January 2020 –

  • Signed on to a letter that would support the requirement that taxpayer-funded research be made available immediately and freely – finally eliminating the current 12-month waiting period for the public to gain access to the outputs of scientific research, including data and articles.
  • Signed on to a letter to Congress urging them to enact policies that would help
    ensure prompt and equitable access to transformative, potentially curative treatments, such as gene therapy.
  • The IPPF signed on to a letter to express our support for HR 1379, the Ensuring Lasting Smiles Act (ELSA). This bill was part of the Health, Employment, Labor, and Pensions Subcommittee’s Jan. 28 hearing; “Expecting More: Addressing America’s Maternal and Infant Health Crisis”.
  • Signed on to letter to HHS Secretary Alex Azar to act immediately to restart the activities of the ACHDNC so it can continue its critically important work to improve newborn screening and save babies’ lives.

February  2020 – 

  • Signed onto letter to the Center for Medicare Services (CMS) opposing the proposed rule that would expressly allow insurance plans to exclude drug manufacturer copay assistance from counting towards patients’ annual limitation on cost sharing.

March  2020 –

  • Letter sent to Congress and the Administration to take action to address the following issues during the Coronavirus (Covid-19) pandemic :
    • Require all payers to allow for provision of an emergency supply of medications and supplies by relaxing restrictions on timing of refills and amounts, to at least the CDC-recommended extra 30-day supply and up to a 90-day supply to reduce returns to the pharmacy; Ensure that these protections extend to medications that are controlled substances indicated for and used to treat epilepsy, mental illnesses, cancer and other serious medical conditions, as well as injectables; Require all payers to waive prior authorization and utilization management requirements; Require flexibility regarding use of mail order pharmacies, including out of state mail order pharmacies; and other home delivery methods; Require payers to relax requirements for in-person visits for refills, including allowing visits through tele-health; Require all payers to establish policies to assist patients with cost-sharing related to their emergency supply or allow for delayed payment of out-of-pocket costs for emergency supplies; Increase FDA monitoring and reporting of shortages to ensure consistent supply, especially existing medications approved to treat chronic conditions that may be under study or used to treat COVID-19.
  • Help draft a letter to the Trump Administration, requesting that he not take any action that would destabilize the health care supply chain during the Covid-19 crisis.

April  2020 –

  • Sent letter urging Congress to expand eligibility for the paid family and medical leave program to include individuals determined by the Centers for Disease Control and Prevention (CDC) to be at high risk for adverse complications from COVID-19 and working members of their households.
  • Signed on to a letter asking HHS to support policies that incorporate the needs of rare disease patients and others with complex and chronic conditions who require regular access to medical care—including surgical, other in-person procedures and physician-administered therapies such as infusions and injections in the clinic or home setting—receive uninterrupted treatment.
  • Sent letter to 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.

May  2020 –

  • Sent letter encouraging Congress to provide at least $2 billion in bridge funding to assure the stalled research supported by non-profit organizations, voluntary health associations, science societies, and foundations can resume once researchers return to their labs.
  • Sent letter to the Institute for Clinical and Economic Review (ICER) to offer to partner with their work in patient-centered outcomes research and the implementation of patient engagement strategies in other organizations.
  • Sent letter to the Centers for Medicare and Medicaid Services (CMS) Center for Medicare and Medicaid Innovation (Innovation Center) expressing our strong support for a mechanism that would make critical medications more affordable by allowing the total annual out-of-pocket costs for Medicare Part D beneficiaries to be distributed more evenly throughout a benefit year.
  • Signed comment letter recommending additional steps we believe CMS should pursue to help facilitate clinically appropriate care for all patients during the COVID–19 PHE, including those with autoimmune diseases.
  • Signed letter to key members of Congress and the Executive branch, asking them to fight for nonprofits by supporting the Nonprofits Property Protection Act and to stay strong for us against insurance industry special interests.




January 2019 –

  • Signed on to AARDA’s comment letter responding to the Medicare Advantage and Part D proposed rule.

February 2019 –

  • Signed on to a letter of support for the Ensuring Lasting Smiles Act (ELSA). This link provides an overview for you about the efforts regarding the Ensuring Lasting Smiles Acthttps://www.nfed.org/get-involved/advocate/ensuring-lasting-smiles-act/
  • Sign-on to draft comments by I Am Essential for the proposed 2020 Notice of Benefit and Payment Parameter. The letter outlines the impact the proposed changes would have on patient access to and affordability of prescription drugs.

March 2019 – 

  • Signed on to a letter with AARDA  recommending that Congress allocate $8.0 million in fiscal year 2020 for a stand-alone, dedicated autoimmune disease program in the Department of Defense Congressionally Medical research Program (DoD CDMRP). The CDMRP is located in the US Army Medical Research and Materiel Command to support peer-reviewed medical research programs (PRMRP) to identify and select military health-related research of exceptional scientific merit across 50 or so priority topic areas, including arthritis, diabetes, epilepsy, inflammatory bowel disease, lupus, multiple sclerosis, scleroderma, and other autoimmune diseases.

May 2019 –

  • Signed a letter in support of Medicare coverage for medically-necessary oral/dental health therapies along with 92 other signatories sponsored by International & American Associations for Dental Research.
  • Requested Congressional support for the critical and highly successful defense health research
    programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at
    the Department of Defense (DoD).

July 2019 –

  • Sent to Chairman Grassley, Ranking Member Wyden, Leader McConnell, Minority Leader Schumer, and the entire Senate Finance Committee a letter Urging senate leadership to maintain Medicare Part B protections.
  • Sent letter to Administrator Seema Verma at the Center for Medicare and Medicaid Services U.S. Department of Health and Human Services, regarding our concern for beneficiaries’ barriers to accessing off-label treatments in Medicare Part D.

August 2019 –

  • Submitted comment letter regarding  the administration’s proposed rule that would dramatically change the regulations that implement Section 1557, the anti-discrimination provision of the Affordable Care Act. The letter focuses on the impact of the proposed changes that impact benefits design and access to care and treatment for people with serious, chronic health care conditions.

September 2019 –

  •  The IPPF joined 17 organizations as part of the American Academy of Dermatology (AAD) Drug Pricing Task Force signed on to the biosimilars principles document that supports common
    principles around increasing uptake of biosimilar biological products.

October 2019 – 

  • Sign-on letter to the leadership of the Senate Finance Committee and the leadership of the House Energy and Commerce Committee and the House Ways and Means expressing our continued support for a long-term re-authorization of PCORI,  and as they negotiate a health extenders package.
  • Submitted comments to the Institute for Clinical and Economic Review’s (ICER’s) proposed changes to the ICER Value Framework for 2020.

November 2019 –

  • Signed a letter of support for the swift confirmation of Dr. Hahn as FDA Commissioner.

December 2019 – 

  • Signed on to a letter to Senators Jones, Collins, Menendez, and McSally thanking them for introducing the Senate version of the “Ending the Diagnostic Odyssey Act.”
  • Signed on to letter to to Representatives Diana DeGette and Fred Upton providing input as Congress considers legislation to build upon the success of the 21st Century Cures Act by facilitating a modernized system of developing new cures combined with a health care system that delivers coverage and access.
  • Signed on to letter to Speaker Pelosi, Majority Leader McConnell, Minority Leader McCarthy, and
    Minority Leader Schumer urging them to complete final negotiations on the fiscal year
    2020 Defense Appropriations Act and move the bill expeditiously through the House
    and Senate toward enactment. Legislation will prevent delay to Defense Health Research Programs, including the Congressionally Directed Medical Research Programs, at the Department of Defense




February 2018 –

  • The IPPF sent a letter to Medicaid Directors across the country emphasizing the importance of preserving patient access to orphan therapies in Medicaid.

March 2018 –

  • The IPPF joined the Friends of NIDCR requesting research funding of $38.4 billion for NIH, which includes funds provided to the agency through the 21st Century Cures Act, and $477 million for NIDCR, a 12 percent increase over FY2017 levels.
  • The IPPF sent a letter to Congress expressing our concern with, and opposition to, the latest version of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act.

April 2018 –

  • The IPPF signed on to support the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115), introduced by Congressmen Carson and Costello.
  • The IPPF signed on to a letter to congress to express our concerns about the impact the proposed rule regarding short-term limited duration plans (STLDs) (CMS-9924-P) will have both on the health insurance marketplaces and the individuals we represent. http://www.heart.org/idc/groups/heart-public/@wcm/@adv/documents/downloadable/ucm_500479.pdf
  • Sent letter to the U.S. House of Representatives asking them to amend the Employee Retirement Income Security Act of 1974 to require a group health plan (or health insurance coverage offered in connection with such a plan) to provide an exceptions process for any medication step therapy protocol, and for other purposes (H.R. 2077).

July 2018 –

  • Signed on to a  letter outlines proposals the Administration could take to lower patient cost-sharing since patients with serious and chronic health conditions often shoulder the heaviest cost burden and are faced with high out-of-pocket costs, such as increased premiums, higher deductibles, rising copays and co-insurance. All of which can have an impact on medication abandonment and adherence.

August 2018 –

  • The IPPF signed a letter that we will be sent to appropriators in advance of their conference on fiscal year 2019 appropriations legislation. The letter requests that appropriators fund of the National Institutes of Health (NIH) and the National Institute of Dental and Craniofacial Research (NIDCR) be at a level equal to or higher than the Senate Appropriations Committee marks of $39.1 billion and $462.024 million, respectively.

November 2018 –

  • The IPPF signed onto a letter on behalf of the Part B Access for Seniors and Physicians (ASP) Coalition, which represents a broad cross-section of U.S. health care providers and patient advocacy organizations committed to advancing life-saving innovation in the U.S.





February 2017 –

  • Health Coverage Reform Sign-on Letter to the House Energy and Commerce Committee expressing serious concern about the Preexisting Conditions Protection and Continuous Coverage Incentive Act of 2017. 
  • Sign-on letter with 200 patient organizations to newly confirmed U.S. Department of Health and Human Services (HHS) Secretary Tom Price urging him to maintain and enforce the ACA’s patient protections as he reviews the law and its implementing regulations.
  • Sign-on letter to the Trump Administration about the challenges facing rare disease patients in America and the vital role that federal agencies play in helping to accelerate the research, development, review, and approval of treatments. These agencies must have the ability to hire and retain personnel in order to accomplish their respective missions and to achieve the broader goal of treating and curing diseases.

March 2017 –

  • Sign-on letter in opposition to the new version of this bill – HR 1313 to the House Education and Workforce Committee .  This legislation would fundamentally undermine the privacy provisions in the Genetic Information Nondiscrimination Act (or ‘GINA’), and the Americans with Disabilities Act, allowing workplace wellness programs to require individuals to provide their health and genetic information and that of their families, and to impose severe penalties on those who decline to do so.
  • Sign-on letter to Senate Majority Leader and Speaker of the House expressing grave concern about proposals put forth in the American Health Care Act (AHCA) to alter the fundamental structure and purpose of Medicaid, a vital source of health care for patients with ongoing chronic health needs.

April 2017 –

  • Sign-on letter with The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) are circulating the attached sign-on letter for patient organizations to join us in supporting of timely reauthorization of the Food and Drug Administration’s (FDA) user fee agreements. People with chronic and rare diseases and disabilities rely on FDA to access innovative, safe, and effective treatments.
  • Sign- on letter with the Friends of NIDCR to congressional leadership urging them oppose the Administration’s budget proposals, provide the Senate Appropriations Committee approved allocation of $430.5 million for NIDCR in the final FY17 appropriation bill and our recommended level of $452 million for NIDCR in the FY18 bill.
  • Sign-on letter with The Patient Access to Community Treatment (PACT) Coalition is concerned that the Medicare Payment Advisory Commission’s (MedPAC) proposed recommendations to reduce Medicare payments for Part B medicines could limit patient access to community-based care.

May 2017 –

  • Sign-on form urging Congress to engage in trade negotiations supporting policies that foster medical innovation. Patients need new cures and better treatments.

June 2017 –

  • Sent letter with NORD requesting the establishment of the FDA Office of Patient Affairs to help engage patients more effectively.
  • Joined the Cystic Fibrosis Foundation and other rare disease groups in sending a letter to Senate leadership on the importance of Medicaid to our communities and in opposition to cuts to Medicaid.

July 2017 –

  • We joined 133 organizations in supporting @IAmEssentialCoalition’s response to @HHS’ Request for Information (ROI) on ways to reduce regulatory burdens and improve health care choices to empower patients. http://bit.ly/2uRYbde 

August 2017 –

  • The IPPF joined the National Organization for Rare Disorders (NORD) to express our combined support of the Orphan Drug Tax Credit (ODTC) by sending a letter to Congress.

November 2017 –

  • Signed FDA letter sponsored by the Sjögren’s Syndrome Foundation and the American Autoimmune Related Diseases Association regarding eye health providing expanded access to generic ophthalmic emulsion drug products.
  • The IPPF joined 200 patient organizations in sending this updated letter to Congress in emphatic support of the Orphan Drug Tax Credit.
  • Joined Orphan Drug Credit Coalition along with 34 organizations to advocate preserving the Orphan Drug Tax Credit.
  • Joined Friends of NIDCR sign-on letter to appropriators with our 2018 funding requests for both NIH and NIDCR.


 February 2017



  • January 2016 – Sign on to letters Urge Obama Administration to Enforce ACA Nondiscrimination Provisions; and support of the 21st Century Cures Act (HR 6)
  • March 2016 – Sign on to letter for Newborn Screening
  • April 2016 – Sign on to letter to Senate HELP Committee Chairman Lamar Alexander and Ranking Member Patty Murray in support of their efforts to advance Innovations legislation bolstered by supplemental funding for NIH.
  • October 2016 – Sign on to Rare Pediatric PRV Program as part of 21st Century Cures Act


  • February 2016 – Senior Peer Health Coach Marc Yale and Awareness Program Manager Kate Frantz were joined by 6 P/P patients in Washington DC for Rare Disease Week. In Sacramento, the staff joined other rare disease organizations at the State Capitol, then partnered with NORD for Rare Disease Day with the Sacramento Kings hosting 100 rare disease patients and supporters at an NBA game.



  • January 2015 – Sign on to letter To Bring Treatment to Patients with Rare Diseases
  • February 2015 – Sign on to letter for OPEN ACT
  • May 2015 – Sign On to Show Support for Continuing Incentives for Manufacturers Seeking Pediatric Rare Disease Indications.
  • April 2015 – Sign-on letter supporting H.R. 1078, the SOS Act.
  • March 2015 – Sign-on letter opposing undoing GINA
  • March 2015 – Sign On Letter to Ensure Medicaid patients with rare diseases access to prescribed therapy.
  • April 2015 – Sign-on letter supporting H.R. 1078, the SOS Act.
  • May 2015 – Sign On to Show Support for Continuing Incentives for Manufacturers Seeking Pediatric Rare Disease Indications.
  • June 2015 – Joined National Health Council 21st Century Cures Sign-on Letter
  • July 2015 – Signed on to the letter in support of the $10 billion NIH Innovation Fund, which is included in the 2nd draft of the 21st Century Cures legislation.
  • July 2015 – Joined United for Medical Research and the National Health Council in opposing the Brat amendment that cuts critical NIH funding in the 21st Century Cures Act through Politico ad campaign.
  • October 2015 – IPPF added to Sign-on letter with PPMD to Chairman Alexander and Ranking Member Murray regarding Enhanced Patient Engagement.
  • October 2015 – IPPF added to Sign-on letter with NORD supporting the Advancing Targeted Therapies for Rare Diseases Act (S.2030).
  • November 2015 – IPPF added to sign-on Letter in support of Dr. Robert Califf for the position of commissioner of the Food and Drug Administration


  • May 2015 – Senior Peer Health Coach presented IPPF CEO Will Zrnchik with NORD’s Abbey S. Meyers Leadership Award for outstanding leadership in rare disease advocacy.
  • September 2015 – IPPF members Todd Kuh (PV), Marc Yale (MM), and a fellow patient join the Coalitions of Skin Diseases at the American Academy of Dermatology Association Legislative Day. Collectively, they meed with 8 offices on our P/P communities behalf.