Inside STAT: What happened to PatientsLikeMe?

JAMES HEYWOOD WITH HIS BROTHER STEPHEN (THE BOSTON GLOBE)

After his brother Stephen was diagnosed with ALS in 1998, Jamie Heywood started the world’s first nonprofit biotechnology company, ALS TDI, with his family. His second company, PatientsLikeMe, was another outgrowth of watching his brother’s struggle. The website was not just a new place for patients to communicate, but also a source of data for scientific studies. But the venture, supported by deals with industry, has been forced by a shadowy U.S. regulatory body to unwind an investment by China-based iCarbonX. And Heywood is outraged. “If we can’t collaborate to improve human health with people who have done so credibly and well, well, I don’t know what we’re going to do as a world,” he said at a recent forum. STAT’s Matthew Herper has more here.