HFA Hosts 9th Annual Patient Fly-In

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HFA hosted our 9th Annual Patient Fly-In in Washington, D.C. alongside an online Virtual Week of Advocacy from September 17 – 20.

Advocates asked members of the House to support HR 5801, HELP Copays Act, introduced to protect vulnerable patients by reining in harmful health plan pricing schemes such as copay accumulator adjusters. This bipartisan legislation would require health plans to count the value of drug copay assistance toward patient cost-sharing requirements. The bill would protect people with bleeding disorders (and other serious health conditions) who face unaffordable cost-sharing for their life-saving medications.

Patient representatives also asked Senators and Representatives to provide a pathway to coverage for over 2 million low-income Americans who live in Medicaid non-expansion states. These individuals are ineligible for Medicaid but earn too little to qualify for premium tax credits that help with the purchase of ACA insurance, and therefore have no avenue to obtain health insurance. Low-income individuals living with bleeding disorders are at great risk if they lack health coverage.

As part of HFA’s Patient Fly-In and Virtual Week of Advocacy:

  • 20 community members from 10 different states had meetings with 35 members of Congress and their staffs.
  • Over 150 community members around the country participated in our online Virtual Week of Advocacy and sent letters to their members of Congress.
  • Over 50 people attended our Capitol Hill reception.
  • HFA honored two Bleeding Disorders Champions during our Congressional Reception for their support of policies important to people with bleeding disorders.:

Rep. Abigail Spanberger. From the Congresswoman’s very first days in office in 2019, Rep. Spanberger has been an ally and a champion of the bleeding disorders community. Over that period, she has consistently defended the Affordable Care Act and its crucial patient protections that preserve access to care and coverage for people with pre-existing conditions. Most recently, her vote to extend enhanced premium subsidies for Marketplace insurance ensures that ACA plan premiums will remain affordable for millions of Americans. Rep. Spanberger has also cosponsored bipartisan legislation important to patients with rare disease, including the HELP Copays and Safe Step Acts, and she has robustly supported the federal 340B drug discount program, which helps provide critical funding for nearly three-quarters of hemophilia treatment centers nationwide.

Rep. Brian Fitzpatrick. Since taking office in 2017, Rep. Fitzpatrick has consistently been willing to work across the aisle, especially on issues relating to access to health care. HFA particularly appreciates the Congressman’s co-sponsorship this session of the HELP Copays Act and Safe Step Act, both of which provide critical patient protections against discriminatory health benefit designs that harm persons with bleeding disorders and other high-cost conditions. The Congressman has also co-sponsored at least eight other bills that would make health plans affordable for families, ensure more equitable treatment of underserved or disadvantaged populations, or provide greater funding for mental and behavioral health.