Are you more interested in myeloma research or cancer research? Is there a difference? What about other issues, like drug coverage and payments for PET scans? Can myeloma issues be separated from cancer issues in general?
What goals should drive cancer public policy? How can those goals be translated into effective cancer advocacy? Are the policy goals different for myeloma advocacy? Should they be?
I remember having lengthy discussions about these questions at the first One Voice Against Cancer (OVAC) advocacy day five years ago. I thought about them again as I returned from the 6th annual OVAC advocacy day on March 14-15, 2005.
At the time, since myeloma is the IMF's primary interest, a number of people didn’t quite understand why we were part of a coalition of all the other cancer groups in OVAC. Shouldn’t we be focusing on myeloma research instead?
Over time, the importance of the OVAC message became more obvious. As a purely political exercise, it is impressive to have groups representing so many patients come together for a common message in support of funding cancer research and prevention programs. To have cancer advocates focus on federal funding for all cancer programs was new. All who attended saw this as a new direction. All who attended realized that their particular cancer would benefit more by joining all cancers in advocacy.
In the past advocates tended to focus on their particular type of cancer. This began to change after the success the community experienced during the period of the doubling of the budget of the National Institutes of Health (NIH). Unfortunately, the meager budget increases that have followed over the past two years and the bleak outlook for funding threaten to break that fragile coalition apart.
OVAC's unity was driven by reality: federal funding for cancer research was not divided up by particular diseases. When recommending its funding for medical research, Congress quite rightly defers to the directors of each of the research institutes and their science-based missions. That is how it should be. The best scientific knowledge should drive the processnot personal or political opinions. Research decisions are supposed to be de-politicized.
Think of the opposite route. Research driven by political pressure is just a bad way to do the public's business—even if you may be a short-term beneficiary. Think about the type of world we would have if politics and public relations trumped scientists when it came to making decisions about the direction of cancer research. We would have a “disease of the month” lottery mentality driving the decision making process. Political support for research would be dependent on a celebrity being diagnosed with the disease.
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Politicizing the federal research process also takes away the need for the consensus needed to support the mission of NIH through comprehensive, increased funding for the institutes. Instead, advocates and well connected patrons can focus on small victories that may benefit a group of patients or organizations in the short term. The danger exists, however, that such work will not be integrated into the overall mission of federal health agencies.
That is not to say that there are not a number of programs specific to disease groups that should be and are controlled by Congress. For example, the Centers for Disease Control and Prevention (CDC) cancer programs focus on specific diseases for screening tests and education programs. The danger for members of the cancer community is a focus on these at the expense of building coalitions to support the mission of NIH.
And if any cancer group does not put an increase of funding for NIH at the top of their advocacy agenda, it brings into question the seriousness of their advocacy goals. Trying to put political pressure on NIH at the same time that funding is restricted and going down is the equivalent of rearranging the deck chairs on the Titanic.
Two years of funding increases below the annual rate of inflation and a president’s budget that calls for a 0.35% increase in cancer research are a call for a unified response from the entire cancer and medical research community.
Last year the Senate Appropriations Committee said as much in its comments on NIH funding (Sen. Rept. 108-345):
"Although it is impossible to predict what cures or new treatments will emerge as a result [of doubling NIH funding between 1998-2003], it is certain that the infusion of new funds during the doubling process helped push back the frontiers of scientific knowledge, while attracting the best and brightest minds to careers in medical research. However, the accumulation of fundamental knowledge for its own sake is of little value unless it finds its way to hospitals and physicians, where it can be put to use in promoting good health or diagnosing, preventing and treating disease. For that to happen requires a robust commitment of resources over a sustained period."
Congress understands how to support research. They just have to make it a national priority. Advocates need to come together to help Congress and the administration understand what is at stake.
It is not unlike the challenge General George Marshall faced in preparing the plan that ultimately won World War II. In reflecting on the challenge to defeat the Axis powers, Marshall's biographer noted "Again and again [Marshall] attempt[ed] to combat what he had come to call "localitis," the tendency of commanders to think their theater the most important, the most in need of more men and materiel and the most difficult in which to fight a war."
As a myeloma community, we understand that the urgency of finding better treatments is like that of fighting a world war. We want our frontline fightersresearchers, doctors, nurses, and administratorsto have the best tools available to wipe out this disease. Researchers understand how much can be achieved soon to impact cancer patients’ lives. We just need to give them the tools to let them. But we have to avoid the "localitis" of focusing on our particular disease slowing down national progress. That is the best way for the myeloma community to winas a part of a broad-based national movement, not apart from it.