‘The March’ Aims to Wake Up Patients
‘The March’ Aims to Wake Up Patients
SILVER SPRING, Md--On September 26, 1998, an event known to its organizers as simply "The March" will take place across the nation. Conceived by Ellen L. Stovall, executive director of the National Coalition for Cancer Survivorship, "The March: Coming Together to Conquer Cancer" is not a march in the traditional sense, but will encompass many different events in many cities.
One major aim, Ms. Stovall said, is to "make cancer the number 1 priority of our national leadership with a dramatic increase in funding for cancer research." General H. Norman Schwarzkopf will serve as the honorary chair.
Ms. Stovall, who underwent her first treatment for Hodgkins disease in 1971 on the day then-President Richard M. Nixon signed the National Cancer Act, discussed the upcoming event with Patrick Young, Oncology News Internationals Washington Bureau Chief.
ONI: What is the aim of The March?
MS. STOVALL: The main purpose of this event is to awaken a quiet constituency, that is, people with all types of cancer who havent really been heard from when it comes to decision-making about health care and research funding in this country.
So, first, were aiming for a national awareness. When I talk about an awakened constituency, I dont mean that people are unaware of cancer, but rather that they dont feel empowered to do anything about it.
A massive public education and awareness campaign is needed to put cancer at the top of our health care agenda. That is what this campaign aims to do: to awaken this quiet constituency and then encourage them to speak out and to ask questions of our local leaders, our local health care providers, and our national leaders.
ONI: What kind of questions would you expect this new constituency to ask?
MS. STOVALL: The big question is: Are we doing everything we can to mount a full-scale effort to eradicate this disease? The question isnt just, are we spending enough money on research, but goes beyond that, to include such questions as to how the money is being spent, who makes the decisions on funding, and by what process.
For example, are the processes currently in place friendly to the efforts of cancer researchers to better control this disease? Is our health care system accountable to people with life-threatening diseases like cancer? How are our research priorities being set, and are enough people involved in setting those priorities?
The National Cancer Program is enormous. Do we have all the mechanisms in place to coordinate it, to communicate well within it? Does competition over distribution of a limited set of funds drive the decisions? Do political whims drive the decisions? These questions need to be addressed.
ONI: What activities do you plan for September 26?
MS. STOVALL: We want to reach out beyond the cancer community to labor groups, education groups, environmental groups, and other groups that are usually on the fringe of activities when it comes to cancer programs.
Although cancer rallies and races are very valuable aspects of cancer awareness and fund raising, these activities may not reach out much beyond the nations cancer centers or community-supported cancer organizations.
What is different about The March is that it is really meant to awaken a new constituency--everybody affected by this disease.
The events on September 26 will be media events, but media events with substance. Whatever the event--a bike ride, a river walk, or a political event--it will include key messages delivered through celebrity spokespersons. We have adopted the Earth Day model for organizing our event.
ONI: You have talked about making cancer the top priority of health care funding. How do you justify putting cancer number one when more people die of heart disease, for example?
MS. STOVALL: We feel that epidemiologically the numbers justify it. Looking forward 10 years, as the population ages, projections suggest that cancer will overtake heart disease as the leading killer of all Americans. There is no other disease that will affect one in two men and one in three women in this country over the long term.
Certainly, we do not mean to minimize the suffering or needs of people with other diseases. But we feel that we must look not only at the mortality figures but also at disease morbidity. Living with cancer and its treatment can take an enormous toll on patients as well as their families.
I have lived in a family with heart disease, diabetes, and cancer, and they are all terrible diseases to live with. But we feel that less is known about the prevention and treatment of cancer than is known about many other diseases such as heart disease, for example, so we feel the time has come for more attention to cancer.
ONI: Is there likely to be a tug-of-war between different groups seeking money for their disease?
MS. STOVALL: Whenever people are thrown scraps, they will fight over them. The real problem is that overall we are not funding biomedical research efforts adequately.
ONI: Can large additional sums be spent wisely on cancer research?
MS. STOVALL: We can always spend more money on biomedical research if there are good research questions to ask. In my work, I am exposed to people whom I respect enormously, from leaders in advocacy to Nobel Prize winners, and they dont always agree on how much funding is needed or how it should be spent.
Before we start asking for major increases in funding for cancer research, we need to examine our entire system of research funding and perhaps try to develop a system that marries the best of private sector research with research funded by public dollars.
We need to bring together key scientists to discuss the most promising research opportunities and to examine how we are spending research money now and how we should be spending it in the future.
ONI: How would "The March" help this problem?
MS. STOVALL: Whenever there is a more global awareness about a problem, more people are interested in working on solutions to it. I think there is a lot of apathy right now.
Decision-making is in the hands of a small group of people, and we need to broaden our thinking. We need new energy and, as I said, a newly awakened constituency. Then I think Congress will become more interested in funding cancer research.
Ultimately, you want to change political reality, and the political reality right now is that we have an appropriations process that is not very friendly to biomedical research.
I think the public has to demand accountability for the way our federal dollars are spent, and I would like to see this nations people demand that accountability in the area of health care, both in funding and in the application of that funding.