The Coronavirus (COVID-19) pandemic demonstrates just how essential it is for individuals with compromised immune systems, including those with primary immunodeficiency (PI), to avoid potentially dangerous healthcare environments. While immunoglobulin (Ig) therapy is effective, the very nature of PI means our community is especially vulnerable to viruses like influenza and COVID-19. Ensuring that those with PI have continuous access to at-home Ig treatments, whether during a health emergency or during routine times, is essential to the well-being and safety of these individuals. On March 17, 2020, the Immune Deficiency Foundation (IDF) sent letters to the House and Senate majority and minority leadership urging Congress to take actions to ensure that people with PI in need of Ig therapy have access to treatments in the home and to ensure that Medicare beneficiaries who receive home Ig therapy are able to continue this treatment in the foreseeable future. As outlined in IDF’s March 31 blog post on home infusion access, in response to strong advocacy from IDF and other patient groups, the Centers for Medicare and Medicaid has now expanded access to home infusions during the pandemic.
In addition, during the COVID-19 outbreak, IDF continues to advocate in coalition with other patient organizations to support people living with PI and other rare and chronic conditions to ensure that policy makers are protecting the health, safety and economic wellbeing of those with the most vulnerable health conditions. As the political landscape continues to evolve, IDF remains active and engaged on issues that directly impact the PI community. Make sure to read IDF’s COVID-19 frequently asked questions blog post to learn about policies that may impact you or your family member.
Also, feel free to review the below advocacy letters to see all the issues that IDF is engaged in to ensure the PI community has a voice in policymaking surrounding the COVID-19 pandemic.
Families First Act Letter to Senate
Home Infusion COVID-19 Senate Ltr.
Home Infusion COVID-19 House Ltr.
IDF Home Infusion Congressional Ltr.
APLUS Plasma Donor Safety and Home Infusion Access Ltr.
Support for PPE to Administration
Guidance to States and Hospitals Regarding Nondiscrimination
Surprise Medical Billing Congressional Ltr.
COVID-19 Health Coverage Access Ltr.
Defense Health Research Consortium Ltr.