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The immunocompromised population is large and diverse, including people across all ages, genders, races, ethnicities, and socioeconomic statuses, and accounts for nine million Americans. This growing population of immunocompromised individuals in the United States includes an estimated 500,000 who have a primary immunodeficiency (PI).  

About The Immunocompromised Community

Primary immunodeficiencies (PI) are a group of more than 450 rare, chronic conditions in which part of the body’s immune system is missing or does not function correctly. These conditions are caused by hereditary genetic defects and can affect anyone, regardless of age, gender, or ethnicity. Secondary immunodeficiencies occur when the immune system is weakened by another illness, such as HIV/AIDS, or by treatments for conditions, such as chemotherapy for cancer, biologics for immune-mediated diseases, and immunosuppressants for persons receiving bone marrow and organ transplants. 

Those who are immunocompromised face unique challenges that require unique protections, particularly during the current pandemic: 

  • COVID-19 prevention and treatments: Vaccines are not always safe or effective for some individuals, like those with immunodeficiencies. Alternatively, for those who don’t register a vaccine response, there are therapeutics authorized for the prevention and early treatment of COVID-19, such as Evusheld, Paxlovid, and Molnupiravir. The wide distribution and dissemination of therapeutics authorized for the prevention and early treatment of COVID-19 are critical to combating the virus throughout the immunocompromised community.

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  • Access to care through telehealth: Telehealth flexibilities due to COVID-19 have allowed many Americans, especially those with immunocompromising conditions, to experience the benefits of telehealth services. Making these telehealth flexibilities permanent means continued access to the healthcare services the immunocompromised community needs while limiting potential exposure to the virus.

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  • Use of and investment in widespread testing: Widespread testing allows the ability to predict when new waves of infection are coming, helping to protect vulnerable communities like those who are immunocompromised. Congress must continue to invest in and promote widespread access to testing to address community spread early.  

The Immunocompromised Collaborative  

In 2020, in response to the challenges faced by those who are immunocompromised, exacerbated by the pandemic, the Immune Deficiency Foundation (IDF) established a Collaborative. The Immunocompromised Collaborative – steered by IDF, The AIDS Institute, the Autoimmune Association, the Lupus Foundation of America, and Susan G. Komen – ensures that the immunocompromised have a voice in all policy issues impacting their health and wellbeing.  

Congressional Support

Support from Congress members for the Immunocompromised Collaborative and its mission will help ensure the challenges outlined above are addressed. For more information, please reach out to Lynn Albizo at lalbizo@primaryimmune.org

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