Cutaneous Lymphoma Foundation
10
Advocacy In Action - Summaries
One Voice Against Cancer
One Voice Against Cancer Coalition hit Capitol Hill in July to make the fight against cancer a national priority. CLF
representatives joined over 100 other representatives from a wide variety of cancer advocate organizations from across the country to
bring the voice of cancer patients to legislators. In addition to presenting a detailed request for financial appropriations to support
cancer research, the group educated members of Congress on three main priorities:
• Increased funding for cancer research at the National Institutes of Health and National Cancer Institute, along with cancer
prevention and early detection programs at the Centers for Disease Control.
• Fully supported drug development at the Food and Drug Administration, along with the Health Resources and Services
Administration Patient Navigator Program and Title VII Nursing Programs. These programs help cancer patients get well
faster by bringing new cancer drugs to the market and training the cancer care workforce of tomorrow.
• Becoming active members in the House Cancer Caucus and Senate Cancer Coalition.
Cutaneous Lymphoma Foundation Joins REAP
The CLF has joined the Regulatory Education and Action for Patients, (REAP) a collaborative of patient advocate groups
sponsored by the National Patient Advocacy Foundation.
This umbrella organization includes over 40 different patient groups and collaborates with the National Patient Advocacy
Foundation on legislative and regulatory policy, bringing the voice of the patient into these important issues. We are excited to be a
part of the organization and able to share with you policy updates and information that affect all of our patients.
In July, Susan Thornton, CEO of the CLF, participated in the semi-annual REAP meeting, learning about the economic impact
of the Supreme Court ruling supporting the Affordable Care Act. As with any legislative policy, it is complex and is an ongoing
process. Read the press release and a detailed briefing about the issue on our website,
.
Advocacy Meeting with FDA
Cutaneous Lymphoma Foundation board member and Sezary patient, David Lamb joined Susan Thornton (CLF CEO and
mycosis fungoides patient) in a one-on-one meeting with representatives from the patient liaison group within the Food and Drug
Administration.
David and Susan were able to share detailed information about cutaneous lymphoma and its impact on patients living with the
disease. Other discussion topics included medication accessibility challenges and the need for more research and drug development,
especially for the early stage of the disease where there has not been much progress in recent years.
The FDA representatives, who were previously unaware of CTCL, were very open to hearing about the disease and made several
recommendations for ways the voice of cutaneous lymphoma patients can be heard within the FDA and in the drug approval process.
As Chair of the Advocacy Committee, David will be working with committee members to create additional opportunities for CLF
patients to play an important role in the FDA. Look for updates on the CLF website on what is happening in the FDA and its
impact on cutaneous lymphoma patients.
AAD Legislative Conference
The Cutaneous Lymphoma Foundation recently joined dermatologists
from across the United States for the American Academy of
Dermatology Legislative Conference in Washington, DC. Along
with attendees from the Coalition for Skin Diseases, Director of
Development Kira Mann (pictured second on the right) met with
members of Congress to discuss upcoming legislation regarding tanning
bed access for minors, increased federal funding for research on rare skin
diseases and the repeal of the sustainable growth rate (SGR) formula for
Medicare, which will impact access to care for Medicare patients.
The Foundation continues to stay active on Capitol Hill so that our
patients have a voice with those who are making the decisions that
impact patient care.
