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.

Action Alert: Stop Medicare from Getting Between Patients and Their Doctors!

The voice of the cutaneous lymphoma community and other patient stakeholders will be essential in urging Congress to stop Medicare from setting up a new reimbursement model that could significantly undermine the ability of patients and doctors to choose the most appropriate treatment method.

Click here to learn how you can help!

Medicare's Flawed Part B Drug Experiment Could Harm Patients - Editorial

April 2016 - Editorial by Rose Gerber concerning patients' need for flexibilty to change treatments when appropriate and how that flexibility is at risk.

Click here to read Ms. Gerber's article published on the Morning Consult (

Rose Gerber is the director of patient advocacy and education at the Community Oncology Alliance (COA) and leads the COA Patient Advocacy Network (CPAN), a national network representing all members of the cancer community and advocating for access to local, affordable cancer care.

FDA Regulation on Laboratory Developed Tests (LDTs)

April 2016 - The Cutaneous Lymphoma Foundation joined with other stakeholders to send letters to the Chairs and Ranking Members in the House and Senate on both Appropriations Committees and Agriculture/FDA Subcommittees encouraging them to support FDA regulations of LDTs.

FDA involvement in LDTs is important because:

  • The FDA has track record of exercising regulatory flexibility to bring new technologies to patients in a timely manner; and
  • The FDA can effectively fill current gaps in oversight that have led to uncertainty surround the quality of some tests

Click here to read the letter to the House Members.

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.

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