The Power of Advocacy
Congratulations and THANK YOU to Marti Hill, support group leader from Tampa/St. Petersburg area and patient for being the IMF’s Advocate of the Month!
Earlier this year, Marti, along with our advocacy team, visited her congressmen in Washington to discuss issues that are important to her as a patient and to make some very specific requests that would benefit the myeloma community. I asked Marti, as a patient who hasn’t participated in meetings like this before, to tell everyone what this experience meant to her.
In Her Own Words
“A Spring trip to D.C. What could be better? What I didn’t expect was that the experience of meeting my legislators’ staffers would be a pleasant one. But given the preparation on Christine’s part, the encouragement on Arin’s part, I have become a believer in the power of advocacy. One of the things that worked for me was lowering my expectations. That seemed to allow me to spend energy on getting clear about my message to these people and that made all the difference. What I wanted most of all was a conversation in which I was heard. That happened. Getting passionate about the power of research (read: I am still alive) and articulating the importance of my own story connects so many of us on this road. Each one of us has a unique story and sharing it with our legislators has the potential of bringing much needed research money to this cancer called multiple myeloma.”
Delivering Our Messages
By Arin Assero, Director of Advocacy
The day started off with a meeting at the office of Representative Bill Young (REP-FL-10), who is a member of the House Appropriations Committee, and more importantly a ranking member of the Department of Defense (DoD) Appropriations Subcommittee. Because of his standing on this committee, Marti started the discussion with research and how important it is to her as a patient, which presented the perfect opportunity to discuss appropriations requests for Fiscal Year (FY) 2011.
Marti, along with the help of Christine Murphy, our Director of Government Affairs, requested that Representative Young support $50 million for the Peer-Reviewed Cancer Research Program (PRCRP), funded through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). In addition to that, she talked about further funding opportunities through the NIH and the CDC, specifically, the Geraldine Ferraro Blood Cancer Program, which, in the past, has helped the IMF reach out to the underserved community. In addition to research funding, Marti focused the conversation on policy when she asked for Rep. Young to co-sponser the Cancer Coverage Parity Act (HR 2366). This bill, which the IMF, along with the help of many patients, has worked on at both the federal and state levels, eliminates disparities in insurance coverage for oral and intravenous treatments. As you’ve heard from previous advocates, it’s an issue that affects many patients.
Later that afternoon, at Marti’s meeting with Senator George LeMieux’s office (REP-FL), she focused again on appropriations requests. Because Senator LeMieux is a member of the Senate Armed Services Committee, the advocacy team highlighted that, according to the Institute of Medicine (IOM), military personnel may be at heightened risk of developing a form of blood cancer as a result of their exposure to chemical and biological agents. In fact, the Department of Veterans Affairs presumes blood cancers to be service-connected for Vietnam veterans and offers medical and disability benefits to affected individuals. The IOM has noted this link in Gulf War veterans as well.
Perhaps, the most profound meeting came at the end of the day, where Marti shared her personal struggle in dealing with the Medicare doughnut hole with the staff of Senator Bill Nelson’s office (D-FL). She was grateful that the recent passage of health reform addressed this issue, but made clear that in the 10 years that it will take to completely close this gap in coverage; many more myeloma patients will face the difficulties of finding the money to cover their treatment.
While it seems to take some time to get to real solutions in this tangled web of policies, and a lot of preparation and follow up is required to get results, we must remember - EVERY CONVERSATION COUNTS and if WE, as patient advocates, don’t speak up, who will?
Thank you Marti for truly giving a voice to the myeloma community!