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As we close out 2021, we want to reflect on HFA’s policy agenda: how our policy priorities shaped our advocacy efforts over the past year and what we expect and plan for 2022.

HFA’s policy agenda always centers on access – access to treatments and care, access to quality health coverage, access to relief from ever-higher cost-sharing (aka out-of-pocket costs). An abbreviated and very high-level overview of the 2021 policy landscape and HFA’s access advocacy over the past year would have to include:

  • Supporting equitable expanded access to quality care and coverage by
  • Addressing the cost of coverage and care (affordability) issues by
    • Working in conjunction with HFA member organizations and national coalition partners to advocate for state copay accumulator adjuster protections (seven states succeeded in passing such laws in 2021; at year-end, 12 states plus Puerto Rico now have protections in place for enrollees in state-regulated health plans).
    • Escalating and continuing advocacy efforts, through HFA’s virtual Fly-In and in coalition with other national partners, for federal copay accumulator adjuster protections, including HR. 5801, the Help Ensure Lower Patient Copays Act.
  • Upholding patient access to all clinically-appropriate bleeding disorders treatments by
    • Supporting federal and state efforts to enact step therapy guardrails (five more states successfully passed new protections in 2021).
    • In partnership with HFA member organizations and NHF, participating in state Medicaid deliberations over preferred drug lists and the “management” of bleeding disorders treatments.

In 2022, HFA’s Public Affairs team will persist in championing policies that allow individuals and families affected by bleeding disorders to thrive. We will continue to fight for equitable expanded access to high-quality care and to affordable, quality coverage. We will continue to demand action to address the problem of ever-higher out-of-pocket costs facing people who live with bleeding disorders and other chronic conditions. And we will pursue all these policy priorities with a reaffirmed emphasis on health equity and inclusion. Please stay tuned in the coming year as we all return from the holidays, refreshed and ready to resume the work of ensuring access to care and coverage for members of the bleeding disorders community. And thank you, as always, for your continuing interest, your engagement, and your advocacy!

Quick Hits:

  • The fate of the “Build Back Better Act” was thrown into doubt when West Virginia Sen. Joe Manchin announced on December 19th that he would not support the House-passed bill. (Since Republicans uniformly oppose the BBB Act, passage of the legislation will require unanimous Democratic support, including from Sen. Manchin.) The BBB Act includes numerous health reforms that are priorities for HFA: extension of the enhanced ACA premium subsidies, a fix for the Medicaid coverage gap, permanent funding for the Children’s Health Insurance Program (CHIP), paid family and medical leave, and more. The Administration and Congressional leadership have pledged to continue working toward passage of a revised bill.
  • The open enrollment period (OEP) for 2022 health insurance continues in healthcare.gov and for all state-based Marketplaces through at least January 15 (except for Idaho, where the OEP ended December 22). If you need insurance but didn’t sign up before December 15, use this extended opportunity to get coverage for 2022. And, if you find yourself re-enrolled in a plan that is more expensive than you expected, you may be able to use the extra time in this OEP to change your coverage and avoid higher costs for at least 11 months (February-December) of 2022.
    • Nearly ten million Americans have signed up for or renewed Marketplace coverage since the November 1 start of the OEP.  When state-based exchanges are counted along with the states that use the healthcare.gov platform, 13.6 million Americans have signed up for ACA insurance. According to the U.S. Centers for Medicare and Medicaid Services (CMS), 92 percent of healthcare.gov consumers are receiving enhanced premium subsidies under the ARPA. Those enhanced premium subsidies, unfortunately, will expire after 2022 unless Congress acts to extend them (as proposed in the BBB Act).
  • Since the start of the COVID public health emergency (PHE), enrollment in Medicaid and CHIP has increased by more than 12.5 million. The federal government has provided extra funding to help states cover their increased Medicaid responsibilities, granting states a 6.2% increase in federal matching funds. In exchange for this enhanced funding, states have been required to keep existing Medicaid beneficiaries continuously enrolled for the duration of the PHE. When the PHE ends, eligibility redeterminations will resume, posing challenges for CMS, for state regulators, and for Medicaid enrollees who will have to navigate red tape to stay covered. HFA and other patient advocates have written to all 50 state Medicaid directors, outlining steps that states can and should take to ensure that eligible Medicaid beneficiaries maintain their access to care at the end of the PHE.
    • In mid-December, the Biden Administration promised to give states at least 60 days’ notice before sunsetting the PHE. The current PHE declaration expires in mid-January 2022 but – given the Administration’s pledge to state agencies, and given the current omicron surge – all stakeholders expect that the PHE declaration will again be renewed, at least into March 2022.
  • CMS acted in December to revoke approval for a number of Medicaid eligibility restrictions allowed by the previous Administration. CMS advised Montana and Arkansas that the states must phase out premiums imposed on their Medicaid expansion populations. Separately, CMS revoked approval of Georgia’s work reporting requirements
  • The Biden Administration published its regulatory agenda for 2022, previewing actions that federal agencies plan to take in the coming year. Forthcoming health initiatives will include: a fix for the “family glitch” (currently, families can’t get premium subsidies for ACA coverage if one parent has an offer of affordable employer-sponsored individual coverage – even if the cost of covering the whole family is not affordable); curbing the sale of non-ACA, short-term health plans; restoring ACA non-discrimination requirements; and much more.

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