Where To, Now?|
ORMH Marks 10th Year with Conference, Tough Questions
By Carla Garnett
Photos by Ernie Branson
On the Front Page...
Flashback to 1990. It was a busy year in medical science, and at NIH in particular. In between permanent directors that year with the threat of a federal furlough looming, NIH was stormed that spring by public demonstrations first animal rights activists, then AIDS activists marched on campus. New therapies for stroke and spinal cord injury were announced, new approaches to treating epilepsy and colon cancer were trumpeted, and the first-ever human gene therapy trial was launched. An effort to reduce the nation's blood cholesterol levels was begun, and HIV was beginning to spread disproportionately among women and in the minority community.
But HIV/AIDS wasn't the only disease in which minorities were suffering in greater numbers than whites. According to a DHHS Office of Minority Health publication Closing the Gap, a distinct difference in health status was emerging on several fronts. In response, then-DHHS secretary Dr. Louis Sullivan appointed Dr. John Ruffin as NIH associate director for minority programs, effectively establishing what is now NIH's Office of Research on Minority Health.
"The shocking disparity between white and black health must be addressed," Sullivan said, referring to the 14th annual study on the health status of the nation, which had been released only months earlier. "Closing the gap will not be easy, but this department and this administration are committed to improving this situation."
Fast forward to 2000. Déjà vu. NIH is in between permanent directors. Overall thanks largely to advances in research the nation has never known better health and longevity, but the wealth of health still isn't reaching the country's minorities. Again the DHHS Secretary has responded, this time with a comprehensive and ambitious plan to eliminate health gaps in six major areas by 2010.
To map out a strategy for its next decade and to acknowledge the successes of its first, ORMH hosted a 3-day conference in April titled, "Challenges in Health Disparity in the New Millennium: A Call to Action." More than 1,000 participants including members of ORMH's advisory committee, minority medical schools and institutions, the medical research community and health advocacy groups across the country gathered for what amounted to 3 days of in-depth soul-searching. As he did when he was appointed in 1990, Ruffin sparked discussion by asking tough questions.
"How can the Office of Research on Minority Health best facilitate the national research effort to identify risk factors, prevention strategies and treatments for minority populations?" he said, during his welcome address. "How can we strengthen partnerships between NIH and minority communities to promote health and prevent disease? How can we strengthen participation of minorities in clinical trials and population-based strategies? How can we improve instructional and enrichment activities in science for minority students and teachers? What are the most effective strategies for recruiting and retaining minority biomedical scientists? I think the charge is clear. The question today is, where do we go from here? Once again we are seeking the advice of the community. The collective brain power of the minority community has always been on target."
What Are Health Disparities?
By the year 2050, most Americans will be people of color. If trends in health continue as they are, however, the majority of citizens will be sicker and die sooner than their white counterparts. The benefits of better health are not reaching all Americans.
Consider current statistics for any major disease area: African Americans are about 34 percent more likely to die of cancer than are whites. Hispanics have higher rates of cervical, esophageal, gallbladder and stomach cancers than the national average; stomach and liver cancer rates are higher in Asian Americans than the national average. The relative number of persons with diabetes in African American, Hispanic, and American Indian communities is one to five times greater than in white communities; the Pima Tribe of Arizona has the highest known prevalence of diabetes of any population in the world. Diabetes-associated kidney failure is two and a half times greater in Hispanic people with diabetes than in their white counterparts. In 1998, black and Hispanic women with AIDS accounted for 77 percent of the cumulative cases reported.
"Overcoming such persistent health disparities and promoting health for all Americans particularly those who have suffered most ranks as one of NIH's foremost scientific challenges," declared NIH acting director Dr. Ruth Kirschstein, who gave the conference's keynote address on day one. "We have entered the 21st century with such scientific and technological munificence that we should and must be able to promise good health and long life to all our citizens."
Signaling that a commitment to better health for all has been made at the top of the federal government, DHHS Secretary Donna Shalala addressed the conference during its opening day.
"For a decade the Office of Research on Minority Health has kept its promise by working with its partners at NIH to ensure that we do not remain two nations separate and unequal in overall health," said Shalala, who recalled her close connection to ORMH's earliest years. She served as a member of the NIH director's advisory board when ORMH was created and was also a member of the original fact-finding team for the office's first research agenda.
"We need each one of you and your organizations to ensure that minority health concerns are never overlooked," she continued. "We need you to continue researching ways to unlock the mysteries that surround racial and ethnic disparities. We need you to continue to give us input and ideas, but more than anything else we need you to keep our feet to the fire. We need you to remind everyone that when it comes to improving our health, this country can never move ahead if anyone is left behind."
What Is NIH Doing Now?
Kirschstein identified three broad areas where NIH is concentrating its attack on health gaps: recruitment of more minorities into clinical trials, increasing professional and scientific training, and improving outreach to underserved populations. Active recruitment efforts have resulted in more minorities than ever before participating in NIH-supported clinical trials, she reported.
"We expect the number to grow as information about these trials becomes more accessible to many more people through our new clinical trials database," she said.
In addition, she noted that advancing the expertise of faculty and attracting more underrepresented minority students to the sciences and to careers in biomedical research is essential.
"But success in this area has been painfully slow, a fact we must sadly acknowledge," Kirschstein said, adding that signs of some progress are evident: Funding and authority for a debt-forgiveness program a long-sought recruitment incentive for minorities are on the horizon.
She also mentioned a success story that combines all three strategies: The Jackson Heart Study, a collaborative clinical trial in Mississippi supported by ORMH and the National Heart, Lung, and Blood Institute, will examine environmental and genetic risk factors in the disproportionate incidence of heart disease in the black community. The largest trial of its kind ever conducted among African Americans, the Jackson study not only gathers minority participants in a clinical study, but also includes minority scientists in key leadership roles on the research team and provides training in epidemiology for undergraduate and high school students.
"Our aim at NIH is to promote the development and transfer of our research-based information in the biomedical, behavioral and social sciences for use by professionals, communities and all others working toward eliminating health disparities," said Kirschstein.
The Community Responds
Throughout the 3 days, the conference would hear from dozens of experts inside and outside the federal government on ways ORMH and NIH can meet the challenges of narrowing health gaps. Notably, former surgeon general and former NICHD deputy director Dr. Antonia Novello, now commissioner of New York State's department of health, acknowledged the unfair disease burden borne by the nation's underserved populations and offered her perspective on improving health for minorities.
One topic of debate throughout the conference was whether ORMH should be given grantmaking authority. Currently the office cannot award its own grants, but must collaborate with other NIH ICs to sponsor research projects.
Several powerful speakers, including Dr. Reed Tuckson of the American Medical Association, endorsed a promotion of ORMH to center status. Indeed, several bills are pending in Congress including one offered by Rep. Jesse Jackson, Jr., (D-Ill.) to establish a National Center for Research on Health Disparities that if passed could provide grantmaking authority.
In the meantime, Kirschstein has proposed creating a Coordinating Center for Research on Health Disparities that can boost ORMH's status administratively without congressional action. In addition, NIH's acting director also reconstituted the NIH-wide committee that will devise the agency's overall strategy to combat the health gaps: All NIH institute and center directors immediately became members of the committee.
On day three of the conference, the committee's cochairs Dr. Anthony Fauci, NIAID director, and Dr. Yvonne Maddox, NIH acting deputy director, described their goals and gave a timetable. Each institute and center submitted an individual plan to the cochairs on Apr. 3; by late May, a total NIH plan was crafted. Ruffin and his advisory committee then reviewed the plan. Kirschstein received the strategy at the end of May and by mid-June when NIH holds its annual budget retreat the plan will be solidified and incorporated into fiscal year 2002 budget documents.
Also on the conference's agenda were state of the science reports on several major health areas, panel discussions, a scientific poster session by more than 35 minority students in medical science and a town hall meeting that opened the forum to all participants.
"This is a landmark event for the National Institutes of Health," concluded Kirschstein. "This conference marks not only the 10th anniversary of the office, but also an important threshold in efforts by the NIH and our partners to expand research opportunities for minority scientists and to reduce or eliminate disparities in health status among racial and ethnic minority groups through research."
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