Advocacy News

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.

CLF Joins Biologics Efforts to Ensure the FDA takes a Patient Centered Approach as it Develops Biosimilar Policy

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.

Cutaneous Lymphoma Foundation and Lymphoma Research Foundation Collaborate for Lymphoma Education and Advocacy Partners Program

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.

One Voice Against Cancer - 2014

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:

Download One Voice Against Cancer Fact Sheets:

Cancer Prevention Programming

Cancer Research

FDA Funding

Nursing Programs

Recent Appropriation Letters from OVAC:

House Appropriations Committee

Senate Appropriations Committee

CLF Signs REAP Comment Letter on Proposed Medicare Changes

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.

"Friends of Cancer Research" Letter of Support of FDA Program

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.

2014 Rare Disease Day - February 28, 2014

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

To read how Rare Disease Day is being observed worldwide, visit

Want to get involved?

  • Do you live in the Jacksonville, Florida area and want to participate in a Rare Disease Day event? Cynthia Gist, mother of a son with CTCL, will be hosting the 2nd Annual Rare Disease Day from 11 am to 1 pm on February 28, 2014 in the Promenade section of the Jacksonville Public Library.
  • Join NORD and ABC news for a Rare Disease Day tweetchat. NORD will be co-sponsoring a tweetchat on the topic of "Conquering Rare Diseases" with ABC News' Dr. Richard Besser, Chief of the ABC News Medical/Health Unit, on Tuesday, Feb. 25, at 1:00 p.m. ET.  Click here to read more.

One Voice Against Cancer Fact Sheets

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.

Help FDA Help Patients Have A Bigger Voice: The New Patient Network Website

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!

Advocacy - Why Are You Asked To Take Action So Many Times?

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.