COVID-19

New research shows that although it’s 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. Our partners at EveryLife Foundation are working with patient advocacy organizations, industry partners and other rare disease stakeholders to monitor the evolving needs of the community as more COVID-19 related restrictions and policy flexibilities are lifted.

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 EveryLife Foundation is urging 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 Foundation has 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.

EveryLife Foundation will continue to work with the Community Congress COVID-19 Response Working Group, comprised of rare disease leaders, patient advocacy organizations, industry partners, and other rare disease stakeholders, to monitor the evolving needs of the community as more COVID-19 related restrictions and policy flexibilities are lifted.

John Hopkins Medicine researchers urge people who are immunocompromised to strictly follow COVID-19 safety measures, even after vaccination.