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On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially catastrophic costs of chronic illness; maintain robust safety net coverage for those who cannot afford private insurance; keep coverage for children up to 26 years old; and oppose underfunded high risk pools.

HFA also asked members of the House to support HR 2077, the “Restoring the Patient’s Voice Act of 2017.” This bill protects patients on employer or self-funded insurance plans from potentially harmful step therapy protocols. Step therapy is a cost cutting strategy employed by insurance companies that requires patients to take a medication, usually a less expensive product, first and “fail” on that product before covering another, potentially more expensive therapy.

As part of our Patient Fly-In and Virtual Hill Day, we had:

  • 18 community members from 10 different states had meetings with 22 members of Congress and their staff
  • Over 50 Community members around the country participated in our online Virtual Hill Day and sent letters to their members of Congress
  • Over 100 people attended our Capitol Hill reception
  • 2 Champion Awards were given during our Capitol Hill Reception to:
    • Congressman Joe Crowley (NY) for his attentiveness to the issue of health care, particularly for those with rare disease
    • Congressman Ryan Costello (PA) for his recognition of the importance for the protection of coverage for those with pre-existing conditions

We also hosted a Congressional Reception to honor members of Congress that have done extraordinary work for those with chronic and expensive disease. Each of our honorees received our Champion Award. Whether it be for their work with the ensuring accessible healthcare coverage or working to reduce barriers to care, we are pleased to honor these lawmakers.

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Rep. Joe Crowley. A lifelong New Yorker, Rep. Crowley has served the NY 14thdistrict – spanning parts of the Bronx and Queens – since 1998. Before his election to Congress, Rep. Crowley helped operate a family-owned business and represented the 30th Assembly District in the New York State legislature.

Rep. Crowley’s efforts in Congress have focused on building strong communities, creating jobs, protecting seniors, promoting educational opportunities, and – most relevant to today – increasing access to health care. A member of the House Committee on Ways and Means, Rep. Crowley has worked to make insurance available and affordable to all, and has fought to defend the insurance protections contained in the ACA. Rep. Crowley is also the founder and a past co-chair of the Rare Disease Congressional Caucus. On April 17ththis year, Rep. Crowley spoke movingly in recognition of World Hemophilia Day and the importance of renewing our commitment to working for accessible, affordable treatment for all people living with bleeding disorders. Today HFA recognizes Rep. Crowley for his efforts on behalf of the bleeding disorders community and the larger rare disease community.

Rep. Ryan Costello. Since 2014, Rep. Costello has represented the 6thDistrict of Pennsylvania in Congress, where he serves on the House Energy and Commerce Committee. Born and raised in Chester County, PA, Rep. Costello worked as an attorney and served on township and county boards prior to his election to Congress.

Rep. Costello has made health care a focus during his years in Congress. A member of the Rare Disease Caucus, Rep. Costello has advocated for more funding for medical research generally and for the study of rare diseases in particular. He defended the National Institutes of Health against proposed budget cuts in 2017, noting the value of its work and research. He also took a courageous vote against last year’s House ACA repeal bill. At the time, Rep. Costello said the measure didn’t meet his two benchmarks of “protections for those with pre-existing conditions without contingency, and affordable access to coverage for every American.”

This past winter, Rep. Costello sponsored HR 4666, a bill to provide for a Patient and State Stability Fund. This legislation would have provided funding for states to reinsure against the cost of covering high-cost enrollees. While HR 4666 did not move forward, we wanted to recognize Rep. Costello for his leadership in efforts to lower premiums and stabilize the US insurance markets without reducing coverage for vulnerable populations.

 

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