Sunday, April 06, 2008
Dr. Gershon Goes to Washington
I arrived this afternoon in Washington DC (well technically Alexandria, Virginia) as part of Mission Days for the Leukemia and Lymphoma Society (LLS). I was honored to be asked to represent the Rhode Island contingent of the society as a volunteer and advocate. The idea of Mission Days is to meet with the congressional delegation from my state in order to advocate for programs that are important to the LLS. People from all over the country have come to Washington to advocate for blood cancer research. I will receive training tomorrow, and on Tuesday, I spend the day on Capitol Hill meeting with the Rhode Island Senators and Congressmen. I received the schedule today and my group has meetings with Senator Jack Reed and Congressman Patrick Kennedy. We will also be meeting with legislative staff for Senator Sheldon Whitehouse and Congressman James Langevin.
This is very exciting for me and represents a significant role change as well. While I have worked hard at fund raising for the LLS, I am now going to be advocating their agenda. Apparently I have a strong voice as someone who has been treated for a blood cancer and has been the beneficiary of the research that has been crucial to me. Perhaps this is where my experience can be most useful to others. I remember when we met with Dr. Druker in the fall we asked him what would be important for fund raising for his research. He said that more money is needed for the National Institutes of Health and National Cancer Institute.
The legislative agenda includes 4 important issues, increased funding for the National Institutes of Health and the National Caner Institute, the creation of a Blood Cancer Research Program at the Department of Defense, and Access to Clinical Trials. I was a little unclear about the last one, but apparently when someone enrolls in a clinical trial (e.g., testing a new medication) insurance companies can deny routine costs such as blood work, doctors visits, etc. During normal treatment (like I have undergone), the insurance company has paid for everything. If the clinical trials did not exist, however, the development of Gleevec and other treatments never would have occurred.
I will be writing as much as possible about the Mission Days, particularly after the day on Capitol Hill.