On July 26, the Senate Health, Education, Labor, and Pensions Subcommittee on Public Health held a hearing on health disparities among minorities, women, and underserved populations. Opening the hearing, Subcommittee Chair Bill Frist (R-TN) said, “The recent mapping of the human genome has shown that, in genetic terms, all human beings, regardless of race or gender, are more than 99.9 percent the same. However, despite this fact, serious and tragic disparities in health outcomes exist that are specific to race and gender.” The hearing focused on the Health Care Fairness Act (S. 1880), sponsored by Sen. Edward Kennedy (D-MA). Companion legislation (H.R. 3250) was approved by the House Commerce Committee the same day.
S. 1880/H.R. 3250 would:
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Witnesses were unanimous in their support for S. 1880: “If we are to see any improvement at NIH in the area of health status disparities, the director of ORMH must participate in helping set the agency’s overall minority health research agenda….These changes will provide the new National Center with the authority and the resources it needs to make real progress toward eliminating our nation’s disturbing health status gap,” stated Dr. Louis W. Sullivan of the Morehouse School of Medicine.
Dr. Ruth Kirschstein of NIH discussed efforts to improve health disparities, saying, “The elimination of health disparities will require a cross-cutting effort, involving not only various components of the Federal Government, but the private sector as well.” Expressing support for the creation of a National Center for Research on Minority Health and Health Disparities, Dr. Kirschstein said, “While we envision authority for the Center to award grants to fill-in research gaps and build capacity at research institutions, its major role would be to coordinate the efforts of all Institutes and Centers at the NIH.”
Addressing NIH’s efforts to include women in research, Dr. Kirschstein criticized a recent General Accounting Office (GAO) report, which found that while women were being included in NIH clinical trials, researchers were failing to analyze the data to reflect gender differences. “Unfortunately, GAO reviewed unpublished reports based on research that occurred before the new requirements were enacted…Meanwhile, data from 1998, the most recent available, show that nearly 67 percent of all participants in NIH-supported research were women,” she stated, adding: “We are confident that women are being included in clinical trials in large and increasing numbers. We are currently enhancing a new NIH-wide system for tracking clinical trial data to ensure that women are accurately counted.”
Detailing the GAO report, Phyllis Greenberger of the Society for Women’s Health Research concurred with several of the GAO’s recommendations. “Indeed, it took the GAO audit to determine that nearly 1/3 of the studies examined enrolled less than 50% women,” she said, adding: “Among the six institutes the GAO examined in its 2000 report, the percentage of NIH studies tracked ranged from 13% at the National Institute of Allergy and Infectious Disease to 60% at the National Institute for Child Health and Human Development.” She recommended that each institute be given the same requirements for tracking enrollment data.
Additionally, according to Ms. Greenberger, “The Society recommends that individual studies be tracked not only for the number and proportion of male and female subjects, but also for whether sex analysis is completed at the time funding ends. This method of tracking would be far more useful to understanding whether the inclusion policy is being carried out….The inclusion of women in clinical research is not the final goal—it is a means to the performance of analysis by sex. Without such analysis, our knowledge of biology remains incomplete.”
House Action
Also on July 26, the House Commerce Committee approved, by voice vote, the House companion bill (H.R. 3250), sponsored by Rep. Bennie Thompson (D-MI). The committee approved three amendments by voice vote.
Rep. Brian Bilbray (R-CA) offered a substitute amendment that would change all bill references from “minority populations” to “health disparity populations, including minority populations.” The other amendment, offered by Rep. Diana DeGette (D-CO), would expand the data collection systems to include age and gender. The bill would have collected data only on race and ethnicity. The third amendment, offered by Rep. Eliot Engel (D-NY), would add environmental factors to the list of research items.
During the Senate hearing, Sen. Frist expressed his support for moving the Senate bill after the August recess.
