As September ends, HFA continues to closely monitor action on the “Build Back Better” Act. Congressional leaders are trying to pass this legislation, which embodies President Biden’s social infrastructure agenda, via the budget reconciliation process (i.e., a simple majority vote, almost certainly along party lines). The bill, which includes numerous health care proposals, comes with a high price tag of $3.5 trillion, partially offset by drug pricing reforms. Some Democratic lawmakers object to the scope of the legislation, complicating its chances for passage: since Democrats hold the slimmest of majorities in Congress, they cannot afford any defections on the bill. As a result, observers expect the bill to be pared down as debate over the measure continues.

The Build Back Better Act was the focus of virtual legislative “visits” that HFA and grassroots advocates held in September as part of HFA’s Young Adult Advocacy Summit.  YAAS participants advocated for two specific provisions of the “Build Back Better” Act important to people with bleeding disorders:

  • Making permanent the increased subsidies (“advance premium tax credits”) that help Americans buy Marketplace health insurance. Congress boosted the value and scope of the subsidies when it passed the American Rescue Plan on March 11, 2021, but those more generous subsidies last only through 2022. Congress now has an opportunity to make the subsidy enhancements permanent, keeping ACA insurance accessible and affordable for millions of Americans.
  • Providing health coverage to the more than 2.2 million low-income adults who fall into the coverage gap in the 12 states that have failed to expand Medicaid eligibility.

During the legislative visits, YAAS participants also educated lawmakers about the ongoing problem of health plan copay accumulator adjusters (CAAPs). Advocates described how copay assistance programs (a lifeline for many in our community) are undermined by CAAPs, and asked lawmakers to take steps to protect patients against this harmful health plan practice.

Quick Hits:

  • North Carolina became the seventh state this year (and 12th state overall) to enact state law protections against copay accumulator adjusters. Congratulations to Hemophilia of North Carolina and all the advocates who worked for adoption of SB 257!
  • The FDA’s Advisory Committee on Cellular, Tissue, and Gene Therapies held a two-day public meeting in early September to discuss the toxicity risks of adeno-associated virus (AAV) vector-based gene therapy products. HFA, together with NHF, World Federation of Hemophilia, and European Haemophilia Consortium, submitted comments for consideration by the Advisory Committee.
  • The U.S. Centers for Medicare and Medicaid Services finalized the final installment of the Notice of Benefit and Payment Parameters (NBPP) rule for plan year 2022. Among other things, the final NBPP extends the open enrollment period for the federal ACA Marketplace by one month; provides for more outreach and consumer assistance; and allows low-income people who are eligible for full premium subsidies to enroll in coverage year-round via a monthly special enrollment period.
  • The U.S. Department of Health and Human Services reported that more than 2.8 million people gained access to health insurance during the 2021 COVID-related special enrollment period. A record-breaking 12.2 million people are now enrolled in health insurance via the ACA Marketplaces, with another 82.3 million people insured through Medicaid and the Children’s Health Insurance Program.
  • HHS published notice on September 1st that it is delaying implementation of the “SUNSET Rule,” a controversial regulation adopted in the final days of the Trump Administration. The SUNSET Rule would have required HHS and all of its divisions to review all their regulations every 10 years.


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