Experts to CMS: Make Alzheimer's drug data public

More than two dozen physicians, public health researchers and health policy experts are urging the federal government to publicly share registry data on the safety and efficacy of the Alzheimer's drug Leqembi. 

In early July, CMS said it would start covering the drug for Medicare patients outside of clinical trials. Physicians who wish to prescribe Leqembi must submit data to an agency-run patient registry to collect evidence on the drug's real-world efficacy. CMS has committed to sharing that data with researchers.

"However, we are very concerned that Leqembi registries developed by medical societies, medical centers, nonprofit organizations or other non-governmental entities may limit access to their respective population-level data, potentially making it difficult for CMS and other researchers to conduct independent analysis of the data," the experts wrote in a July 27 letter to HHS Secretary Xavier Becerra and CMS Administrator Chiquita Brooks-LaSure.  

 As a condition of coverage, CMS should require that data submitted to all registries must be accessible for independent statistical analysis, the researchers said. Additionally, all registries, whether government-funded or privately run, should collect a standard set of baseline information, they added. 

View the full letter here

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