April 11, 2016
On April 6th the Prevent Cancer Foundation kicked off our annual Dialogue for Action™, bringing together community health leaders, government staff, oncologists, researchers, and advocates to discuss issues of cancer prevention, screening and early detection. That morning featured an advocacy workshop on the 21st Century Cures Act and the companion bill being drafted in the Senate. This was a timely workshop, as the final committee hearing for the Senate bill was being held at the same time. The panel, comprised of Carly McWilliams, a staffer for the House Energy & Commerce committee, Mary Lee Watts, Director of Government Relations and Advocacy for the American Association of Cancer Researchers, and Lisa Schill, a parent advocate and Vice-President of RASopathies Network USA, spoke to a group of about 60 participants.
Ms. McWilliams walked us through the process of putting the bill together. From the beginning Rep. Fred Upton, chair of the Energy and Commerce Committee, worked to make the bill as transparent and bipartisan as possible. He and Rep. Dianna Degette, the Democratic co-sponsor, reached out to as many patients, researchers, and government regulators as possible. They also held “Roundtables” instead of congressional hearings, which are more informal, in order to foster open dialogue with members of the administration, patient advocates, health care organizations, physicians and researchers. Ms. Watts discussed her own organization’s involvement in the bill, and in particular the importance of maintaining mandatory funding for the National Institutes of Health and the Food and Drug Administration in order to ensure that we weren’t leaving good science on the table. Ms. Schill spoke of her experience as the parent of a son with a rare disease. She and her son wrote several letters in support of the bill, which they hope will encourage additional research into rare diseases and includes a stronger voice for patients and their lived experiences in drug approvals.
All three speakers emphasized the importance of this bill in continuing to fund research into all diseases, streamlining and updating the regulatory process, and leading to cures for more people in the future. In order to see this pass the Senate, they encouraged those in the room to become more engaged in advocacy, writing to or calling their Senators to urge them to bring the Senate bill to the floor. You can write to your Senator at our advocacy site, and sign up to be a cancer prevention advocate to stay up to date on this and other important legislation.