Statement on federal policy changes: Pledge to protect the immunocompromised

For 45 years, the Immune Deficiency Foundation has worked to improve patients’ lives through a commitment to individuals living with primary immunodeficiency (PI) and those whose immune systems make them most vulnerable to threats from infectious diseases. COVID-19 highlighted the critical need to protect those in our community who are immunocompromised.

That urgency has continued post-pandemic and is again amplified as health policy decisions are being made that will have broad-reaching impact on the community we serve. With 14 million Americans under the age of 65 considered immunocompromised, and 58 million people over the age of 65 whose immune systems are naturally less effective, the stakes are high.

Patient advocacy organizations have the unique role—and responsibility—of ensuring the patient voice is prioritized and not lost. A human being, a personal journey, and individual impact are behind every number. IDF remains steadfast in protecting critical programs and initiatives on which our community relies and urge the administration to:

Ensure vaccines remain accessible to all and supported by federal and state health agencies

Immunocompromised individuals are especially vulnerable to infectious diseases. Vaccines save lives by preventing the spread of deadly diseases and protecting individuals from severe illness and complications. People who are immunocompromised, including those with PI, rely on community immunity to minimize their exposure to dangerous germs. Community immunity describes the level of immunity, gained either through vaccination or natural infection, needed within a group of people to prevent an infectious disease from spreading. A decrease in vaccination rates weakens community immunity, putting those with compromised immune systems at a higher risk of severe, preventable infections. That’s 72 million people or 1 in 5 individuals who are at risk when the population is not sufficiently immunized.

Vaccines stand as one of the most significant public health achievements of the 20th century, revolutionizing disease prevention and dramatically improving the health and well-being of the American people. This success was driven by the strong support and trust in established vaccine science, championed by public servants and healthcare leaders. Community immunity depends on widespread public education, vaccine promotion, and robust support for administration and distribution of vaccines. The public relies on national health leaders for guidance and recommendations, and we are committed to working together to uphold this legacy.

Safeguard vital public health data for monitoring infectious diseases

Public health monitoring and data collection are essential for providing the information necessary to prevent and control disease. They improve our understanding of disease transmission, enable outbreak identification, and facilitate timely interventions. Without this data, we cannot effectively predict or respond to infectious disease outbreaks like tuberculosis and measles, foodborne illnesses such as E. coli, or identify circulating contaminated consumer products and medicines.

To carry out this monitoring effectively, expertise and personnel are essential across multiple federal agencies. However, rapid and sweeping personnel cuts and communication freezes threaten these agencies' ability to deliver timely data and public guidance, including product recalls. Not having this data endangers public safety and health, particularly for vulnerable populations like the immunocompromised.

Continue critical investments in innovation and research

Investing in research accelerates the development of innovative therapies, enhances diagnostic capabilities, and brings hope to patients and families affected by rare, genetic conditions like PI. Funding enables scientists to pursue promising leads, conduct clinical trials, and translate laboratory discoveries into life-changing therapies and best practices in clinical care, making the U.S. a global leader in medical discoveries.

Without consistent financial support, research progress stalls, delaying breakthroughs that could benefit thousands of patients. The insights gained through rigorous, well-funded scientific inquiry directly translate to improved patient outcomes. Policies that halt grants that are already awarded, prevent government scientists from sharing their research findings, and impose a strict cap on indirect costs not only impede future research, but endanger critical research, including clinical trials, already underway.

In addition, the continuity of government programs and initiatives, including advisory boards and scientific meetings, is paramount for integrating scientific knowledge into the everyday lives of patients.

Support full access to care and treatment

Access to diagnostics and treatment is paramount to our mission to improve the diagnosis, treatment, and quality of life of every person affected by PI. The volume of Americans who receive their health care coverage through Medicare and Medicaid makes preservation and investment in these programs vitally important to accessing care. PI crosses all income levels, disability status, and age demographics. Therefore, our efforts will continue to advocate for a healthcare system that addresses persisting inequities, provides affordable, accessible, and adequate health care coverage to all, and preserves the coverage provided to millions through Medicare, Medicaid, and the Affordable Care Act individual marketplace.