2017

SIGNED ON

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 

ACTIONS TAKEN & RECOGNITION RECEIVED

 February 2017

2016

SIGNED ON

  • 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

ACTIONS TAKEN & RECOGNITION RECEIVED

  • 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.

2015

SIGNED ON

  • 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

ACTIONS TAKEN & RECOGNITION RECEIVED

  • 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.