Lobbying congress to make cancer funding a priority: What scientists can do

Abstract

I never thought that one day I would go to Washington, D.C. and lobby for increased NIH funding and for the importance of cancer research, but that’s exactly what I did on April 25 and 26, 2006. I always assumed someone else would do it if it was necessary or that things would just get better on their own. Well, I’ve been waiting about 3 years for the funding situation to improve and it just hasn’t happened and so it is clear more efforts are needed by many more people. With a flat budget that is not even keeping up with inflation, and with very few grants currently being renewed or funded at a time when so many promising breakthroughs are occurring, scientists need to get actively involved in reaching out to those that make the decisions that will ultimately affect us for years to come. I always assumed that because cancer is so deadly and so prevalent that it is obvious funding is needed and should be sustained until impact on the long-term survival of most patients is achieved. I had the opportunity as a member of the American Association for Cancer Research (AACR) Science Policy and Legislative Affairs Committee to get involved and to learn something about the complicated processes of lobbying for increased funding, how appropriations are made, how the national budget is passed and the great efforts that are needed by each person who cares about the outcome and the state of NIH funding. AACR President Geoff Wahl actively participated in this particular event’s lobbying activities, as did Roy Weiner, Director of the Cancer Center in Hurricane Katrina-affected New Orleans, among several other AACR members.The first day I arrived for training to lobby. This was a half-day event organized by One Voice Against Cancer (OVAC) a national organization that represents at least 40 societies or groups that have agreed to work together to address the issue of cancer funding. At this particular event there were over 150 people representing the various member groups including AACR, ACS, Lance Armstrong Foundation, PanCan, and many others. I was amazed to see how active cancer survivors are in this process. I learned there are over 10 million cancer survivors in the U.S. who represent an extremely powerful group of tax-payers, voters and advocates for cancer research and its funding. They each have their own unique story of survival and when this is mobilized towards the purpose of supporting research it can be extremely effective. Cancer can affect anyone.The day’s agenda included short speeches by Senator Harkin (Iowa) and Representative Castle (Delaware) who shared interesting stories and their support for cancer research and the efforts of OVAC. The Specter-Harkin Amendment adding 7 billion dollars to the NIH budget was passed earlier this year by the U.S. senate and the Castle Amendment proposing similar additions to the NIH budget is currently being discussed in the U.S. House of Representatives. The point was made that 90% of the job of lobbying for increased cancer research funding is coming to Washington and being there to tell the stories of survival or to make the arguments that cancer research should be a very high priority. It was clear that OVAC had hit upon something very important which is to combine the efforts of all those interested in cancer research funding under one voice rather than having divisions along organ site or specific initiative or program. We received general training in making the case with busy congressmen and women in very little time. We spent time learning how to connect with them as their constituents, telling them who we are and what we are doing and why cancer research funding should be a high priority. We had several break-out sessions that covered detailed information about the current and recent NIH and NCI budgets, trends in funding, and other very useful information about why investing in cancer research is so important at this time. There were discussions about the nursing shortage including faculty. We practiced within our groups making our case with congressmen and women or their staff. We spent sometime getting to know people from our own state or district who had come to the event, as we would be working together the next day. We had an opportunity to ask questions from the trainers as well as those who had done it before. We received our appointments for meetings and learned whom we would meet, so that we could plan our visits.The second day started with learning about some changes in our schedule as well as additional visits that had been arranged. We then began our visits to Capitol Hill. A group of us from the state of Pennsylvania were scheduled to visit with each of our 2 senators, Rick Santorum and Arlen Specter during the morning and then with several representatives throughout the afternoon, including those from our home districts. Our group from Pennsylvania included representatives from AACR’s Science Policy and Legislative Affairs Committee (Mark Mendenhall, Kathleen Mulder and myself) who would provide the scientists’ perspective as well as several cancer survivors who each had compelling and sometimes emotional stories. They were survivors of prostate cancer, melanoma, Hodgkin’s disease, and multiple myeloma in our group. They are all very active in several organizations that support research.We were fortunate to meet with Senator Rick Santorum who had voted for the Specter-Harkin Amendment requesting 7 billion dollars to be added to the current NIH budget to make up some of the short-fall back to near 2005 levels. We also met with Jen Vesey, his Legislative assistant. Senator Santorum made the point that the NIH budget had doubled to which we responded that while this was true, the doubling ended in 2003 and the budget has essentially been flat ever since. The senator also made the point that there are very many requests from many groups including those interested in other diseases such as diabetes, Alzheimer’s disease or AIDS, and he was glad to see the organization of OVAC with its member groups working together. We started making arguments that we repeated over and over with each person we met with for the rest of the day. The survivors shared their stories and how research could ultimately help them, their children, grandchildren or their friends. Some shared that just by being there as long term survivors they had lived to see their grandchildren. Others were affected by cancer at a young age and are facing a future of uncertainty regarding recurrence or second malignancies. Others mentioned that we have an aging population and we need to be ready when the baby boomers reach 65 after which most cancer develops. We informed Senator Santorum that the pay-line is approximately 10% currently at the NCI and that many of our senior colleagues are leaving the country for positions elsewhere that support their efforts. We mentioned that many outstanding grants are not being funded or renewed. We mentioned that important progress is being made, that there is momentum, and that this is not the time to slow down or not keep up with inflation or previous growth. We said that while the NIH budget was flat from 2005 to 2006 there was actually less money for cancer research because of money being spent on other areas including bioterrorism. We mentioned over and over during our visit to Capitol Hill that even those precious few NIH grants that are funded then undergo significant cuts that this year are 29% after any cuts by the reviewing study sections. Senator Santorum and Jen Vesey each reassured us they would maintain support for NIH funding.Everyone we met on Capitol Hill was sympathetic and no one said no, they would not support cancer research funding as a high priority or that they would vote for budget cuts that reduce or keep flat funding for cancer research.Our group from Pennsylvania met with Jill Canino, Legislative Correspondent in Pennsylvania Senator Arlen Specter’s office. She understood exactly why we were there as Senator Specter has been a most effective supporter and author of the Specter-Harkin Amendment. As a cancer survivor himself, he knows all too well the importance of cancer research and the impact it has had on earlier detection and treatment of cancer. We gave our stories and made the arguments. Jill took notes and reassured us that Senator Specter would continue to be supportive of increased funding for cancer research. As an aside, while we were waiting in the reception area to meet with Senator Specter’s staff we had an opportunity to see many historical photographs of Arlen Specter going back to President Eisenhower and Martin Luther King, Jr. to Nixon, Ford, the Clinton’s and the Bush’s, as well as Ariel Sharone and Joe Paterno among many others.In the afternoon we headed to the House Office Buildings for the remainder of our meetings. The entire group from Pennsylvania visited with Congressman John Peterson who represents a large portion of North Central Pennsylvania. Some of the cancer survivors knew him personally and led the introductions and discussion. When the scientists spoke, Congressman Peterson listened and asked important questions such as what new drugs has research produced. When we mentioned drugs such as Gleevec or Iressa or Avastin we were asked if the doubling of the budget contributed to this progress. With each member of Congress we would meet we mentioned the Castle Amendment that would add 7 billion dollars to the NIH budget and urged them to support this. Congressman Peterson asked other important questions such as where would the money come from to support the NIH, and suggested some possibilities. He was friendly and positive about our cause and left us with the impression we could count on his support of the NIH and funding for cancer research.For the rest of our meetings we split up into smaller groups of 2, 3, or 4 people. By this point we each felt like we could easily make our case for support of cancer research. A small group of us met with Michelle Anderson-Lee, the Chief of Staff for Congressman Chaka Fattah from the Philadelphia area. She listened carefully to our stories and indicated that she understood the importance of cancer research and its funding. We mentioned the Castle Amendment and why it is important to maintain and increase funding for cancer research. For this meeting we were joined by a young scientist from St. Louis and Associate member of AACR who shared his perspective on the cancer funding shortage and the need to support scientists in training as they represent the future.A couple of us met with Sarah Beatty in the office of Representative Curt Weldon from my Home District. She listened carefully to both the survivor’s story and to my concerns about how the current shortage of funding for cancer research is adversely affecting progress and how it is impacting both senior or younger scientists alike. She assured us that Congressman Weldon would be supportive of funding for the NIH and cancer research. As we had done with other members or their staff with whom we met the survivor invited them to participate in local events and I invited them to come and visit our institutions and see our labs and learn about what we are doing and why we need their support of the NIH and cancer research funding.Our final meeting of the day was with Congresswoman Allyson Schwartz and Kate Winkler, her Legislative Director. Allyson Schwartz represents the 13th District of Pennsylvania including part of Philadelphia. We discussed our concerns and learned that Representative Schwartz was visiting the NIH the day before and had learned a great deal about various programs including cancer research and clinical trials for cancer patients at the NCI. She indicated her support for increased funding for the NIH and for cancer research. We invited her to visit our institutions to meet our scientists and to see examples of how the NIH support is being spent in the war on cancer.I enjoyed this trip to Capitol Hill that was different from any other I have taken. I learned from several people we met with that personal visits really do matter and can make a difference. Equally important is follow-up, the power in numbers and the importance of being a constituent of a law-maker who will be up for election in the near future. Hopefully our message was heard and that the OVAC group in its totality representing most states was able to reach many leaders to make the point that cancer research funding must be and remain a high priority. This is certainly something I would do again for a cause I strongly believe in such as funding for cancer research. It was not only an educational and fun day, but also an important activity that all those who care about cancer research and its funding should consider doing. The next time the AACR or other cancer advocacy or coalition group asks for action before an important vote that affects scientists, we should all realize that the people on the other end do get the message, are affected by it and will respond to it. The next time a grant comes close to being funded but doesn’t quite make it through the system might be a good time to go see our U.S. senator or our U.S. representative to let them know about the current state of affairs in the fight against cancer. We as scientists can become more active in various organizations including AACR, ACS and others that care about the future of cancer research in being able to make the breakthroughs that will help cancer patients. May be by doing so and by being persistent the tough times will start to get better in the area of cancer research funding.