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.

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.

Action Alert for H.R. 1920

May 2017 - On April 6, 2017, Representatives Fred Upton (R-MI), Gene Green (D-TX), John Shimkus (R-IL), Diana DeGette (D-CO), and Pat Tiberi (R-OH) introduced H.R. 1920, a bill that will change Medicare Part B payment structure to preserve community-based health care and protect patients from rising health care costs. Specifically, H.R. 1920 will rectify flawed federal policies by excluding “prompt pay” discounts in Medicare drug price calculations. The exclusion of “prompt pay” discounts will prevent drug prices from increasing further, as providers face cuts to reimbursement that result in an increase in price that is ultimately shifted to patients who need to travel further for more expensive health care. 

H.R. 1920 must pass to secure community-based health care and prevent smaller, rural practices from closing their doors to patients who cannot afford to receive care in a larger hospital setting. Join the Patient Access to Community Treatment (PACT) Coalition and the Cutaneous Lymphoma Foundation in expressing support for this important piece of legislation. Contact your elected officials using the form provided.
Dear [Representative Name]:
I am contacting you today as a constituent concerned about the increasing costs to patients of receiving care in their community and an important federal policy that can help mitigate these costs. 
On April 6th, Representatives Fred Upton (R-MI), Gene Green (D-TX), John Shimkus (R-IL), Diana DeGette (D-CO), and Pat Tiberi (R-OH) introduced H.R. 1920, a bill that will change Medicare Part B payment structure to preserve community-based health care and protect patients from rising health care costs. 
I urge you to support this important piece of legislation for the following reasons: 
1. H.R. 1920 must be passed to protect community treatment centers, and more importantly, the patients who receive care in the community setting. This is a critical opportunity to ensure that physicians are reimbursed appropriately and thus preserve access to community-based care.
2. If you fail to enact H.R. 1920 into law, community treatment centers will face greater pressure to shut their doors to patients or consolidate into more expensive, less convenient health care settings. 
Thank you for your leadership and for protecting access to community health care.
[Your name]
Source: The Patient Access to Community Treatment Coalition (PACT) is an alliance of patient advocacy organizations, provider groups and health care distributors committed to ensuring that patients have access to quality, affordable community-based cancer care.

Senator Bill Cassidy and Congressman Chris Collins Address 340B Leadership Summit

May 2017 - 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, earlier this month for the fourth annual National Leadership Summit on 340B. This year's Summit, organized by the Alliance for Integrity and Reform of 340B (AIR340B), centered on new data on growth in the program and child sites, and featured a provider panel focused on the program's impact on patients. Representative Chris Collins (R-NY) and Senator Bill Cassidy (R-LA) both gave keynote addresses. Alice Valder Curran, a partner at Hogan Lovells, started the day with a 340B primer. Her presentation covered basic issues, such as the timeline of the program's development and growth, compliance issues, and what administrative changes to the program could potentially be expected in the next few years.

The remarks by Representative Collins and Senator Cassidy followed and were one of the many highlights of the day. During his remarks, Representative Collins announced that he is working on a bill to reform many aspects of the 340B program that he is planning to introduce soon. Senator Cassidy opened his remarks with the striking story of his friend, a well-to-do cardiologist, who was considered a 340B patient for a recent hospital visit despite the fact that he isn't vulnerable or uninsured. Senator Cassidy used his story to stress how vague the current guidance is that governs who can be considered a hospital's patient for the purposes of determining which prescriptions are subject to the 340B discount. As a result, Senator Cassidy expressed a desire to make sure that the program benefits patients who truly need help and urged advocates for 340B reform to focus on how the 340B program, as currently structured, does not benefit patients and harms many providers.
Following the keynote addresses, Matt Gallivan, Senator Cassidy's Health Policy Advisor, moderated a panel discussion on new 340B data. Aaron Vandervelde from Berkeley Research Group (BRG) spoke about growth in the program and shared BRG's 340B growth projections through 2021. Kathleen Rowan, a researcher at NORC at the University of Chicago, presented a new study on 340B child sites.  The day concluded with a panel of oncology clinicians, Dr. Barry Brooks and Dr. Warren Fong, who focused on how the 340B program negatively impacts community oncology practices and ultimately patients.
The Summit elicited broad conversation across multiple topics and within multiple stakeholder communities on how best to preserve the 340B program for the people who need it most, while increasing oversight and reforming the program to ensure its long-term sustainability.
Source: AIR Mail is a monthly publication of the Alliance for Integrity and Reform of 340B ("AIR 340B"). The coalition is comprised of public health advocacy organizations, clinical specialty associations and biopharmaceutical innovators. AIR 340B's efforts focus on preserving the long-term sustainability of the 340B Drug Pricing Program in order to benefit underserved, vulnerable patients.
For more information about AIR Mail or AIR 340B, please visit our website at or contact

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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