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.

AACR Strongly Opposes the Draconian Cuts to Medical Research Proposed in President Trump’s FY 2018 Budget (Press Release)

March 2017 - On behalf of the entire cancer research community, the American Association for Cancer Research (AACR) was shocked to learn that the Trump administration is proposing to cut $5.8 billion from the National Institutes of Health (NIH) budget in fiscal year (FY) 2018.  At a time when extraordinary progress is being made against cancer and many other diseases, these draconian cuts would set research back for decades and also threaten the careers of an entire generation of young investigators working in labs and clinics all over the country who are committed to improving public health and saving lives. 

Therefore, we call on members of Congress to stand firmly against this budget proposal. We urge them to maintain the momentum they initiated in FY 2016 when they provided the NIH with a $2 billion funding increase so as to ensure that medical research remains a national priority. Providing robust, sustained, and predictable annual funding increases for the NIH is absolutely required for the benefit of cancer patients nationwide. Since today’s budget proposal by the Trump administration will severely jeopardize the progress we are making in preventing, treating, and curing cancer, the proposal must be stopped in its tracks.

The Cutaneous Lymphoma Foundation encourages the cutaneous lymphoma community to let their elected officials hear how these changes may impact them. To identify your officials, visit

NORD Issues Statement as House Committees Review the American Health Care Act

March 2017 - The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in advance of today’s hearings on the American Health Care Act:

“Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement package called the American Health Care Act (AHCA). This bill aims to repeal many ACA provisions through budgetary reconciliation, and replace them with alternative provisions.

On behalf of our over 260 member patient organizations, NORD put forward a set of ‘Principles for Health Coverage Reform‘ to which Congress and the Administration should adhere in order to avoid harming rare disease patients in their repeal and replace efforts.

After comparing the AHCA to our principles, we find that several key patient protections are maintained, but changes to the private insurance market and Medicaid program may jeopardize access to affordable, quality health care for rare disease patients. We look forward to working together with Congress to resolve these potential patient access issues.

Read the full statement

Let Your Voice Be Heard on the Affordable Care Act!

February 2017 - Congress will soon be in recess and traveling back to their respective home towns and most congressional members will be hosting open or ticketed Town Hall meetings to connect and meet with their constituents. This is a great opportunity to let your members know that a strong health care system is essential and that repealing the Affordable Care Act without a strong replacement will harm people who live with or have a history of cancer.

This is your time to tell your members of Congress not to repeal the Patient Protections in the Affordable Care Act.

To protect people who live with or have a history of cancer, any proposed replacement to the Affordable Care Act needs to:

  • Provide patient protections (i.e. do not penalize individuals with preexisting conditions, maintain bans on annual lifetime benefit caps)
  • Provide comprehensive and meaningful coverage (i.e. essential benefits)
  • Create a viable insurance market that does not penalize patients
  • Provide affordable coverage
  • Maintain strong safety net programs (i.e. Medicaid)
  • Provide equitable coverage (regardless of location and income levels)
  • Maintain federal oversight

Click HERE to find a Town Hall event in your state and voice your opinion that your Patient Rights are essential in keeping affordable health care!

Information provided by the Cancer Policy Institute of the Cancer Support Community

What's What Your State's Grade on Rare Diseases Policy? NORD Releases 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.

NORD Policy Update: The Affordable Care Act

February 2017 - The National Organization for Rare Disorders (NORD) shared an update on its position on the Affordable Care Act during its February Membership meeting.

Policy UpdatesPaul Melmeyer, Associate Director of Public Policy, NORD

Defending Coverage Protections for Rare Disease Patients:
Key protections included in the Affordable Care Act:
- Prohibition on discriminating against individuals with pre-existing conditions
  1. Guaranteed issue of health insurance regardless of health status
  2. Baseline level of assured benefits
  3. Community rating: Insurers must charge the same premium to everyone within the plan regardless of health status (with age and tobacco use as the only exceptions).
- Prohibition on the use of annual and lifetime caps
- Medicaid expansion and financing - While Medicaid financing was not directly addressed in the ACA, changing the federal financing mechanism for Medicaid is being discussed as part of the ACA replacement plan.

There are other important provisions of ACA that we will work to defend, including:
- Closing of the Medicare Part D donut hole
- Allowing individuals up to age 26 to stay on their parents’ plan

Current replacement plans being discussed include:
- Replacing the individual mandate with continuous coverage requirements
  a. A continuous coverage requirement would expose individuals to costlier, less generous insurance.
  b. Thus they are incentivized to be insured and stay insured similar to the individual mandate.
  c. NORD is currently evaluating this proposal
- Keeping guaranteed issue and benefit floors for individuals with pre-existing conditions
  a. No mention of community rating yet, but House republicans promise a new bill with community rating intact.
- High risk pools to coverage individuals with pre-existing conditions who fell out of the insurance market.

NORD advocacy on protecting our patients’ coverage:
- Share your story! Follow this link:
- Developing position papers on these important facets of the ACA
- Conducting meetings on the Hill with Committee and leadership staff
- We will soon be sending advocacy alert opportunities to you to share with your communities
- We will circulate coalition letters for sign-on
- We will be training advocates during Rare Disease Week on the Hill to advocate for ACA protections.

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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