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 Supports Nomination of Robert Califf, MD to FDA

The CLF joined with FasterCures to support the nomination of Dr. Robert Califf as the next FDA Commissioner. A total of 70 organizations representing dozens of diseases and millions of Americans have signed FasterCures' letter recommending his swift nomination. Dr. Califf is a world expert and leader in clinical trials and founded the world's largest academic clinical research organization, Duke Clinical Research Institute.

FasterCures, a center of the Milken Institute, is an action tank driven by a singular goal—to save lives by speeding up and proving the medical research system.

Click here to read FasterCures letter of support of Dr. Califf's nomination.

CLF Participates in Patient Driven Health Roundtable

Susan Thornton, CEO of CLF traveled to Washington, DC in June 2015 to participate with other patient advocacy leaders in a roundtable discussion held by the Partnership to Improve Patient Care (PIPC) and the Patient Support Community (PSC). The intention of the roundtable was to "discuss outcomes that matter to oncology patients and policies that would support high-quality, patient-driven cancer care." Susan provided perspectives from the cutaneous lymphoma community.

Growing out of roundtable discussion, was a recommendations document which will be sent to key health care policymakers. Click here to learn more about the Roundtable and to read the meeting summary and recommendations.

2015 AADA Legislative Conference - Highlights and Calls to Action

Click here to learn more about the American Academy of Dermatology Association's "asks" for 2015 and how you can add your voice for change in accessibility to physicians and treatment.

NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act

September 2015—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the approval of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives.

The House of Representatives echoed the U.S. Senate and showed its commitment to 1 in 10 Americans and their families by passing the Ensuring Access to Clinical Trials Act (S.139).  By passing S. 139, the House voted to remove income-related barriers to participation in clinical trials and toward developing much-needed treatments for the 7,000 known rare diseases, only a few hundred of which currently have FDA-approved treatments.

Today, 30 million people and their families have added hope that their tremendous unmet medical needs are one step closer to being addressed. Studying one rare disease can often lead to understanding of other rare diseases, as well as understanding of more common diseases.

As the Ensuring Access to Clinical Trials Act moves to the President’s desk, we close in on eliminating the challenges of rare diseases and to stopping them from altering and ending the lives of too many Americans much too soon.  NORD is proud to have supported this bill and to have advocated for its passage with the Cystic Fibrosis Foundation, Muscular Dystrophy Association, and many others in the rare disease community.

Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

Read more about the Ensuring Access to Clinical Trials Act here.

Cancer Innovation Coalition Letter to ASCO

August 2015 - The Cutaneous Lymphoma Foundation was invited by the Cancer Innovation Coalition to sign their letter to the ASCO Value in Cancer Care Task Force. The focus of the letter is that patient need define value. It requests that ASCO add to their Value Framework's core criteria the provision of patient-centered care as defined by the Institute of Medicine in 2001 as " providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions."

The letter also addresses patient costs and  recommends that  "patients will be better served if the ASCO framework incorporates the range of costs a patient is likely to experience as part of a personalized decision support framework intended to help patients make more fully informed decisions."

Click here to read the letter in full.

National Patient Advocate Foundaton Publishes White Paper on Clinical Pathways

July 2015 - The National Patient Foundation (NPAF) has published "Clinical Pathways: barrier or benefit to patient access and personalized medicine?" as a white paper. A "white paper" is a document that describes a given problem and proposes a specific solution to the problem. 

The NPAF's paper describes Clinical Guidelines and Clinical Pathways and how they are related. It also explains how Clinical Pathways are evolving and explores the concerns on how they may affect patient access to personalized medicine.

Click here to read the NPAF's white paper in full.

U.S. House APPROVES 21st Century Cures Act

July 2015 - The U.S. House of Representatives approved H.R. 6, the 21st Century Cures Act, by a vote of 344-77 on July 10, 2015. According to the Energy & Commerce Committee press release, this "nonpartisan legislation will help to bring the (U.S.) health care system into the 21st Century, investing in science and medical innovation, incorporating the patient perspective, and modernizing clinical trials, to deliver better, faster cures to more patients and loved ones in need."

The Cures Act will now move on to the Senate for Approval.

To learn more about the 21st Century Cures Act, visit the Energy & Commerce Committe's  21st Century Cures: What You Need to Know

Related news...

21st Century Cures (H.R. 6) bill passes in House by vote of 344-77

Washington, D.C. – July 10, 2015 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s approval by the House of the 21st Century Cures legislative initiative.

Today’s passage in the House of the 21st Century Cures (H.R. 6) bill is a huge win for the rare disease community, which actively supported the legislation.  By promising mandatory funding for the NIH, strengthening the FDA’s ability to streamline the clinical trials process, and further incentivizing the development of orphan products, 21st Century Cures will help pave the way for developing new cures and treatments, thereby closing the gap for the vast majority of the 7,000 rare diseases that currently have no approved treatment.  The legislation positions the U.S. to be the continued international leader in medical product innovation.

NORD congratulates the House, Energy & Commerce Committee and the other groups who worked to help this initiative pass. Today’s vote underscores the bipartisan commitment to move this legislation through the House and we hope the same spirit of collaboration leads to prompt development of similar legislation for consideration by the Senate.

Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

21st Century Cures: What You Need to Know

21st Century Cures: What You Need to Know

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.

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.