October 2000 Volume 4, Issue 1:
Myeloma and Public Policy
An interview with IMF Advocacy Consultant, Greg Brozeit
The November 2000 elections mark the second anniversary of the IMF's advocacy program. In the past two sessions of Congress, the House and Senate Appropriations Committees have included directives in the legislation funding the National Cancer Institute (NCI) to strongly urge more funding for myeloma research (see box). This is unprecedented.
When Congress convenes for the 107th session in January 2001, the myeloma community will have to work together to translate those directives into substantive research activities. We asked
IMF advocacy consultant, Greg
Brozeit, to reflect on the past two years and provide a picture of where we have been and where we need to go.
Myeloma Today: We discussed public policy two years ago in your initial interview with Myeloma Today (Vol. 3, No. 3). How has the landscape for myeloma research activities changed?
Greg Brozeit: Two years ago, we weren't sure how much money the NCI spent on myeloma research. Today, we not only have an official figure cited by the NCI, but also a reasonable understanding of how to interpret and measure them.
Two years ago, the NCI had no research plan to target and treat myeloma patients. Today, as many of you know, the NCI has convened a Progress Review Group to develop a comprehensive research plan for myeloma. In addition, the IMF Scientific Advisors are developing a myeloma research "white paper" to provide a comprehensive overview of the field. Because of these and other activities, the myeloma community will have reputable road maps to measure and chart future activity and, hopefully, set new standards and expectations.
MT: What kind of standards and expectations?
GB: From a practical point of view, researchers must develop the knowledge to make myeloma a chronic, treatable illness - for today's patients. That must become the minimum standard. Myeloma research advocates must demand the resources to realize that standard. After that, the expectation should be to find a cure. The PRG and the IMF white paper will only provide myeloma research advocates with more authoritative and legitimate arguments for greater funding. But first and foremost, NCI has to demonstrate that it has the will to address myeloma research.
MT: Does the NCI have the means to implement an aggressive research agenda?
GB: The short answer is yes. It is a matter of setting priorities. When I conducted my first interview for Myeloma Today, the annual budget for NCI was $2.9 billion. Based on what we know Congress is likely to pass later this year, the fiscal year 2001 will be about $3.8 billion. However, according to NCI figures, during that same period myeloma research has increased by less than $4.5 million - from $10.7 million to $15.2 million. In testimony submitted to Congress in 1999 (see Myeloma Today, Vol. 3, No. 6), the IMF estimated that the real benefit to myeloma research was closer to $3 million. However one chooses to interpret these numbers for the myeloma community, they are dismal and unacceptable. And implicitly, the figures alone argue for more research just for the sake of equity.
MT: Realistically, how much of an increase in myeloma research activities could there be in the coming year?
GB: According to estimates provided last year to congressional leaders by Drs. Robert Kyle and Brian Durie, myeloma research activities in excess of $50 million could begin within the year. That figure represents research that has been approved but not funded by the NCI and other research supported by the IMF and other non-governmental sources. The PRG and the IMF Scientific Advisors' white paper should provide additional research strategies and goals. The myeloma community will have to educate Congress about the need to fund those recommendations.
MT: Can you give us some examples about how best to "educate" Congress?
GB: For the sake of political argument, I believe the myeloma community must focus on two numbers: 1% (the myeloma incidence rate in the U.S.) and 2% (the myeloma mortality rate). Using those figures as a guide, next year's $3.8 billion funding level for the NCI should provide between $38-76 million targeted for myeloma research. In any event, it should be substantially higher than the current $15 million the NCI claims it spends on myeloma research. And remember, according to the IMF's interpretation of those figures, the real benefit to the myeloma community of the $15 million is nearer to $3-4 million.
MT: What are the reasons for the lack of investment by the NCI into myeloma research?
GB: I think there are a variety of reasons for the current situation. It is important to remember that substantial increases in federal funding for medical research have been realized mostly within the last decade, thanks largely to congressional leadership and NCI Director Dr. Richard Klausner. Congress is in the third year of a five-year commitment to double the National Institutes of Health (NIH) budget and indications are that support will grow as long as the science shows demonstrable benefits. But as good as that news may be, it is
not enough. From an objective point of view, it is very understandable why, in the cancer research world, breast and prostate cancer research receive the greatest amount of attention and funding. They affect more people. This research has led to significant declines in the mortality rates among a variety of cancers. But not all cancers share in the good news, and that will cause policy makers to address these discrepancies in the future. That will take a much greater commitment to medical research than the federal government has been willing to take.
For example, the entire NIH budget will be less than $19 billion next year. Defense funding will be more than $300 billion. A small shift in priorities would encourage young scientists to seek opportunities in medical research rather than other fields. Within the medical research world, incentives have to be created to encourage cancer researchers to work in neglected fields like myeloma.
I spoke to a prostate cancer researcher last year whose real interest was in myeloma but "the funding opportunities just aren't there." The key is to significantly increase the funding pie for cancer research without succumbing to "either-or" arguments within the cancer advocacy community.
We are more than members of the myeloma community; we are members of a larger cancer community. That became apparent to us two years ago when we participated in The March: Coming Together to Cure Cancer in Washington, DC with tens of thousands of cancer advocates from throughout the nation. But to better serve the cancer community, we must educate about the particular needs of the myeloma community. By doing the latter, we add more value to the former. The goal is not carve out a niche for myeloma at the expense of other cancer research initiatives. It is more a matter of setting big picture priorities to give the research agencies more funds to research specific ideas.
MT: Please address the IMF's involvement with the cancer advocacy community?
GB: The IMF has joined in a number of coalitions to work within the cancer community. Last year we joined the National Coalition for Cancer Research, a 28-member organization dedicated to raising awareness about cancer research issues within Congress and among the federal agencies.
This year, we joined One Voice Against Cancer (formerly known as the cancer appropriations working group), a coalition of more than 40 organizations focused on lobbying for increases in funding for the NIH, NCI, and Centers for Disease Control and Prevention (CDC). This effort, led by the American Cancer Society (ACS), signals a marked change in the tactics of cancer research advocacy. The new head of ACS government relations, Dan Smith, is a former top level congressional staffer who brings a new perspective to our efforts. He has done a remarkable job of bringing together disparate voices under a common umbrella. Together, we are working to significantly increase overall cancer research funding. This will give congressional efforts to increase myeloma research, as well as all other types of cancer, a greater likelihood of being realized.
The IMF has also joined Patients CURe, the Patients' Coalition for Urgent Research, a coalition of more than 120 voluntary health organizations, universities, and religious representatives that supports implementation of NIH guidelines for research on stem cells derived from human cells. Although there is no research being undertaken specifically linking advances in this type of stem cell research to myeloma research, the IMF believes that increased activities will benefit the myeloma community. Therefore, by speeding up and diversifying current research, the IMF believes that cancers including myeloma will derive substantial benefits sooner rather than later.
Recently we became members of Cancer Leadership Council, a patient-advocacy coalition that takes a strong interest in Medicare and other regulatory issues and research funding issues. The head of the CLC, Ellen Stovall, organized The March: Coming Together to Cure Cancer. As the only myeloma representatives at The March, I find it particularly appropriate that we are members of CLC.
MT: What can myeloma patients, family, friends, doctors, and researchers do to aid the advocacy efforts?
GB: I want to emphasize that Congress is where the action is on major cancer research funding. Members of Congress and their staff members must become more aware about myeloma and the need for more research so that they can support and advise the leadership of the committees with jurisdiction of funding affecting cancer research. That is why members of the myeloma community must be vocal to their representatives. Without education about myeloma, we can hardly expect them to act independently on research funding or any other issue of importance to us. As I remind everyone in the myeloma community all the time, did you know about myeloma before the diagnosis of yourself, a loved one, or friend?
MT: What are the other issues you see coming up in the future?
GB: I think one of the major challenges in the future will be to create programs for the smaller cancers (such as myeloma, lymphoma, pancreatic and kidney cancers) at the CDC. Unlike NIH and NCI, where Congress "encourages, urges, and recommends" research directions within the agencies, CDC legislative directives are very specific. The agency will engage in no activity without specific directives from Congress. It is the applied side, so to speak, of the federal medical research apparatus.
At a recent briefing on CDC cancer prevention, I asked a representative from the agency what programs they had planned for the smaller cancers. He responded, "None." When we educate Congress about the need for myeloma research, we also need to consider how to apply the education to the public. That will be the role of the CDC. The advocacy community must make this a reality.
MT: Will political pressure speed up the processes to find better treatments and a cure for myeloma?
GB: We have made significant progress. We should be more hopeful than we were two years ago. But we must see concrete deeds that back up good intentions. The most difficult aspect of the advocacy program is the frustration of balancing the realities of time with the slow pace of the political process. As pleased as I am with our progress over the past two years, I am aware that myeloma patients want answers and results now.
This reminds me of a passage in Alan Lightman's novel, Einstein's Dreams. "For while the movements of people are unpredictable, the movement of time is predictable. While people can be doubted, time cannot be doubted. While people brood, time skips ahead without looking back."
Two years in political cycles is short; two years for a myeloma patient is, well, presumptuous for a non-patient to try to describe. In two years we have lost more than 23,000 myeloma patients in the U.S. and added more than 31,000 to our roster. We are making progress, but now that progress must increase at a geometric rate.
I am wildly optimistic about the future for myeloma research at the political level. At the same time, as I used to remind my former students, the American federal system is designed to be intentionally inefficient. But when you are diagnosed with a disease like myeloma, results become more important than process. In order to continue the momentum forward, we have to work together to make this wonderful, inefficient political system respond more effectively by providing the unique knowledge we have about myeloma to policy makers. It is the only way to make our work benefit as many of today's myeloma patients as possible.
"Multiple myeloma (MM) is an incurable cancer of the plasma cells of the bone marrow. MM is the second fastest growing hematological cancer in the U.S. The Committee is pleased that MM was included in an NCI progress review group and looks forward to hearing about the Institute's plans for the groups findings at the fiscal year 2002 appropriations hearing.
The Committee continues to urge NCI to support epidemiological and other data gathering activities relevant to MM and to coordinate efforts with Centers for Disease Control and Prevention, the National Institute of Environmental Health Sciences, the Office of Rare Diseases, and the Office of Research on Minority Health. The Committee encourages the Institute to disseminate and educate the public and health professionals about the symptoms of and treatment for MM."
- House Report 106-645
Editor's Note: Greg Brozeit can be reached at (818) 728-4291, by fax at (818) 783-6985, or via e-mail at