Please note the important advocacy news items below that are of high priority to the cutaneous lymphoma community. We encourage you to learn more about these issues and how, together, we can affect positive change and grow support for the issues that are most important to people affected by cutaneous lymphoma.
The current trend of closing and/or merging local cancer clinics with larger facilities is affecting patients' access to affordable care, the cost of care for seniors and the sustainability of Medicare Part B Program. Michigan Senator Debbie Stabenow recently wrote a letter to U.S. Senate Majority Leader Harry Reid requesting that these issues be addressed in the next available legislative vehicle.
The Patient Access to Care (PACT) Coalition wrote a letter thanking Senator Stabenow for advancing legislature to ensure community-based care for cancer patients remains available. As a member of PACT, the Cutaneous Lymphoma Foundation also signed the letter.
Click here to read Senator Stabenow's letter and the PACT's response.
Dr. Suzanne Delbanco wrote an opinion peice for the Wall Street Journal on how these mergers drive up the cost of care. Dr. Delbanco is the executive director of Catalyst for Payment Reform, an independent, nonprofit corporation working on behalf of large employers and other health care purchasers to catalyze improvements in how we pay for health services and promote higher-value care in the U.S.. Click here to read Dr. Delbanco's article.
September 2014 - This year's American Academy of Dermatology legislative conference was one of the largest in recent history. The participants included 139 dermatologists, residents, patient advocates, and representatives from the Association of Dermatology Managers/Administrators and Dermatology Nurses Association. Together, we met with 189 members of Congress, from 31 states, including 81 meetings with the legislators themselves. Importantly, 75 of the meetings were with legislative ‘targets;’ individuals who sit on Committees of jurisdiction over the most pressing issues to dermatology patients, within the Congressional branch.
The key messages that were presented are as follows:
Patient Access to Care and Network Adequacy:
Medical Research Funding:
Increase funding for medical research to find cures and treatments for life-threatening and debilitating skin conditions and diseases.
Skin Cancer Prevention:
If you are interested in becoming more involved in advocacy initiatives with the CLF, please send an email to indicating your interest. We are in the early stages of developing an advocacy ambassador program and will include you on our list of active advocates.
August 2014 - The Cutaneous Lymphoma Foundation added its name to a letter concerning drug naming from the Alliance for Safe Biologic Medicines (ASBM) to the Honorable Margaret Hamburg, Commissioner of the Food and Drug Administration (FDA).
The letter encourages the FDA to require that companies that produce biosimilar (generic) versions of medications use unique names for their drug, rather than a close derivative of the original. Unique names will provide better clarity when physicians prescribe a drug and less confusion for patients and their pharmacists in filling prescriptions ensuring that the patient receives the medication their physician intended.
Click here to read letter to FDA.
August 2014 - The Cutaneous Lymphoma Foundation (CLF) and the Lymphoma Research Foundation (LRF) are pleased to announce the launch of the Lymphoma Education and Advocacy Partners (LEAP) program. LEAP, convened by LRF, is a coalition of lymphoma-specific patient advocacy organizations focused on public polices and programs that influence the health care and treatment options of people with lymphoma.
Click here to read full press release.
June 2014 - The CLF participated again this year as part of the American Academy of Dermatology contingent in One Voice Against Cancer’s (OVAC) day of action on Capitol Hill. Bringing together 48 coalition organizations along with additional smaller organizations like the CLF who participate as part of the larger groups, OVAC enhanced the cancer community’s chances of securing sufficient funds to support cancer initiatives. By providing a united front on a common theme, OVAC is the leading cancer coalition in Washington, sending a powerful message to legislators.
This year’s theme to legislators is: “Make Funding for Cancer Research and Prevention a Top Priority!”
Recognizing that there are many challenges facing congressional leaders with regard to the federal budget and appropriation of funds, OVAC sent almost 100 individuals to meet individually with their legislators with these three specific requests:
1. Provide $5.26 billion for the National Cancer Institute (NCI).
2. End the decline of cancer’s share of the National Institutes of Health (NIH) budget, by ensuring that any increase for NCI is proportional to the overall increase for the NIH.
3. Support cancer prevention, screening programs and cancer registries in every state by increasing funding for the Centers for Disease Control and Prevention (CDC) cancer programs. Support a FY 2015 budget for the CC Division of Cancer Prevention and Control of $510 million.
Although meeting with legislative leaders and their staff in Washington is an important activity to get the message across, you too can join the effort. As one legislative staff person said, the members listen to the people in their districts and there are many in congress who do not feel that this funding is in fact important because they haven’t heard from them.
You can add your voice to the OVAC message. Call, email or write to your senators and congressmen/woman or set-up a visit with them or their staff at their local office. Take these three requests with you. Let them know that funding cancer research is important to you. Your efforts will make a difference in Washington and ultimately to all of us who continue to live with cutaneous lymphoma. Research is the key to finding new treatments and hopefully one day, a cure.
To learn more about OVAC’s initiatives: http://www.ovaconline.org.
Download One Voice Against Cancer Fact Sheets:
Recent Appropriation Letters from OVAC:
March 2014 - The Regulatory Education and Action for Patient (REAP) Council submitted an official comment letter concerning proposed changes to the Medicare spending. The letter was submitted to Marilyn Tavenner, the administrator of Centers for Medicare and Medicaid Services. The letter covers the following principles: (1) proposals that may impact Medicare beneficiary access to needed drug therapies (both positively or negatively); (2) proposals focused on enhancing quality of care; and (3) proposals focused on enhancing beneficiary and stakeholder understanding of or symplifying the admnistration for the Medicare Part D benefit.
Click here to read the full letter.
March 2014 - The patient advocacy organization, Friends of Cancer Research (FCR), is a leading voice advocating for policies and solutions that will get treatments to patients in the United States in the safest and quickest way possible. FCR, with over 30 over advocacy organizations including the Cutaneous Lymphoma Foundation, recently sent a letter to the US Representative Rosa DeLauro to re-affirm their support of the programs the FDA uses to expedite the development and review of important drugs to address unmet medical needs.
Read the FCR's letter in full here.
The Cutaneous Lymphoma Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2014. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as a global public health concern.
To learn how you can get involved in the United States, visit rarediseaseday.us.
To read how Rare Disease Day is being observed worldwide, visit www.rarediseaseday.org.
Want to get involved?
One Voice Against Cancer (OVAC) is a collaboration of non-profit organizations whose purpose is to advocate as "one voice" on behalf of those affected by cancer to make Congress and the White House aware of issues related to a cancer diagnosis and the need for increased spending for cancer research. Click here to learn more about OVAC's purpose and current stance on cancer research.
Want your voice heard concerning the FDA's regulation of medical products? Visit the FDA's new Patient Network website!
With their new website, the FDA welcomes the unique perspective of patients, family members, caregivers and patient advocates directly affected by serious disease, to the Agency’s decision-making processes. Get involved....your voice counts!
Ever wonder why you may be asked to frequently contact your congressional representative on the same bill? Truth is, Congress can vote on a bill five times before it becomes law. Why five times? And, why is it so important for you to act each time? Watch the American Cancer Society 90-second video to explain it all.