Francis S. Collins, M.D., Ph.D.

National Institutes of Health Director Francis S. Collins, M.D., Ph.D., reported that the NIH has "fallen way short" in its goals to achieve diversity in the research work force. He expressed his disappointment with this current status quo during his presentation, "Health Disparities Research and the Need for Diversity in the U.S. Biomedical Workforce," at the July 27 NMA House of Delegates session.

"There is a desperate need for more diversity in science and medicine in the U.S.," Dr. Collins said. "We are not capturing the best minds from all groups, regardless of race or ethnicity. This is simply unacceptable."

Dr. Collins vowed to make increased diversity of the NIH work force a high priority. The 2008 U.S. Census Bureau Reports on Race and Ethnicity show that African-Americans represent 11.5 percent of the population, yet 2009 NIH funding reports reveal that African-Americans represent only 1.3 percent of funded researchers. Furthermore, African-Americans, Hispanics and Native Americans represent 31 percent of the U.S. college-age population, but only account for 14 percent of life sciences undergraduates.

"We are going to undertake a thorough analysis of our training programs to understand which approaches have worked and which, despite good intentions, have failed," he said. "Research tells us that we are losing African-Americans in the grant application process, and we need to understand the factors that play into that and manage interventions that will improve outcomes."

The NIH director also addressed how enactment of the Patient Protection and Affordable Care Act (ACA) has affected diversity initiatives. Specifically, the National Center on Minority Health and Health Disparities became the National Institute on Minority Health and Health Disparities (NIMHD) charged with promoting minority health and leading the NIH effort to reduce and ultimately eliminate disparities, Dr. Collins said.

Plans are also underway to move the NIH's Research Centers in Minority Institutions (RCMI) Program to NIMHD in October. This move would improve research capacity and infrastructure at minority colleges and universities that offer doctorates in health sciences. Additionally, bringing RCMI under the NIMHD umbrella would bring more minority scientists into research, enhance studies of minority health, and support clinical and translational research through special infrastructure and research network grants.

Dr. Collins also discussed the HHS Health Disparities Action Plan released in April, and the NIH Health Disparities Strategic Plan and Budget released in July. Most notable among the goals for the HHS plan is the one calling for advancing scientific knowledge and innovation.

The NIH's own Disparities Strategic Plan outlines projects to address minority health and health disparities within each NIH institute and center, and sets three major goals for each of those institutes and centers, he said. These goals include supporting research on factors underlying health disparities, engaging in community outreach and public health education, and expanding research capacity to create a culturally sensitive workforce.

As an example of research on health disparities factors, Dr. Collins said recent research has revealed a connection between sleeping disease and kidney disease. African-Americans are four to five times more likely to suffer from focal glomerulosclerosis than those of European ancestry. Gene variants (G1 and G2) in the APOL1 gene are common in African-Americans and protect against the parasitic human African trypanosomiasis-caused sleeping sickness, but these gene variants conversely increase the likelihood of kidney disease and failure.

In terms health disparity factors, NIH research has supported studies on preterm births. In 2009, 13.9 percent of black infants had low birth weight compared to 7.2 percent of white infants. The NIH Maternal Fetal Medicine Units Network has supported research in 14 clinical centers, and to date, significant findings show that weekly progesterone injections for women with previous preterm delivery reduces risk of preterm birth and that magnesium sulfate administered before preterm birth provides neuroprotection to the newborn.

As for expanding public health education, Dr. Collins drew attention to the NIH Community Outreach, Information Dissemination and Public Health initiative, which calls for all NIH institutes to provide the latest research-based information to health care providers to enhance care of health disparity populations, facilitate the incorporation of science-based information into educational curricula for health professionals, and foster dialogue between providers and minority populations.

The NIH director also addressed minorities and clinical trials. Participation has ranged from 35 percent to 40 percent of African-American, Hispanic and Asian populations in Phase III clinical studies from 1995 to 2010.

"It's generally a trend upward, but we don't believe that has been enough," Dr. Collins said.

To encourage minority participation in clinical trials, the NIH has charged the RCMI Translational Research Network with providing additional opportunities for multi-site clinical and translational research among minority and collaborating institutions, he said. Additionally, the National Cancer Institute's Minority-Based Community Clinical Oncology Program is providing physicians serving large minority populations with easy access to NCI-sponsored clinical trials and is enabling community physicians at 16 sites to join together to enroll patients in NCI-sponsored trials.

Another impressive NIH effort is the Clinical and Translational Science Awards (CTSAs), which encompasses 60 research centers nationwide engaging in community outreach to minorities. The NIH has also forged clinical partnerships with the four Historically Black Colleges and Universities (HBCUs) to initiate activities from developing clinical research degrees to conducting treatment trials among minority patients.

In speaking about the NIH budget, Dr. Collins said the budget for FY 2011 is $30.924 billion compared to $31.238 billion in FY 2010.

"The budget for only the second time in 40 years showed an actual drop in absolute dollars, reflecting the difficult budgetary circumstance," he said. "We are just as alarmed by the current events that will affect the future of our nation's financial state. Medical research has been strongly advocated by President Obama as a major priority."