Foundation of America detailed the impact of lupus on the 1.4 million Americans living with the disease. “Lupus is not an equal opportunity disease. Ninety percent of the victims of lupus are women.…Lupus is two to three times more likely to affect African-Americans, Hispanics, Asians, and Native-Americans than Caucasian women, ” she said, adding: “The cost to provide medical care for a person with lupus averages between six and ten thousand dollars annually. The Lupus Foundation of America estimates the economic impact of lupus on the federal treasury to be several billion dollars every year.”
H.R. 762 would authorize $75 million for lupus research at the NIH. Additionally, the bill would create a grants program through the Department of Health and Human Services (HHS) for the establishment, operation, and coordination of the delivery of essential services to individuals with lupus and their families. These services would include outpatient, ambulatory, and home-based health and support services, including transportation services, attendant care, homemaker services, and respite care. H.R. 762 would authorize an additional $75 million for the program.
Saying that lupus is a young woman’s disease, bill sponsor Rep. Carrie Meek (D-FL) urged the subcommittee to mark up the legislation: “It’s time that this is passed.”
The subcommittee also turned its attention to two bills related to children’s health, H.R. 3677 and H. Res. 576. The first, sponsored by Rep. Dan Burton (R-IN) would expand access to FDA-approved clinical trials. Under current FDA regulations, individuals may participate in FDA-approved clinical trials only if they have first tried conventional treatments and those treatments have failed. H.R. 3677 would allow individuals access to a clinical trial if they declare in writing that they are aware that there is another treatment available, that they are aware of the risk involved in receiving the investigational drug, and they choose to receive the investigational drug regardless of the risk.
James Navarro, the father of a 5-year-old boy diagnosed with a rare brain cancer, told the subcommittee, “This bill was conceived as a result of the FDA’s unwillingness to allow Thomas access to a treatment which had a higher rate of success than the treatment offered through conventional means.” After researching various treatment options, Mr. Navarro and his family opted for an experimental treatment over conventional radiation and chemotherapy, but the boy was denied access to the FDA-approved clinical trial for the experimental treatment because he had not first tried conventional treatment.
H. Res. 576, sponsored by Rep. Deborah Pryce (R-OH), would promote increased research on childhood cancers by encouraging medical personnel to enter the field of pediatric oncology, encouraging the development of drugs and biologics to treat pediatric cancers, and promoting medical curricula to improve pain management in pediatric cancer cases. Noting that September is Childhood Cancer Awareness Month, Catherine Bennett of the Cancer Research Foundation of America said, “Each year, more than 12,000 children are diagnosed with cancer and each year, some 2,300 children will die from the disease. That’s about 100 classrooms filled with children, who won’t start school next September.”
The subcommittee also heard testimony about a bill (H.R. 1795), sponsored by Reps. Richard Burr (R-NC) and Anna Eshoo (D-CA), that would establish a separate institute on biomedical imaging at the NIH. Saying that the current organizational structure of the NIH does not encourage biomedical imaging research, Dr. R. Nick Bryan of the University of Pennsylvania said, “In order to flourish and grow consistently at the NIH, a scientific field requires an organization with the mandate, the responsibility, the authority, and the resources to direct and drive investigation in that field. In the NIH structure, only institutes possess those attributes.”
Dr. Bruce Hillman of the University of Virginia School of Medicine agreed, saying, “The current means by which the NIH institutes address imaging research is as a ‘stepchild’—a part of the research portfolio of nearly all of the institutes but the principal focus of none. As a result, basic research into the development of new imaging technologies has been subject to overlap and duplication, inefficient use of resources, and lost opportunities.”
On September 14., H.R. 1795 was approved, by voice vote, by the House Commerce Committee. The committee amended the bill to change the name of the institute to the National Institute of Biomedical Imaging and Bioengineering.
