Statement on H.R. 1: Medicaid cuts threaten vulnerable patients

The decision to impose deep cuts to Medicaid and Affordable Care Act (ACA) Marketplaces comes at a time when the primary immunodeficiency (PI) community—and others who are immunocompromised—are already alarmingly vulnerable. While these cuts may be phased in over time, the long-term consequences are no less serious. As vital public health protections unravel, threatening vaccine access and herd immunity, healthcare has never been more critical for our community.

PIs are a group of more than 550 rare, chronic, and life-threatening conditions in which part of the body's immune system is missing or does not function correctly. Along with other immunocompromised individuals, many people with PI are extremely vulnerable to threats from infectious diseases. An estimated one in five people with PI rely on Medicaid for accessing lifesaving treatments, timely diagnoses, and high-quality care.^1,2

H.R. 1 (the One Big Beautiful Bill Act) is projected to leave 17 million people uninsured, drive-up costs for healthcare, and reduce reimbursement of emergency health services, especially in rural areas. These spending reductions, combined with other policy changes, drastically jeopardize the health of millions who are immunocompromised, including those with PI. In response, IDF will continue to advocate on the national, state, and local levels on healthcare and public health issues vital to the PI community.

While there are significant concerns regarding the implementation of many of these health provisions, IDF was encouraged to see the inclusion of the Orphan Cures Act, which will strengthen the development pipeline for therapies to treat individuals affected by primary immunodeficiency (PI). Many approved orphan drugs have applications across multiple rare diseases. Incentivizing further research into these therapies is both cost-effective and potentially lifesaving for patients who have few or no treatment alternatives. We support legislation that drives investment in orphan drug development so that individuals living with rare diseases have access to a full spectrum of effective treatments and a chance for a better quality of life.

¹ Medicaid Enrollment by State. World Population Review. 2025. 
² Primary Immune Deficiency Disease. National Institute of Allergy and Infectious Diseases. 2016.