EveryLife Urges Action to CDC on COVID-19 Vaccines and Mask Guidance

In recent weeks the U.S. has seen tremendous progress in the fight against COVID-19, but several developments are also cause for concern in the rare disease community. On May 20, 2021, the EveryLife Foundation sent a letter to CDC leadership outlining these concerns and urging action.

The letter focused on three issues:

1. Emerging data that shows COVID-19 vaccines may be less effective for people with some immune compromising conditions
2. The impact CDC’s changes to mask-wearing guidance has on the rare disease population
3. Ongoing accessibility and information needs of the rare disease community as the COVID-19 pandemic evolves and vaccine roll-out continues

Recent research has shown that although it is safe, individuals who are immunocompromised, have had a solid organ transplant, or are on immunosuppressive medications may produce little to no antibody response to the current mRNA vaccines. This means that, despite vaccination, there may be a significant proportion of the population that is not protected from SARS-CoV-2 infection at the level described in the clinical trials.

Guidance and enhanced communication from the CDC are needed so that patients, families, and healthcare professionals can make informed decisions to protect themselves from COVID-19, particularly considering the recent updates to the CDC’s guidelines on mask-wearing. The letter also calls on the CDC to enhance data collection on “breakthrough” cases, those who contract COVID-19 despite being fully vaccinated, to build the evidence available to determine who is most at-risk, what interventions can help improve the likelihood of achieving full vaccine protection and what tests can reliably predict one’s level of protection. In addition, EveryLife urged the CDC to expand upon efforts to ensure accessible and equitable distribution of vaccines to high-risk adolescents and their families regardless of their geographic location, physical mobility, technology skills, or literacy levels.

The letter was informed by the Community Congress COVID-19 Response Working Group, including representatives from patient advocacy organizations, industry partners and other rare disease stakeholders. EveryLife Foundation will continue to work with this group of rare disease leaders to monitor the evolving needs of the community as more COVID-19 related restrictions and policy flexibilities are lifted.

Patients and caregivers with questions about the COVID-19 vaccine, new mask guidance or other best practices to stay safe, are urged to talk to their health care team, particularly if they have received a solid-organ transplant, have immunocompromising conditions or are taking immunosuppressive medications

Read the letter.