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spotlight

MARAC Advisory Statement: Update About COVID-19

December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community that the COVID-19 pandemic is having another increase in infections. New variants like omicron are emerging, as are common for RNA viruses, and vaccination rates need to consequently improve. Vaccinations can protect against severe illness. A new medication might also help as early treatment for infected individuals.

MARAC Recommendations
• No general recommendation for all individuals with SCD to stay home nor for all to return to in-person activities. Patients and families need to make individualized assessments of the risks and trade-offs of returning to work or school in person. Factors to consider include vaccination status, the rate of COVID-19 and variants in your community, family socioeconomic situation, protective measures in the building (proper ventilation, physical distancing, etc.), mental health needs and educational needs.

Dec 23, 2021
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clinical trials and research

SCDAA News Advisory: Partial Hold on Gene Therapy Trial

On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily stopping testing on study volunteers under age 18. This partial hold was a response to the investigation of one adolescent with sickle cell disease who has persistent anemia (not dependent on transfusion) a year and a half following treatment. Read more.

Adults can continue enrollment and treatment in bluebird bio studies. Other clinical research studies of gene therapy for sickle cell disease are continuing.

The clinical research process has many built-in safety precautions, which include the partial hold implemented by the FDA. MARAC will continue to monitor the situation closely on behalf of the individuals and families living with sickle cell disease.

Dec 20, 2021

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