WASHINGTONLast year, tens of thousands gathered on The Mall in front of the US Capitol and in scores of communities nationwide to urge the federal government to make cancer the number one medical research priority. On Sept. 25, a candlelight vigil in front of the Lincoln Memorial will mark the first anniversary of that event, known as The March.
What impact did these gatherings have? Ellen L. Stovall, executive director of the National Coalition for Cancer Survivorship (NCCS), conceived the idea of The March and served as its president. She offered her view of its legacy in an interview with Patrick Young, Washington Bureau Chief of Oncology News International.
ONI: Was The March just a feel-good experience, or did it have a significant impact on cancer policy?
MS. STOVALL: I dont think The March itself had a significant impact on cancer policy. And I may get into trouble for saying that. I do feel that The March created an awareness on the part of people who deal with cancer that doing something together is important. We are divided along lines of specific cancersbreast cancer, prostate cancer, pediatric cancer, colon cancer. The March was about cancer. Nothing like that had been done before and it was important for cancernot just one type of cancerto be the story.
ONI: One goal of The March was to awaken what you called a quiet constituency to more actively support cancer research. Did it succeed in that goal?
MS. STOVALL: Its hard to quantify, but I feel it did. Cancer has become more of a political issue, particularly for people who are running for office. It also feels as though there is more energy in the cancer community and that the media interest in cancer stories is greater than it was before The March.
The Lance Armstrong story is a perfect example. He was at our press conference when we announced The March. We worked with him for a year and a half before he was Lance Armstrong, winner of the Tour de France, riding to victory as a cancer survivor.
What I am saying is that The March awakened the Lance Armstrongs of the world. I can look to individual cases where people became activists because The March empowered them.
What we have now are groups like pancreatic cancer survivors, groups who didnt have enough people to call themselves a constituency before. Imagining a constituency of pancreatic cancer survivors or lung cancer survivors was once almost unthinkable. People werent surviving long enough. And their family members were too disenfranchised or despondent to do anything.
That has changed. Cancer patients are really becoming cancer survivors. Even if they are surviving only a few months or a few years, many want to do something because they see an opportunity that wasnt there before The March.
ONI: What do you feel has changed since The March?
MS. STOVALL: Groups are working much more cohesively together than they did before The March. There is a recognition that there isnt just a medical, or academic, or scientific model by which to affect change. A lot of change can come from ordinary people.
The Marchs visibility allowed that to happen. Also, there is now an ongoing dialogue about what to do about cancercancer genericallyas an issue.
ONI: An ongoing dialogue with or among whom?
MS. STOVALL: The patient groups, for example. The Cancer Leadership Council that NCCS convened a few years ago has a lot more people interested in it and much more cohesiveness than before The March. To me, that is representative of the cancer community working better together.
The March had an intrinsic impact on us, in terms of consciousness raising, about what we can do together. It brought out a process by which people are talking about cancer now in ways that they werent doing before.
It has created a dialogue about how much money for cancer research is enough money. It has forced hard questions to be asked by folks who hadnt really asked them together in a community way. That, to me, is a measure of change that is good.
ONI: On the day of The March, President Clinton issued two directives. One was that there would be an increased program of clinical trials in cancer. The other was that the federal cancer programs would fully integrate cancer patients and advocates into the process of setting research priorities. What is the status of the two?
MS. STOVALL: The Administrations budget request had the clinical trials language in it that we wanted. But the Presidents budget is not moving through Congress in a way that will include that. When the Congressional Budget Office scored the proposal, they again said there wasnt money enough to pay for the increase.
There are efforts by the Administration, as evidenced by NCI director Richard D. Klausners creation of the Directors Consumer Liaison Group, to get consumers more involved. There are also efforts at NCI to get more advocates on peer review panels, where they have never been before. Only the Department of Defense program has had advocates on peer review panels.
ONI: You spoke of the budget proposal. I remember Vice President Gore saying at The March, We want to be the generation that cures cancer. Last year, Congress gave a 15% increase to NCI; this year, the Administration asked for a 2.4% increase. What kind of support is that for cancer research?
MS. STOVALL: Thats a real disappointment. Not just the difference between the 15% and the 2%, but the effects that will have on science. The National Cancer Advisory Board [NCAB] discussed this roller-coaster effect. Even the Secretary of Health agreed when we wrote her that it is not a good thing to do. I dont think the Administration has been sensitive to the effect that this has on a whole new generation of scientists. Seeing that kind of swing in one year has a chilling effect on them.
ONI: NCABwhich the President appoints and on which you sitdid more than just discuss the budget. It sent a formal letter of protest. What was the reaction of the White House?
MS. STOVALL: We got a very nice letter back, but it was your typical form letter. We have continued to talk to them. In a letter to us, HHS Secretary Donna E. Shalala said that while she has publicly stated her concerns about up and down funding levels, the President has enormous constraints on his budget. Its what you would expect them to saythat there is just so much money and just so much we can do.
ONI: One underreported aspect of The March was the recommendations of its 164-member task force. It made a number of proposals, from basic and drug research to prevention and quality of life issues. Are you satisfied with the progress made in these areas?
MS. STOVALL: The Task Force report has been taken very seriously by a number of people, inside and outside of government. Programs that were merely being thought out as possibilities or hopeful improvements to the climate in which research is done are now being talked about at the level of how to make them happen.
That is tremendous progress from where we were, and I think The March and that report are direct catalysts for that happening.
ONI: Is there any structure left from The March, or have the groups gone back to their own agendas?
MS. STOVALL: Some of us have stayed together to pursue these issues with the leadership in Congress, at the National Cancer Institute, and in industry. The American Association for Cancer Research has gotten much more active with patient groups since The March. Theyve taken up the task force report as a platform issue and are working closely with their own scientists and their own education efforts to try to see some of those things through, at least in their capacity to influence such things. The American Society of Clinical Oncology, the Oncology Nursing Society, and NCCS have done the same.
ONI: What do you see as the legacy of The March?
MS. STOVALL: A new awarenessnot just the awareness that the media created, but among ourselves about how much more we could do if we were working together.
We are not operating in a vacuum any more, and that alone is such progress. It really does suggest a new way for dealing with some overarching issues in cancer, such as research funding, clinical trials reimbursement, and access to quality cancer care. The trick is not to fall back into the mode of only advocating for your own organization or type of cancer, but to get to the issues that are affecting all of us. The legacy of The March is that this is what we are trying to do.