Throughout the COVID-19 pandemic, the Immune Deficiency Foundation (IDF) has been actively advocating on behalf of the primary immunodeficiency (PI) community. We have reached out to Congress to ensure that patients have access to home infusions and have joined forces with other patient organizations to support issues including expanded telehealth services, increased access to health insurance, support for research, and federal promotion of plasma donations. In doing this, we recognized the need for a strong voice representing all immunocompromised patient communities at the federal, state, and local levels.
While COVID-19 response announcements often reference, “the immunocompromised,” there has been little in the way of guidance to ensure protections for this group. As policies are developed, it is essential that those who are immunocompromised have a voice in decision-making. Even after the pandemic runs its course, there will continue to be a need for protections and responsive governmental policies for those with compromised immune systems. To address this concern, IDF has created the Protecting the Immunocompromised Collaborative and has begun working with peers to develop a steering committee.
To begin this important work, IDF, the Lupus Foundation of America and the American Autoimmune Related Diseases Association (AARDA) drafted a letter to Congressional leaders, urging them to task the Centers for Disease Control and Prevention (CDC) to work with the immunocompromised stakeholder community to develop recommendations aimed at addressing the needs of those with compromised immune systems. This letter was signed by a diverse array of 40 stakeholders, including organizations that represent individuals with conditions such as arthritis, lupus, HIV/AIDS, multiple sclerosis, psoriasis, kidney disease, and cancer. This demonstrates the breadth and depth of concerns that exist and a desire to see additional attention and guidance from public health officials that are focused on the immunocompromised. The need for protections has become even greater given the recent challenges around reopening measures and varying state and local policies and enforcement.
The letter expressed the importance of retaining flexibilities that enable the immunocompromised to receive home-based medical care because of the risk posed by receiving care outside of the home and the continuation of such flexibilities given the uncertainty that lies ahead. It also noted that guidelines must include more nuanced screening standards, particularly if such screens will determine a person’s ability to travel, work, or attend school. It also touched on the importance of educating the public about the safety and efficacy of vaccines since widespread or herd immunity is essential in protecting individuals with compromised immune systems, some who cannot be vaccinated themselves.
IDF looks forward to working with those organizations who signed this important letter – and those who may seek to join this effort – to advocate for the needs of the immunocompromised with Congress, federal agencies, and state and local elected and health officials.
The following organizations signed the first Congressional letter:
- American Autoimmune Related Diseases Association (AARDA)
- Lupus Foundation of America
- Advocacy & Awareness for Immune Disorders Association (AAIDA)
- The AIDS Institute
- ALPHA-1 FOUNDATION
- The American Liver Foundation
- APS Foundation of America, Inc
- Arthritis Foundation
- Autoimmune Encephalitis Alliance, Inc
- CancerCare Chronic Care Collaborative
- Chronic Care Policy Alliance
- Chronic Disease Coalition
- Colorado Gerontological Society
- Family Voices Family Voices NJ
- GBS|CIDP Foundation International
- Global Healthy Living Foundation
- Immune Deficiency Foundation (IDF)
- International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)
- International Pemphigus Pemphigoid Foundation
- Lupus and Allied Diseases Association, Inc.
- Multiple Sclerosis Association of America (MSAA)
- The Myositis Association
- National Eczema Association
- National Health Council
- National Hemophilia Foundation
- National Kidney Foundation
- National Multiple Sclerosis Society
- National Psoriasis Foundation
- Parent Project Muscular Dystrophy
- Parents Reaching Out to Help
- Platelet Disorder Support Association
- Pulmonary Hypertension Association
- SCID Angels for Life Foundation
- Sjogren's Foundation
- Solve ME/CFS Initiative
- SPAN Parent Advocacy Network
- Susan G. Komen