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.

AARP Report on Health Care Costs and Impact of Medical Expense Deduction

In 2013, roughly 25.8 million traditional Medicare beneficiaries spent at least 10 percent of their income on out-of-pocket health care expenses. AARP shared the results of their study in a factsheet. The factsheet presents some of the key socio-economic and health characteristics of Medicare beneficiaries who bear such a high health care cost burden and for whom the medical expense tax deduction is critical.

Affordable Care Act Resources

#ProtectOurCare

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.

340B Leadership Summit

More than 75 stakeholders, including recipients of Health Resources and Services Administration (HRSA) grants, patient advocates, health experts, clinicians, academic organizations, hospitals and health systems, and the biopharmaceutical industry, convened in Washington, DC, for the fourth annual National Leadership Summit on 340B.

The Alliance for Integrity and Reform of 340B (AIR340B) is a coalition of patient advocacy groups, clinical care providers and biopharmaceutical innovators dedicated to strengthening and sustaining the 340B program to ensure it directly supports access to outpatient prescription medicines for uninsured indigent patients.

NORD Rare Disease State Report Card

February 2017 - 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.

Advocacy

Advocacy is the act of educating, supporting and recommending an action. At the Cutaneous Lymphoma Foundation, we advocate on behalf of people affected by cutaneous lymphomas to affect positive change on many important fronts.