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.

Haystack Project - PROJECT Rare Act

October 2023 - Congressman Dunn (R-FL), Congresswoman Doris Matsui (D-CA) and Reps. Mike Thompson (D-CA), Mike Kelly (R-PA), and Markwayne Mullin (R-OK) introduced the The Providing Realistic Opportunity to Equal and Comparable Treatment for Rare (“PROTECT Rare”) Act, legislation to support patients with rare and ultra-rare diseases in getting evidence-based, medically necessary care covered by their health insurance. The bill permits Medicare and Medicaid to use clinical guidelines and peer-reviewed literature to allow for coverage of rare disease treatments.

Global Dermatology Coalition Launched

May 2022 - The Cutaneous Lymphoma Foundation is proud to announce its participation in a new multi-stakeholder Coalition in #Dermatology! The Global Dermatology Coalition will focus on elevating the healthcare prioritization of dermatological diseases to improve access to diagnosis, care and treatment for patients around the world.

Haystack Project: Access to Rare Indications Act

December 2021: Access to Rare Indications Act of 2021 introduced to Congress

Panel Discussion: Lymphoma Coalition Global Patient Survey Update

October 2020 - The Lymphoma Coalition is one of the Foundation's collaborative partners helping to extend our reach to patients outside of the United States. Coalition leaders Lorna Warwick (CEO) and Natalie Dren (Research Coordinator) joined Susan Thornton for this panel discussion highlighting outcomes from the recent global patient survey. The Lymphoma Coalition launches its Global Patient Survey every two years with the goal of bringing up-to-date patients' life experiences to the medical, research and policy tables.

Relaxing Prior Approvals & Step Therapies for Medicare Advantage & Part D

April 2020 - CMS to encourage Medicare Advantage and Part D plans to relax prior authorization and step therapy standards for medically necessary prescribed or ordered treatments and services during national pandemics.

Medication Access - COVID-19

March 2020 - The Cutaneous Lymphoma Foundation joins other patient advocacy organizations in letter to policy makers regarding access to medicines during the COVID-19 public health crisis.

Rare Disease Week 2020

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. The Cutaneous Lymphoma Foundation represented the cutaneous lymphoma community on the Hill.

RareDERM Forum 2019 Outcomes Report

The two-day RareDERM Forum leveraged the diverse experiences of delegates from around the world for the creation of a formal RareDERM network, which has as its center the creation of a better future for people living with these rare skin diseases. This outcomes document highlights the vision, challenges and proposed roadmap that emerged during the two formative days of presentations, visioning, deliberations and collaboration.

U.S. House Passes Health-Related Appropriations Bills for FY 2020

U.S. House of Representatives passes a package of four appropriations bills, H.R. 2740, which includes increased NIH funding.

Affordable Care Act Resources


The National Coalition for Cancer Survivorship's (NCCS) resource page for policy updates, calls to action and survivor stories related to the Affordable Care Act. As Congress considers repealing and replacing the ACA, the NCCS will provide regular updates about replacement proposals, what they mean for cancer survivors, and how survivors and advocates can make their voices heard in this debate.

NORD Rare Disease State Report Card

The National Organization for Rare Disorders' (NORD) State Report Card serves as an evaluation of state policies pertinent to the rare disease community. With it, NORD hopes to provide a road map to the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy.

Learn more about how your state rates on the key issues of medical foods, newborn screening, prescription drug cost sharing, medicaid/CHIP eligibility, biosimilars, step thearpy and rare disease councils.

FDA Patient Network

With their 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's 90-second video to explain why.