From the issue dated September 10, 1999

Debate Over Improving Minority Health Pits NIH Director Against Black Leaders Would elevating the status of an office improve research or hurt valuable ongoing efforts? By JEFFREY BRAINARD Washington In the 1960s, Harold E. Varmus joined in civil-rights marches to protest injustices affecting black Americans. ALSO SEE: A Change in Status? From an Office to a Center Colloquy: Join a debate on issues raised in this article In his six years as director of the National Institutes of Health, he has declared one of his top priorities to be alleviating a different kind of inequality: the above-average rates of diseases seen in minority groups. As a result, some minority leaders have reacted with puzzlement and dismay to Dr. Varmus's opposition to a Congressional proposal that its supporters say would help the N.I.H. study and narrow the disparities in disease rates. Dr. Varmus has a deft touch for persuading Congress and the Clinton Administration to support increased research spending, and supporters of the legislation see him as a foe they need badly to convert to an ally. A bill proposed in June by Rep. Jesse L. Jackson, Jr., a Democrat from Illinois, and co-sponsored by 70 other Representatives, would elevate the status of the N.I.H.'s Office of Research on Minority Health. It would be renamed the National Center for Research on Domestic Health Disparities, and given responsibility for studying health disparities affecting U.S. minority groups and low-income people of all races. Supporters of the bill say elevating the office would give it broader powers to start and coordinate such research among the N.I.H.'s 25 institutes and centers, and would give the research more visibility and momentum. Within the N.I.H.'s existing structure, progress on eliminating racial disparities in health has been too slow, the supporters say. Dr. Varmus agrees that the N.I.H. needs to do more about the disease disparities, said Marc Smolonsky, the agency's associate director for legislative policy and analysis. However, he said, the director believes that the existing structure is best suited to accomplish progress. Dr. Varmus has argued that the proposed center would confine research on minority health within one realm of the agency. The various institutes have the necessary expertise on the diseases that disproportionately affect minority groups, and thus are best able to judge which research projects would best investigate those disparities, Mr. Smolonsky said. This is more than a debate about the N.I.H.'s structure and the direction of minority-health research, however. Some of Dr. Varmus's statements about Mr. Jackson's proposal have sparked strong feelings. During an unusual meeting in June, in which the director called together about 15 black and Hispanic staff members, he reportedly vowed to "lay my body across the tracks" to block the proposal, according to one of those who was present. Dr. Varmus did not respond to several requests for an interview. Mr. Smolonsky, however, said the director does not feel that way about the bill, even in its present form, although he does hope to work with Mr. Jackson to modify it. Nevertheless, that comment along with others that Dr. Varmus has made have bothered some advocates of elevating the minority-health office, who have heard about them. "What that conjures up in my mind is the picture of [the late Alabama] Governor [George] Wallace standing in the door of the schoolhouse saying, 'No blacks are going to be coming here,'" said Vincent A. Thomas, Jr., an N.I.H. administrator who is president of the agency's chapter of Blacks in Government. African-American leaders are among the most passionate supporters of the bill, which has been endorsed by the National Medical Association, representing 22,000 black physicians. Surgeon General David Satcher, who is black, supports the concept, although he says other federal agencies, too, need to do more. Decisions about N.I.H. spending priorities are very often controversial. Dr. Varmus has generally tried to keep money focused on basic research, while many groups seek to secure financing for studies focused on specific diseases or populations. But the controversy over minority-health research has the added weight of the history of racial discrimination in the United States. With the minority proportion of the U.S. population growing, "this is not an issue that is going to go away," said Sherman A. James, director of the Center for Research on Ethnicity, Culture, and Health at the University of Michigan. The gap in disease rates has been documented for years, and has persisted. Black infants die at a rate more than twice that of white infants. Black people live about six fewer years, on average, than white people do. American Indians are 10 times more likely than whites to develop diabetes. To eradicate such disparities, the N.I.H. created the Office of Research on Minority Health in 1990, before Dr. Varmus arrived. President Clinton continued that focus in 1998 when he announced the goal of eliminating the disparities by 2010. This year, the budget of the N.I.H. minority-health office is $75-million, and it has eight full-time employees. According to Mr. Smolonsky, the N.I.H. is spending a total of $1.3-billion this year for research on health disparities of all kinds, of which $800-million is for projects focusing on disparities between minority groups and the general population. The N.I.H.'s total budget this year is $15.6-billion. The minority-research office and N.I.H. institutes have financed research on several diseases that reflect disparities, and have supported training for minority scientists who study issues in racial disparities. Although Mr. Jackson praised Dr. Varmus's leadership and expertise, the Congressman called the results of those efforts insufficient. He cited a January report by the Institute of Medicine -- part of the National Academy of Sciences -- which concluded the N.I.H. ought to spend more to understand the scope and causes of the disproportionate impact of cancer. The report also said the agency had overestimated the amount that it spends on such cancer research (The Chronicle, March 5). "Without statutory authority to say this is a priority, the directors of the various institutes don't have to take it seriously," Mr. Jackson said. "The buck has to stop somewhere, and making this office a center at N.I.H. is the best way to accomplish that." To spur research on minority-health disparities, Mr. Jackson's bill would give the proposed center authority to issue grants on its own -- a key power that the Office of Research on Minority Health now lacks. The bill also would authorize an increase in the office's budget, to $100-million. Mr. Jackson has an ally in Louis W. Sullivan, who was Secretary of Health and Human Services under President Bush. Dr. Sullivan, who is black, is president of Morehouse School of Medicine, and met with Dr. Varmus to argue for the bill. "If research on minority health is a real priority, and we don't have a lot of empty rhetoric, we should see much more in terms of increased dollars spent on it," Dr. Sullivan said. "When you have an N.I.H. budget that has increased 50 per cent since 1993, it gives you a golden opportunity. We have tried for years to get the N.I.H. to focus attention on these issues. The only way that we're going to accomplish this is by having structural changes at N.I.H." Under the agency's existing structure, the minority-health office must enlist institutes to co-sponsor all of its research proposals. The cost of those projects is borne by the office or institute from its respective budget, or is shared. Mr. Jackson and Dr. Sullivan said the office has experienced difficulties in persuading institutes to co-sponsor proposed research projects. In addition, the legislation is intended to include the center's director in the N.I.H.'s highest-level councils. Dr. Varmus meets weekly with directors of centers and institutes to discuss N.I.H. priorities and policies. Mr. Jackson argues that it is vital for the minority-health office to have a seat at the table. But John Ruffin, director of the office since its inception, has not been invited to the meetings for several years. He did not respond to requests for comment. Mr. Smolonsky, of the N.I.H.'s legislative-affairs office, said he and Dr. Varmus favor a different kind of change within the agency's existing structure: a requirement that all of the institutes and centers prepare specific budgets and plans for research on disparities in disease rates. In brief comments at a June forum of the American Association for the Advancement of Science, Dr. Varmus said: "I think the minority populations that need to benefit from the revolutions going on in science will be poorly served by this research being put in one institute [sic] that can't possibly benefit from all of the initiatives going on across N.I.H." N.I.H. officials also argue that the disparities in diseases may be attributable largely to the limits on access to medical care faced by members of minorities and other groups. But studies have suggested that racial disparities in health persist among black and white people of similar income levels; researchers have not reached a consensus about how to explain them. Some diseases predominate in certain populations -- for example, sickle-cell anemia disproportionately afflicts black people. However, diseases such as cancer, AIDS, and diabetes do not strike only one race, and thus research to develop treatments will benefit patients of all races, Mr. Smolonsky said. "It's better to leave the research engine for those diseases in the institutes and centers" that study them, he said. "It would be impossible to put all that expertise in one place." Grant-making, he added, requires expertise in a disease. However, Dr. Sullivan argues that Congress has created institutes at the N.I.H. to deal with diseases and topics without weakening research by existing institutes in those areas. For example, he noted, not all N.I.H. research grants on childhood diabetes and genetically linked disorders are financed by the National Institute of Child Health and Human Development. "What each of these institutes does is provide focus and leadership," he said. Those who have been troubled by Dr. Varmus's opposition to the proposed minority-health center have not called him a racist. Mr. Thomas, president of the N.I.H. chapter of Blacks in Government, did say it was inappropriate that the director had gone to Capitol Hill accompanied by African-American staff members of the N.I.H. to lobby members of Congress against Mr. Jackson's proposal. He declined to specify the size of his chapter, but said it exceeded 100 members, who had endorsed the minority-health center. Mr. Thomas and others were taken aback by other comments Dr. Varmus reportedly made during the June meeting with African-American employees. After he stated his opposition to Mr. Jackson's bill, Dr. Varmus asked for his subordinates' opinions, according to one administrator who was present and who asked not to be identified. "It was my sense that he [said] it in such a way as to intimidate us from telling people on the outside about what we thought" of the proposal, the administrator said. In addition, Dr. Varmus warned that if Mr. Jackson's proposal were successful, the director could not guarantee that the N.I.H. would preserve existing positions in the institutes that deal with minority-health research, the administrator said. Mr. Thomas, who did not attend the meeting, argued that those personnel would still be needed to coordinate research with the minority-health center. He said Dr. Varmus's suggestion implied to him "that if the bill passed, he's trying to sabotage it." Mr. Smolonsky said the reverse was true: "I am not aware of any plans to reduce [staffing] in any areas. Dr. Varmus is planning to build and enhance the institutes' resources, whether there's legislation or not." Many of those interested in promoting minority-health research said creating a new center at the N.I.H. will not be sufficient to end the health disparities, but was an important step. Dr. Satcher, the Surgeon General, said he supports the concept of a center, although he added that he was not specifically commenting on Representative Jackson's bill. "We have never before made a commitment to eliminate the disparities," he said. "We need to do things differently if we're going to achieve the goal." However, Dr. Satcher said, two other federal agencies -- the Centers for Disease Control and Prevention, and the Agency for Health Care Policy and Research -- also need to increase research related to health disparities. The C.D.C.'s research encompasses studies of the health habits of minority groups, and the health-care-policy agency monitors the accessibility of health care to minority groups. One question needing further study, Dr. Satcher said, is to what extent minority groups lack care because they distrust the predominantly white health-care system. The federal government has not coordinated those kinds of research well, said Stephen B. Thomas, director of the Institute for Minority Health Research at Emory University. Leadership is needed, and the proposed center could help, he said. "We're living in a time when messages are important, and this [proposal] would send the right message," Mr. Thomas said. "African Americans and other minority groups have far too many feelings that they are not part of the broader community." Dr. Varmus may see coordination of this research as outside the N.I.H.'s mission of supporting basic research, said the N.I.H. administrator who asked not to be named. A Nobel Prize-winning microbiologist, Dr. Varmus has regularly been criticized while at the N.I.H. as favoring molecular-biology research over clinical studies. "He is a good-hearted guy who wants to do right," the administrator said. "I don't think he sees this as a scientific center, but as a political thing." When Congress returns to work this week, Mr. Jackson's bill will compete for attention with an expected battle over next year's federal budget. As yet, his measure has no sponsor in the Senate. In the House, all but one of the 71 co-sponsors of the bill are Democrats. Dr. Varmus's office has held discussions with Mr. Jackson's office about the bill. This month, members of the minority-health office's advisory committee hope to meet with the director during the panel's biannual meeting.. Some members of that panel support the bill. But one of them, David R. Burgess, academic vice-president of Boston College, voiced concern that the N.I.H.'s institutes might cut research on minority health and divert financing to other projects if the center were created. "Dr. Varmus has a valid position," said Mr. Burgess, a cell biologist and president of the Society for the Advancement of Chicanos and Native Americans in Science. "This is not a clear call." http://chronicle.com Section: Government & Politics Page: A41 Easy-to-print version E-mail this article