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Top U.S. Officials Meet With the Rare Disease Community About COVID-19

The experts encouraged patients to get vaccinated but acknowledged questions about COVID-19 vaccine effectiveness for those who are immunocompromised.

four different "I got vaccinated" stickers

Top U.S. health officials recently met with rare disease patients to encourage them to get vaccinated against COVID-19.

Immunization offers some protection even for those with immune system problems, Dr. Anne Schuchat, Principal Deputy Director of the CDC, said.

“We think that vaccines are beneficial and safe in the immunocompromised, they can be protected at least partially by the vaccine,” Schuchat told participants in a webinar presented by the National Organization for Rare Disorders (NORD).

Questions have been raised about whether people who have immune deficiencies, especially those who don’t produce adequate antibodies, would be protected by the vaccines. As always, patients should consult with their doctors for advice. 

Immunity isn’t a guarantee, but even with lower antibody levels, a vaccinated person may still be protected from COVID-19, said Dr. Peter Marks, Director of the Center for Biologics Evaluation and Research at the U.S. Food and Drug Administration.

The uncertainty exists because current antibody tests are not as accurate or reliable as they need to be, according to Dr. Janet Woodcock, Acting FDA Commissioner.

Other medical experts consulting with the Immune Deficiency Foundation have said that COVID-19 vaccines might prompt a T cell response that could protect people from infection, even if they don’t produce antibodies. In May, the U.S. National Institutes of Health launched a 500-person study to measure vaccine effectiveness in those who are immunocompromised.

Until more is known, the federal officials at the NORD event recommended that those who have immune deficiencies remain cautious and continue to wear masks. They also advised against traveling, large gatherings and places with poor air circulation.

For those patients who have not yet been vaccinated, Dr. Sara Oliver, Epidemiological Intelligence Service Officer for the CDC, recommended visiting their clinical considerations website to learn more.