More than two dozen prominent health policy experts are urging the Biden administration to ensure that patient data collected about a new Alzheimer’s treatment is accessible to the public, which they say is critical to understanding the risks and benefits of the medicine.
The drug, called Leqembi and made by Eisai, is the first to have been found to slow progression of the disease. Before providing coverage, Medicare officials are requiring physicians to submit data to a patient registry for the medication. The agency runs such a registry and has committed to making the data available to researchers.
For now, the only option for doctors is to submit to this registry. But the Centers for Medicare & Medicaid Services has indicated it will allow physicians to submit data to registries run by other organizations. But in a letter sent to federal health officials Thursday, health policy experts expressed concern that registries developed by private companies may limit access to their respective patient data.