Updated December 23, 2022
In addition to the accomplishments below, Congress passed legislation attached to the 2023 spending omnibus that made Medicare reimbursement for supplies and services necessary for home infusions of intravenous immunoglobulin (IVIG) permanent, a priority for IDF for almost a decade.
The Immune Deficiency Foundation (IDF) prioritized advocacy in four areas for 2022: ensuring access to care, providing a voice for those with primary immunodeficiency (PI), expanding screening and diagnosis, and supporting emerging research and therapies.
Work continues in all of these areas headed into 2023, but IDF has also made significant progress with specific issues under these priorities. Here are IDF’s top advocacy accomplishments of 2022.
As a steering committee member of the Immunocompromised Collaborative, IDF engaged both the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), resulting in improved COVID-19 and mpox guidance for those who are immunocompromised. The drumbeat “What about the immunocompromised?” across two different public health emergencies emphasized to agencies the importance of providing timely and specific guidance for immunocompromised communities during infectious disease crises. IDF was also able to build ties with agency staff and position the Collaborative as a go-to resource for the immunocompromised perspective.
IDF joined the GBS/CIDP Foundation in filing two amicus briefs in lawsuits challenging the Department of Homeland Security’s (DHS) June 2021 decision to prohibit compensation for Mexican nationals with B1/B2 visitor visas who donate plasma. The briefs laid out how the decision negatively impacts plasma donations along the U.S. border with Mexico, how lower plasma supply impacts the manufacture of plasma-derived therapies like immunoglobulin (Ig), and the importance of Ig to those with PI. In September, the United States District Court granted a preliminary injunction barring DHS from enforcing the policy while the case moves forward.
To represent the unique perspectives and concerns of those with rare diseases like PI, IDF supports establishing a Rare Disease Advisory Council (RDAC) in all 50 states. RDACs serve as advisors to state government on a range of issues that directly affect those with rare conditions, from healthcare access to insurance regulations. In 2022, four states enacted legislation creating an RDAC: Colorado, Connecticut, Georgia, and Maine. Twenty-four states now have RDACs, and several others are working to get RDACs established.
IDF has also been working at the state and federal level to ban copay accumulator programs. Copay accumulators are an insurance benefit structure that does not ‘count’ drug copays from third parties (known as copay assistance) toward a person’s insurance deductible or out-of-pocket maximum. These programs target those who rely on assistance from charities or manufacturers to afford their medications and essentially allow insurance companies to collect deductibles or out-of-pocket maximums twice. This year, Washington state and Delaware passed legislation prohibiting copay accumulators, bringing the total to 14 states with copay accumulator bans. IDF continues to actively work on legislation in other states as a member of the steering committee for the All Copays Count Coalition.
IDF’s work on the issues above is not possible without advocates from the community, who bring the voice of those with PI to state and federal policymakers. If you are interested in advocating with us, sign up for IDF’s Action Alerts. Action Alerts let you easily sign on to letters or send templated emails to your legislators, letting them know how policies affect the PI community. Sign up for Action Alerts below to be notified when we need your voice on an issue.
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