On May 23-24, 2011, Susan Thornton, cutaneous lymphoma patient and the Foundation’s new Management Consultant for Programs and Services, participated in the One Voice Against Cancer (OVAC) Lobby Day in Washington, DC.
OVAC is the nation’s largest coalition of organizations advocating against cancer and OVAC Lobby Day is one of the largest cancer advocacy events on Capitol Hill. The Foundation was invited to join through its partnership with the American Academy of Dermatology and, during this event, 40 cancer organizations descend on Capitol Hill to send one cohesive message to Congress about the importance of federal funding for cancer research and prevention programs.
During her visit, Susan met with many legislative staff members including those for Senators Bob Casey and Pat Toomey to advocate for the five areas of focus discussed during OVAC visits:
Because the economic climate is poor, OVAC members’ visits were of particular importance as many line items in the federal budget that help cancer patients may be decreased including funding of research at the NIH, funding of cancer prevention efforts at the CDC and funding of cancer drug approvals through the FDA.
In meetings with the legislative staff members, Susan was able to heighten awareness for the Cutaneous Lymphoma Foundation, discuss the burden of cutaneous lymphomas on people suffering with its debilitating effects, and encourage continued and increased financial support for federal programs that can help those affected by cutaneous lymphoma.
On Monday, Oct. 31, 2011, President Barack Obama issued an Executive Order addressing drug shortages, which have plagued patients for much of the last year. The Executive Order would do three things: 1) expand reporting of certain shortages, 2) speed review of applications to alter or begin production of drugs in short supply, and 3) provide more information to the Justice Department about possible price gouging.
The Executive Order on Reducing Prescription Drug Shortages is available on the White House website here:
Additionally, the U.S. Food and Drug Administration (FDA) has provided materials describing the FDA's actions on this issue on the agency’s website, which are available here:
The Cutaneous Lymphoma Foundation has been aware of the cancer drug shortages and has been encouraging action from our stakeholders to promote efforts to remedy the situation. Legislation to help address drug shortages has been introduced in the House and Senate but has not moved to the floor for consideration since its introduction earlier this year. It is the Foundation’s hope that the Administration’s efforts will put pressure on Congress to take action on that pending legislation.
Cutaneous Lymphoma Foundation advocates can also help by contacting their members of Congress to urge their support of the Preserving Access to Life-Saving Medications Act now. Please call the Senate switchboard at (202) 224-3121 and ask for your senator by name to urge them to support the Preserving Access to Life-Saving Medications Act or write to your Senator using a pre-drafted letter that you can download here.
Patients battling cancer like cutaneous lymphoma and other chronic diseases are increasingly facing yet another obstacle in the fight against their disease – drug shortages. A shortage of a drug used primarily to treat leukemia and lymphoma, cytarabine, has called national media attention to this problem garnering articles in the Wall Street Journal, Bloomberg News and an opinion piece in the Washington Post.
To address this issue, Sens. Amy Klobuchar (D-MN) and Robert Casey, Jr. (D-PA) have introduced the Preserving Access to Life-Saving Medications Act (S.296). The bill provides the Food and Drug Administration (FDA) with a warning system in the form of a notification of a discontinuation or prolonged interruption of a medication’s production. The advanced warning system will aid the FDA in better dealing with impending prescription drug shortages.
For patients fighting cancer and other chronic diseases, access to the proper medication is truly a life and death matter. Please call the Senate switchboard at (202) 224-3121 and ask for your senator by name to urge them to support the Preserving Access to Life-Saving Medications Act or write to your Senator using a pre-drafted letter that you can download here.
Your help is needed to save funding for medical research. Funding for the Department of Defense’s (DoD) medical research programs is under attack as the funding is being deemed by some as “non-defense-related medical research.” Currently, a portion of that funding is used to conduct blood cancer research projects. For those members of our military who contracted a blood cancer due to their service of our country, this medical research is certainly defense-related.
For example, the Institute of Medicine and the U.S. Department of Veterans Affairs have determined that exposure to chemical and biological agents during World War II, Vietnam and the two Gulf Wars are associated with blood cancers. This makes the DoD a logical home for a blood cancer research program.
In order to protect this research funding and support our military personnel and veterans who have contracted blood cancers, we need you to contact your senators today! Please call the Senate switchboard at (202) 224-3121 and ask for your senator by name or write to your Senator using a pre-drafted letter that you can download here.