Responding to criticism from patient advocates and researchers, NCI has established a center for studying disparities in the cancer burden experienced by some populations.
According to a draft of the NCI Bypass Budget for fiscal 2002, the Institute would like to spend $2 million for operations and $42.6 million for research projects administered through the new Center to Reduce Cancer Health Disparities.
By calling the new entity a “center,” NCI signaled that it is giving the health disparities effort a higher profile than it has in the past.
The center replaces the Office of Special Populations Research, which was created four years ago to coordinate research in health disparities. OSPR didn’t have the funding or institutional support it needed to be effective, say critics of the Institute’s approach to the problem of health disparities.
The center’s origins were, to say the least, unusual. On March 3, at a meeting of the Special Populations Working Group which advises OSPR, several members leveled sharp criticism at the Institute for what they described as a lack of commitment to studying the problem.
The argument began when the working group learned that OSPR Director Otis Brawley had not been invited to a meeting where NCI officials discussed the role of health disparities research in the Bypass Budget. Later that night, Klausner called Harold Freeman, a member of the working group and chairman of the President’s Cancer Panel. Responding to criticism, Klausner challenged Freeman to come to work at NCI and establish the center.
Freeman’s appointment as director of the center was made official earlier this week, a few hours after he discussed his plans for the center with the National Cancer Advisory Board.
Freeman will work part-time at NCI while keeping his other appointments. In addition to his position on the Cancer Panel, Freeman is an NCI-funded investigator, CEO of North General Hospital in Harlem, a consultant in surgery to the Breast Service at Memorial Sloan-Kettering Cancer Center, and a member of the Board of Directors of the American Cancer Society.
As a “special governmental employee,” Freeman will be allowed to work up to 130 days in any 365-day period, according to NIH ethics rules.
“I thank Richard Klausner for making the decision to develop the Center for Reducing Cancer Health Disparities, and for having the confidence that I could lead it,” Freeman said to the NCAB at its Sept. 12 meeting. “This is daunting task, but one that I believe is doable.
“This is not a new activity at NCI, but perhaps it is an opportunity to synergize a lot of things that are going on,” Freeman said. “We do not believe the center should reinvent any wheels that have already been invented. We believe that it should look at the wheels that have been invented and make sure they are on the same vehicle.”
Freeman’s presentation contained few organizational details and no discussion of funding.
Klausner: Confidence In Freeman
NCI will begin a search for a deputy director of the center and an assistant deputy director for interagency partnerships, Freeman said. The center will initially contain three branches: Special Populations Research, Communications, and Health Policy.
Freeman did not address—nor did any NCAB member ask—how he planned to handle potential conflicts or the appearances of conflicts that may arise from his various positions.
While Freeman’s potentially conflicting responsibilities worry some NCI and NIH officials, patient advocates, and minority researchers, few were willing to openly discuss their concerns.
“The biggest concern being discussed by many people is whether NCI’s commitment is really there,” said Lucile Adams-Campbell, director of the Howard University Cancer Center and a member of the NCI Special Populations Working Group. “The NCI plan for the center is fine, but I think it will be difficult to implement even with a full-time director. To find out that it’s only a part-time position, I think sends a bad message. The position needs to be 100 percent without any strings attached.”
“The intent to establish a center on cancer health disparities is very timely and extremely important,” said Sandra Million-Underwood, professor of nursing at University of Wisconsin-Milwaukee School of Nursing and chairman of the Special Populations Working Group. “It’s essential that NCI make a strong statement and provide the necessary staff and financial support that will allow the achievement of the goals, because without it, we will fall short. Both within and outside of NCI, we must have the leadership and support to do the jobs that need to be done.”
In an interview this week, Klausner said he was confident that Freeman would be able to direct the center on a part-time basis.
“It is very clear that this center requires leadership at multiple levels, and most of the center leadership will be full time and that will fall to other people,” Klausner said to The Cancer Letter. “I’ve found that part-time individuals—such as Al Knudson and Ed Harlow—have been unbelievably valuable, and the worry about whether an individual can be part-time isn’t a concern. It is not a statement about the value and importance of the center.”
Klausner brought in Knudson, from Fox Chase Cancer Center, and Harlow, from MIT, to reorganize NCI’s genetics and basic science programs soon after his appointment as NCI director in 1995.
“I don’t rule out there being other part-time people in the center,” Klausner said. “We want people to come in and out of NCI to participate in our programs. We want to create a think tank for some of the issues surrounding the center, where people can come, to write, review literature, and serve as visiting scholars.”
Klausner said conflicts that may arise from Freeman’s position on the Cancer Panel and his NCI employment would be manageable.
“Most of what goes on in any aspect of NCI is public information and it will be helpful for him to speak about what the center is doing, and to hear what ought to be done,” he said. “He will also be involved in the generation of ideas for funding, and those cannot be publicly discussed.
“We reviewed all of his activities to make sure that we and the Office of General Counsel and the ethics offices are comfortable with managing any conflicts that many arise,” Klausner said. “We and the general counsel also are comfortable with his maintaining his position on the ACS board. We encourage NCI employees to be involved in whatever community they are involved in, but these have to be reviewed up front to address conflicts of interest.”
How Freeman Got The Job
A 1999 report by the Institute of Medicine, “The Unequal Burden of Cancer,” made 27 specific recommendations to NCI to enhance research and reporting on cancer health disparities (The Cancer Letter, Jan. 22, 1999). NCI accepted most of the recommendations, although the Institute disagreed with the report’s accounting methods for tracking research in special populations.
However, more than a year later, members of NCI’s Special Populations Working Group expressed their frustration that the Institute had not moved quickly enough to increase funding for the Office of Special Populations Research, enhance the role of the office and its director, Otis Brawley, and increase funding for the Special Populations Research Networks, a grant program.
Members of the working group expressed their frustration at a meeting March 3. Working group members said they were particularly upset that Brawley was not invited to a meeting where top NCI officials decided that the FY2002 Bypass Budget would contain a special section on reducing cancer disparities among special populations. The working group learned about the Bypass Budget meeting from Susan Sieber, NCI’s director of communications.
Freeman said NCI would have to show greater commitment to the office, and raised the threat posed by a bill introduced by Rep. Jesse Jackson Jr. to establish an institute for health disparities at NIH.
“Unless you empower this man—I am not speaking of Otis, not personally—you have to empower that office to convince a group like this, or else the Jesse Jackson thing is going to have to go the other way,” Freeman said, according to an official transcript of the March 3 meeting.
Klausner had decided that special populations projects should not be moved from the NCI divisions to the OSPR, Sieber said. “Rick’s philosophy has been, as I think you have heard, that rather than pull out these projects and have them supported as an entity, sort of in isolation from the rest of the Institute’s activities, he felt that these activities should be integrated into the fabric of the Institute and into the scientific expertise of the operating divisions,” she said.
FREEMAN: Do you need an Office of Special Populations [Research]?
SIEBER: Yes.
FREEMAN: Why do you need it?
SIEBER: In order to coordinate activities, to make sure than in each division activities are well coordinated.
FREEMAN: That is a good point. Does [Brawley’s] office coordinate those activities?
SIEBER: Yes, he is responsible for knowing what is going on across the divisions.
FREEMAN: He may know what is going on, but does he coordinate it?
BRAWLEY: What is your definition of coordinate?
FREEMAN: I know that Otis knows what is going on. Otis is not coordinating that activity. He is not. He knows about it…. Does Otis really coordinate the activities that you were talking about? I don’t see that happening.
SIEBER: Can you provide us with input as to how we can develop that coordination?
FREEMAN: I would love to do that. And I will come to Bethesda to help you with that. I would love to do that.
SIEBER: But that is what we want.
JUDY KAYE (assistant professor of nursing, Medical College of Georgia): I would agree with Dr. Freeman that you have to empower it and structure it and provide money. If it is too dissipated and washed out into other programs, then you lose any real meaning of the special populations really being looked at and studied and followed through in cancer control.
FREEMAN: I think a committee like this is very sincere. These people, as you know, around this table, are not just whistling Dixie on this issue. If there were a genuine movement in this area, we would clearly support it. I am not sure there is…. I think Rick is a very passionate man when he makes up his mind to do something, as you know, and we are trying to reawaken this giant on this issue a little more. He has the passion, but we have to reawaken him a little bit more, to coordinate these very critical issues for the entire American public, not just for black people or Hispanics. This is a human set of issues. It may be the most important set of issues the NCI could deal with…. It would still need some coordination, not just the decision of the director of a part of the agency to do one part, but someone who would have some oversight power to help direct it. Not power over it, but somebody to pull it together. Not Otis sitting where he sits with $6 million and you call him the special populations person. That is not enough. To convince us will only take an honest effort. Otherwise this may go a different direction, as you know.
SIEBER: As I said, we would truly welcome your advice on how best we can proceed. What I am hearing is, we need to establish a way the Office of Special Populations Research has a greater sphere of influence over NCI’s—
FREEMAN: You may need a broader approach because one person probably cannot do this….
NGINA LYTHCOTT (National Black Women’s Health Project): …. I am willing to buy your thing that we don’t want separate, we want it integrated and woven within, but who is making sure that is happening, that the right questions are being asked? Who is making sure that when the research is being funded that it is being disseminated to the primary care docs and the oncologists? You have to have somebody at the table very high up that has the status and the money to make sure that is happening…. We need a coordinator with a capital “C” so that when people look at him and see him, they think he has Rick’s ear. He sits on these committees. He can say to a grant PI, if you will ask these questions, we will put in an additional $2 million into your research funding, or something like that…. It blows my mind to think that we are to be happy with the crumb of $6 million, although it is so much more than it was, and I am eternally grateful for that. But $6 million is a crumb out of [the NCI budget of] $3 billion.
SIEBER: It is a start. This is an attempt to establish something to build upon, to create something that really does not exist. We have to start somewhere.
LYTHCOTT: I agree and all I want to say is that NIH and NCI can continue to expect to get this kind of treatment from Congress when the structures and the processes that exist are beginning to change but are not yet reflective. You would have quite a defense to make to Rep. Jackson if you could say, or if [Acting NIH Director] Ruth Kirschstein could say that every single institute has an apparatus that looks at special populations research, that they have an operating budget and an programmatic budget and they sit on the senior staff such that we believe that this model is a more effective model than the one you are proposing.
But what you have done is you have picked one model, under-funded it, under-resourced it, under-positioned it in the organization so that this one isn’t going to work either, and it is going to create more support for the Rep. Jacksons and new voices to push for dramatic change….
DONALD COFFEY [Johns Hopkins University]: Jackson said, set asides are not what is required—and here comes the punch line—minorities must have a seat at the power table.
FREEMAN: Can’t argue with that.
COFFEY: Do they have a seat at the power table? That is the question.
SIEBER: They have a seat.
COFFEY: They have a seat—is it at the power table? I don’t know.
SIEBER: Tell me what you would view as a seat at the power table?
LYTHCOTT: It means that, when Rick has senior staff together, no matter what they talk about, that the Office of Special Populations Research has to have somebody there. It means that, whether it is the budget, whether it is setting research priorities, whether it is setting the research agenda, there has to be a representative, and usually the chief of the office, present. There has to be an operating budget that allows him or her to hire appropriate staff and consultants….
FREEMAN: … I think you need to elevate this with somebody like Otis or whoever, who would be in a position to sit at the tables where the decisions are made, not just on this, but across the board. Then put the person in the position of really coordinating the war against cancer as it regards people who are underserved.
“Challenge” Requests Funds For Center
Brawley’s role in the center remains undetermined, though NCI sources said he will have a position. Brawley declined to comment to The Cancer Letter.
The planning of the center has been done by Jon Kerner, assistant deputy director for research dissemination and diffusion in the NCI Division of Cancer Control and Population Sciences, working with Freeman, Klausner, and DCCPS Director Barbara Rimer.
NCI plans to include a section on reducing cancer-related health disparities as a special “Challenge” section of the FY2002 Bypass Budget. A draft of the section provided to The Cancer Letter outlines the Institute’s objectives and associated funding requests.
Highlights of the funding request:
- Create a new and comprehensive plan to organize, coordinate, and monitor NCI activities in health disparities research, education, training, and health services support: $2 million.
- Improve capacity and accelerate knowledge through fundamental cancer control and population research: $12 million.
- Expand our ability to define and monitor cancer related health disparities: $3 million.
- Expand cancer control intervention research in prevention, early detection, treatment, and communications: $17.5 million.
- Expand the channels for research dissemination and diffusion: $7 million.
- Strengthen training and education in health disparities research: $1.6 million.
- Management and support: $1.5 million.
“Define What We Mean By Race”
Excerpts of Freeman’s remarks to the NCAB follow:
Three things rise to the top in my experience over the last 32 years in studying these issues. No. 1, I believe poverty is a overwhelming factor that is associated with a lack of resources and lack of knowledge.
I think that the culture people live within is extraordinarily important in determining what diseases they will develop and how they will respond when they need to do something about it. The relationship between lack of resources and culture is something we need to know a lot more about.
The third factor that comes to the top is the effect of social injustice in our society. I believe that when people are denied opportunities because of lack of economic or educational advancement related to injustice, that also influences what causes health disparities. So we will be building this new center by the desire to understand these very complex human factors.
There’s no question that profound advances in biomedical science have occurred over the last several decades, particularly beginning with the passage of the National Cancer Act. This putting of resources into discovery has been extraordinarily important and has contributed greatly to increased longevity and improve quality of life for many Americans. However despite his progress, the heavier burden of disease is borne by some population groups in the U.S., particularly the poor and underserved.
What the center must do is to more precisely define who these populations are that are not well served. It is not so clear to me that belonging to a socially and politically determined category drives disparity itself, unless the social injustice factor is the major cause of this disparity.
I believe the unequal burden of disease in our society is a challenge to science as well as a moral and ethical dilemma for nation. So I would urge us not to just look at these things from the point of view science, because I really believe that the people who created the National Cancer Act were fundamentally interested in helping the American people with this disease, to improve results, to increase mortality, increase survival, and improve quality of life. This becomes a moral and ethical issue, because doesn’t seem morally acceptable to me we can have the country doing well in many respects against cancer, but some parts of our society are not doing well at all.
There’s a critical disconnect between research discovery programs and delivery of the results. This disconnect is, in and of itself, a key determinant of the unequal burden of cancer in our society. Barriers to prevent the benefits of research from reaching all populations, particularly those who bear the greatest disease burden, must be identified and removed.
Racial classifications have been socially and politically determined, and have no basis in biology. The President’s Cancer Panel in a report three years ago indicated that there’s no biological basis for racial classification. Though race does not exist from biological perspective, it has been invented, racism does exist in our society. We need to distinguish society’s treatment of people in those categories from whether or not people are really biologically different.
Here is what I propose at this time, this is not written in stone. What is now called the Office of Special Populations Research is already in existence and has done some very good work. Seventeen major grants were given out in the spring, up to $60 million over the next five years, for the Special Populations Research Networks. This is a significant movement in the right direction to create research entities throughout our nation where you bring people who are in communities in connection with cancer centers, which will have many positive effects. The hope is that we can train some scientists that are not currently in the picture from certain minority groups, that maybe within five years these now-junior scientists could be moved to the point where they could compete for an R01. This is a wonderful plan.
I think now we need to elevate this discussion. So we’re going to elevate the current Office of Special Populations Research to higher level where there is more deep dialogue on what should be done….
I believe it’s very critical to determine what are real variables that cause disparity. It simply not enough to go with assigned categories as we have in the past, and almost assume that being in the category is the cause of the problem. I would hate it to be true and I don’t believe it’s true, that being an African-American person myself, according to the way they label me at this point, I’m already a victim of having a greater chance of dying in earlier time for cancer. I don’t believe it’s true.
I think it’s time now to focus deeper into those categories and find out what are the real causes health disparities and generalize those variables across all human beings. I think in the future when we use racial categories we should say what they mean. They are used in various ways. Sometimes they’re reflecting a belief in determination, sometimes believing that the racial category reflects the cultural difference. The think we should define what we mean by race, and then we can debate whether the assumptions are correct or not.
