107th Congress

FY 2002 House Appropriations on Special Populations/Health Disparities -- National Institutes of Health -- House Appropriations Subcommittee on Labor, HHS, and Education -- April 4, 2001

Members Present

Representatives Ralph Regula (R-OH), Chairman; Kay Granger (R-TX); Steny Hoyer (D-MD); Jesse L. Jackson, Jr. (D-IL); Nancy Pelosi (D-CA); John E. Peterson (R-PA); and Don Sherwood (R-PA).

Witnesses

Ruth Kirschstein, Acting Director, National Institutes of Health (NIH); John Ruffin, Director, National Center on Minority Health and Health Disparities (NCMHD), Vivian Pinn, Associate Director, Office of Research on Women's Health (ORWH); Gerald Keusch, Director, Fogarty International Center (FIC); Anthony Fauci, Director, National Institute of Allergy and Infectious Diseases (NIAID); and Francis Collins, Director, National Human Genome Research Institute (NHGRI).

Opening Statements

NCMHD: Dr. Ruffin gave his opening statement first. He stated that Congress and Americans are increasingly aware of and concerned about health inequities. With the creation of the new Center, he said we are well positioned to aggressively pursue a wide range of research initiatives that will lead to a healthier life for all Americans. Dr. Ruffin stated that the key is inclusion. His vision of the future is a collective one. He is working with the U.S. Department of Health and Human Services Center on Minority Health, health care providers, educators and other stakeholders in developing a comprehensive strategic plan for the Center. He discussed some of the current areas of emphasis such as aiding in the development of targeted research, providing funding to develop centers of excellence, as well as a national loan repayment program. Dr. Ruffin emphasized that he was glad to join his colleagues on the goal of making inclusion a reality.

ORWH: Dr. Pinn stated that the ORWH was established in 1990. They are working to define the health and sex/gender differences between women and men. She provided a few examples where progress has been made in areas of heart disease and a vaccine against human papillomavirus, which could prevent cervical cancers. Dr. Pinn stated that her office is collaborating with many ICs to look at research to expand our understanding of the impact on women of diabetes, cardiovascular disease, breast and other cancers, and other health considerations, such as menopause. In addition, ORWH plans to develop multidisciplinary research centers on women's health.

FIC: Dr. Keusch stated that FIC embodies the vision that "disease knows no boundaries." All of FIC's research and training efforts are aimed at reducing health status disparities. Three aims include: 1) wanting to generate new knowledge and enhance capacity, 2) enhancing career paths for women in science in other countries, and 3) promoting a vision of health in a sustainable world. There is an effort underway to train researchers in poor nations, which benefits the U.S. as well. A study in Uganda was given as an example of data from a foreign study supporting a regimen in the U.S.

NIAID:Dr. Fauci began his opening remarks with a chart showing the NIAID Strategic Plan for Addressing Health Disparities. He stated there are a number of diseases that are relevant to health disparities. HIV/AIDS is one in which ten times as many blacks as whites are infected, and four times as many Hispanics, while only 12 percent of the population is African American. NIAID has taken strong steps to ensure minority participation in the network of clinical trials underway. There are requirements to address a plan or track record of including minorities in the programs. Another disease, asthma, carries a burden that is disproportionately high among inner city children. NIAID supports a program that focuses on asthma management. Lastly, Dr. Fauci suggested that vaccines may be our most powerful tools against health disparities-by eliminating a disease from a population, disparities in the expression of that disease are also eliminated.

NHGRI: Dr. Collins was the last to provide opening remarks. He reported on the remarkable successes of the Human Genome Project and how the human genome sequence helps address health disparities. Dr. Collins mentioned the recent publication of results from the Human Genome Project in Science magazine (copy of magazine cover shown as poster). Members were provided a copy of the article, a CD-rom on the Genome, and an education kit designed for use in high school biology classes. Dr. Collins stated that the DNA code is like a Book of Life that is really like three books in one. It is a history book, a shop manual, and a transformative textbook of medicine. He stated that this information provides new clues to help begin to answer questions such as why some populations suffer more than others. We are all 99.9 percent identical at the DNA level and most of our genetic differences are shared among all races and ethnicity's. Yet within the 0.1 percent of DNA that varies between individuals lie important clues about one's susceptibility or resistance to disease. He stated that we hold great hope that by working together our shared inheritance at the molecular level will translate into shared benefits in the application of revolutionary medical discoveries enabled by the Human Genome Project.

Questions

Mr. Regula

NHGRI: Chairman Regula asked about asthma and whether it is genetic or environmentally caused. Dr. Collins responded that it involves so many interdigitated issues including genetics. Chromosome 5 may show risk.

Chairman Regula asked what we will be able to do once we know about the genetic factors. Dr. Collins replied that by discovering the gene, you open the pathway involved in triggering the illness.

Chairman Regula asked if you have genetic information, could you formulate drugs that will be more effective? Dr. Collins replied, yes. He stated we already have examples emerging. There is a new drug for the treatment of leukemia. It blocks an abnormal protein. In a clinical trial, 31 patients went into remission, which is an unheard of number. Another drug still early in its clinical trials lowers the rate of heart disease.

Chairman Regula commented that during his visit to NIH he saw a young woman who was in remission from her cancer. He asked if genomics were involved in that. Dr. Kirschstein replied that it was immunotherapy she was given. Her ovarian cancer cells were taken and made into a vaccine that was then given to her to help fight the cancer. Chairman Regula asked if he understood correctly that a vaccine was developed from the individual's own cancer cells. Dr. Kirschstein responded affirmatively. Dr. Fauci added that one might ask why didn't her body do that in the first place. He stated that a person's natural response would never be powerful enough to respond, so the vaccine gave her the power boost to better respond. Mr. Regula then asked if he was correct in assuming that what is used for a single individual may not be used for every person. Dr. Fauci responded that immunotherapy is still in its infancy. He said to look at differences in response by different people using the same therapy will open another door along the mysterious path.

Mr. Sherwood

NHGRI: Mr. Sherwood stated that in the previous panel, they heard that diseases are caused either genetically or environmentally. He asked if this meant there are not behavioral aspects. Dr. Collins responded that excitement about genetics is palpable. For every disease we are looking at its path-how it is derived. Many diseases are a mix of genetic susceptibility and environmental factors. It is a very complicated mix. He stated that you have the hand you were dealt, but how you play the hand (behavior) is your call. We are looking forward to preventive medicine being tailored to individuals. Dr. Kirschstein added that though Dr. Olden was not present, she believed he was trying to focus on those two aspects of causation.

Mr. Sherwood commented that on a witness panel a couple of days ago, severe problems with dental carries in this country was brought up. Yet, when he visited Africa recently, a Zulu tribesman with very healthy white teeth guided the group. This led him to believe they were either genetically predisposed or diet was a factor. Dr. Collins responded that it was probably both but it proposed an interesting research question.

Mr. Jackson:

Mr. Jackson said that he would be submitting his questions for the record but that he would read them with the goal that they would be answered together.

NCMHD: Mr. Jackson asked Dr. Ruffin to report on the progress the Center has made (given new authorities) on the research endowment program, centers of excellence and utilization of grant making authority. He also asked Dr. Ruffin and Dr. Kirschstein to discuss enhancing minority programs and minority institutions and infrastructure currently supported by NCRR. He asked if it was possible to consolidate the efforts of NCRR with this Center. Dr. Ruffin replied that the Center is only ten weeks old so there are many operational things that need to be put in place first in order to "get it right." The Center is designing a blue print strategic plan involving all of the NIH ICs. They are also getting advice from all different stakeholders on how to implement the centers of excellence and research endowment program. Dr. Ruffin is also concentrating on getting personnel in place to support areas such as grants management. He said they are still receiving ideas.

Dr. Kirschstein responded to the infrastructure question. She stated that NIH is aware that infrastructure needs to be beefed up. The NCRR has a large infrastructure program. Many of the minority institutions had problems meeting the matching fund requirement. NCR has been working with several of the institutions to get waivers to that requirement. NCMHD has funds as well now and a joint effort will be encouraged.

Mr. Regula:

Mr. Regula suggested getting a poster like the one with the Nature magazine cover for the blank walls in the hearing room. He also said that they would like to visit NIH again as several new Members have not had an opportunity-perhaps in early May. Dr. Kirschstein replied that we had lots of posters from all of our ICs and that he could select from them during the visit. Mr. Regula then adjourned the meeting.

Prepared by OB