You are here

Collaborative letter calls for extending advance premium tax credits and closing the Medicare gap


The Immunocompromised Collaborative sent a letter to Senate and House leadership supporting the extension of advance premium tax credits in the Inflation Reduction Act and calling for action on the persistent Medicare gap in non-expansion states.

IDF and other Collaborative partners address state-level barriers to COVID-19 preventative Evusheld

7/20/22 - 7/21/22

Sponsored by AstraZeneca, the Immune Deficiency Foundation (IDF) and other representatives from the Collaborative hosted two workgroups with representatives from California, New York, Texas, Florida, and Georgia. The 90-minute strategy sessions identified barriers to access for patients and physicians seeking prophylactic and early treatments for COVID-19. The goal of these sessions was to help public and private entities address bottlenecks and barriers to access and help ensure more people who are immunocompromised have easy access to monoclonal antibodies and antivirals.

Collaborative submitted FY23 appropriations report language


In language submitted to Senator Duckworth, Representatives Jacobs and Matsui, and Appropriations Committee staff, the Collaborative called for a better bidirectional relationship and engagement between the Centers for Disease Control and Prevention and the immunocompromised patient community.

Rep. Sara Jacobs seeks Collaborative's input on letter concerning Evusheld distribution


Representative Sara Jacobs engaged the Collaborative to help craft a letter to Department of Health and Human Services leadership expressing concern over the distribution of Evusheld and lack of patient access.

Collaborative urges continued development and procurement of COVID-19 vaccines, therapeutics, and diagnostics 


In a letter to Congressional appropriations leaders, the collaborative urged allocation of funds directly to the Biomedical Advanced Research and Development Authority (BARDA) for the procurement of existing and new COVID-19 vaccines, therapeutics, and diagnostics. The letter also calls for the allocation of funds for new BARDA partnerships for the research and development of novel therapeutics, in addition to second-generation vaccines. 

In letter to CDC, Collaborative issues recommendations as pandemic continues to evolve 


The Collaborative urged the CDC and the administration to continue supporting widespread COVID-19 testing, deployment of COVID-19 therapeutics, and telehealth flexibility. The letter, which was also shared with Senator Tammy Duckworth's office, also asked that CDC consult with the immunocompromised community on future transmission and mitigation guidelines.

Collaborative and National Health Council provide input on letter from Senator Duckworth to CDC, FDA


The Collaborative joined the National Health Council to provide recommendations to Senator Duckworth’s office on a draft letter to the CDC. The letter addresses concerns for protections for immunocompromised populations and their need for easy access to a fourth COVID-19 vaccine dose. Issues in the letter include the need for: 

  1. Clarification on additional booster shots.
  2. A provider awareness campaign about the fourth shot for immunocompromised patients.
  3. A plan for ensuring pharmacies have up-to-date information and staff trained on vaccine guidance for the immunocompromised.
  4. Follow-up actions to ensure providers, patients, advocacy groups, and other stakeholders understand the latest guidance.

Immunocompromised Collaborative responds to PREVENT Pandemics Act draft language


The collaborative submitted a letter with 16 signatories to the offices of Senators Murray and Burr in response to the draft text of the Prepare for and Respond to Existing Viruses, Emerging New Threats and Pandemics Act, or PREVENT Pandemics Act. The letter provides specific recommendations by section for incorporating policies that address the needs of the immunocompromised. 

Immunocompromised Collaborative advocates for patients with immunodeficiencies


The Immunocompromised and the Coronavirus: A Virtual Congressional Briefing

What Policymakers Need to Know to Protect this Population


Watch the briefing recording to hear from immunocompromised individuals, advocates, and policymakers:

  • What does it mean to be immunocompromised?
  • How are immunocompromised individuals impacted by the pandemic?
  • Hear how inadequate patient protections, financial burdens, caregiver challenges, and limited treatment access uniquely affect the immunocompromised community 
  • What policies need to be in place including addressing vaccine access issues to ensure the immunocompromised are protected?
  • How do health disparities impact the immunocompromised? 

Download the Briefing Info Sheet

View Briefing Q&A Answers

December 21, 2020 Letter

October 20, 2020 Letter to the Centers for Disease Control

September 4, 2020 Letter on Vaccine Protocols

August 21, 2020 CDC Letter

July 10, 2020 Letter to Congress