While there are still some unknowns after the 2020 election, one thing is definite: the Immune Deficiency Foundation (IDF) will continue to work towards our mission of improving the diagnosis, treatment, and quality of life of people affected by PI. As policy changes are implemented in 2021 with newly elected officials, IDF will continue to work with government representatives at all levels to achieve our advocacy and policy goals.
We hope for the continued support of our advocates and volunteers as we pursue these objectives:
Ensuring continued Medicare coverage for home Ig Therapy
IDF is aggressively working to ensure that the Medicare IVIG Demonstration is extended beyond its expiration at the end of 2020. Those who wish to aid IDF in this endeavor can participate in the most recent action alert asking Congress to include an extension of the Medicare IVIG Demo in an end-of-year bill package. In 2021, IDF will focus our advocacy efforts on the adoption of permanent IVIG Medicare benefit.
Ensuring that state and federal policies are responsive to the unique needs of immunocompromised individuals in addressing the challenges posed by the COVID pandemic
IDF is leading the Protecting the Immunocompromised Collaborative, bringing together various immunocompromised patient communities to address the unique challenges faced by those with PI, auto-immune diseases, and other immunocompromised disorders. The Collaborative will work at the state and federal level on issues including vaccine allocation and uptake, home therapy, expanded telehealth, and community reopening policies.
Increasing plasma donations nationwide
At the state level, IDF will work to remove state regulatory barriers to the establishment and efficiency of plasma donation centers nationwide. At the federal level, IDF will support actions by the Center for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) to increase nationwide plasma donations. Together, these efforts will help increase plasma donations nationwide, which will ensure adequate production of Ig therapy to treat patients with PI and other disorders.
Maintaining patient protections provided by the Affordable Care Act (ACA)
People with PI and other rare, chronic conditions rely on protections established by the ACA. IDF will work to ensure these protections continue to guarantee access to affordable, comprehensive insurance and necessary treatments for people with pre-existing conditions, prohibit annual and lifetime caps on insurance coverage, and limit annual out-of-pocket costs.
Supporting the creation of Rare Disease Advisory Councils in each state
IDF will continue to advocate for Rare Disease Advisory Councils, which serve to advise state governments on issues related to rare diseases, including policies around coverage and allocation of new therapies. The establishment of these councils will give a voice to individuals with PI and other rare diseases.
Opposing co-pay accumulator programs
Co-pay accumulator programs, which prevent people from benefiting from co-pay assistance programs, have been instituted to the detriment of many in the PI community. By eliminating co-pay accumulators, IDF will help ensure patients have ready access to safe, quality, and affordable care.
IDF looks forward to furthering our goals by working with both returning incumbents and newly elected officials. The efforts of advocates and volunteers from the PI community remain invaluable to our success in meeting these objectives. We encourage community members to keep IDF abreast of relationships or personal connections they may have with elected officials in Congress and state legislatures. By sharing these connections with IDF, you will provide essential information and support to aid the fulfillment of IDF’s public policy initiatives. Unsure which relationships are worth sharing? Click here for guidance
IDF appreciates and admires the dedication and support of the PI community. If you have questions or concerns or would like to get involved, contact IDF or visit the Advocacy Center for more information.