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.

Advocacy Opportunities: 2 Call-to-Actions

Call to Action 1: Precision Medicine Initiative

President Obama’s Precision Medicine Initiative is a bold new enterprise that promises to transform medicine and the way we prevent and treat diseases to improve people's health. Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment and lifestyle for each person. While precision medicine is currently being used for select cancers, it is not the norm. The purpose of the Initiative is to change that and make the concept of precision medicine the approach of every day clinical practice.

We encourage you to visit the NIH’s website to learn more about the Precision Medicine Initiative:

Be sure to check out the infographic which provides a "snapshot" of the Initiative and its goals:

This initiative is further noted in NIH Director Dr. Francis Collin’s presentation on the NIH FY 2016 budget. To access the slides from his presentation, please visit:

Given the individualized nature of cutaneous lymphoma, the personalized approach of precision medicine could have a significant impact on its treatment and, perhaps, cure. We encourage you to contact your elected officials and urge them to support the Precision Medicine Initiative.
Below is recommended text:

  Dear ________:
As a person who has been personally affected by cutaneous lymphoma, a rare form of non-Hodgkin's lymphoma, I am aware that "one-size-fits-all" treatments don't always "fit."  Cutaneous lymphoma affects each each individual living with the diagnosis differently...what works for one person, may not work for another. The precision medicine model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients and less trial and error.
On behalf of all those living with cutaneous lymphoma I ask for your commitment to support President Obama's Precision Care Initiative .
Thank you for your consideration.

To identify and contact your elected officials, please visit:
Call to Action 2: NIH Funding
Federally-funded research plays an important role in many medical advances made in lymphoma. The National Cancer Institute (NCI) has programs which are moving results from the laboratory to the clinical setting. For example, researchers are evaluating novel lymphoma therapies, studying lymphoma biology and epidemiology, and identifying lymphoma biomarkers. A cure for lymphoma can only be realized through advanced cancer research.
The National Institutes of Health, including NCI, have played a crucial role in such medical breakthroughs. Despite its enormous value, the United States’ support for medical research has continued to decline in the past decade and has put our nation’s position as the world leader in research and development at risk.
Please take a minute to send an email message to your senators and representative, urging them to increase investment in federally funded research and recommit our nation’s support for medical discovery.
Below is recommended text:

  Subject:  Increase Investment in Federally Funded Medical Research
Dear ________:
As a person who has been personally affected by lymphoma, I understand the importance and potentially lifesaving role that scientific discovery can play for the future.  I ask for your commitment to vital medical research so that new treatments and a cure can be discovered for those living with lymphoma today, and all of those who will be diagnosed in the future.
Recent decisions by Congress to keep federally funded research stagnant have put progress in medical innovation and scientific discovery at risk.  As you prepare your funding request for Fiscal Year 2016, please include a request of at least $32 billion for the National Institutes of Health (NIH), including $5.26 billion for the National Cancer Institute (NCI).
Thank you for your consideration.

To identify and contact your elected officials, please visit:

Keeping Cancer Care Accessible

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.

CLF Partipates in AAD's Lobby Day 2014

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:

  • Medicare Advantage is a health insurance alternative to traditional Medicare (Part A & B).  In 2014 15.7 million patients, representing 30% of Medicare recipients, were enrolled in Medicare Advantage.
  • Across the nation, thousands of dermatologists and other specialists are being dropped from Medicare Advantage provider networks to the detriment of patients, particularly those most in need of medical care and rare diseases.
  • Dermatologists in at least 17 states have been dropped without cause from at least two Medicare Advantage network plans.  These actions threaten patient access and fail to meet the network adequacy standards of the Medicare Advantage program.

Medical Research Funding:
Increase funding for medical research to find cures and treatments for life-threatening and debilitating skin conditions and diseases.

  • At any given time, 1 in 3 Americans suffers from a skin disease.  Some of these are chronic, inflammatory, multi-system, disabling and life-threatening conditions.
  • Advocating for the following funding levels in the Fiscal Year 2015 appropriations bills:
  • $32 billion for the National Institutes of Health
  • $5.26 billion for the National Cancer Institute
  • $5 million for the Centers for Disease Control’s Skin Cancer Prevention Program
  • $520 million for NIAMS
  • Under the current budget, the NIH was cut by $1.03 billion and funding for research on cancer and other diseases is scheduled to face another round of cuts in FY16 and beyond - even as the incidence of cancer is expected to grow as the US population ages.

Skin Cancer Prevention:

  • Promote prevention, raise awareness and support innovation.
  • One American dies of melanoma every hour and 1 in 5 Americans will develop skin cancer in their lifetime.
  • This nation has seen an alarming increase in melanoma incidences in young people . It is the most common form of cancer for young women 25-29 years old and the second most common cancer for young adults 15-29 years old.
  • According to The Surgeon General’s Call to Action to Prevent Skin Cancer, every year 5 million Americans are treated for skin cancer at a cost of $8.1 billion.
  • Research indicates that the risk for developing melanoma increases by 75% in individuals who have been exposed to UV radiation from indoor tanning devices and the risks increase with each subsequent use.

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.

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.