The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Telehealth services, also known as telemedicine or remote medicine, allow patients to ‘see’ and interact with their healthcare providers without being physically in the same place. These services can include phone calls, video chat appointments, remote monitoring of patient vital signs, and communicating via secure email.
While technology allows many types of health services to now be delivered remotely, laws have not kept pace. For example, Medicare coverage and reimbursement rules, conflicts with patient privacy laws (specifically the Health Insurance Portability and Accountability Act of 1996 (HIPAA)), and state-based healthcare professional licensing remain barriers to telehealth access.
Individuals with primary immunodeficiencies (PI) are immunocompromised and susceptible to infections. The ability to receive healthcare services at home allows those with PI to avoid being in environments where they are likely to encounter germs, such as doctor’s offices and outpatient clinics.
While private insurers have varying telehealth coverage policies, Medicare rules strongly influence the development of private insurance coverage policies and practices. During the COVID-19 public health emergency, patients had expanded access to and coverage of telehealth because of policy flexibilities, but those policies either expired with the emergency declaration or will expire on December 31, 2024. Expiring policy changes include:
As such, IDF supports legislation, such as the Telehealth Modernization Act (H.R. 7623), that will make expanded telehealth access and coverage within Medicare permanent, as well as state and federal legislation that removes other telehealth services barriers.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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