‘Socialized Research’ and ‘Privatized Profits’: California's Gene Therapy Research and Million Dollar Plus Treatments

Only eight days after the California stem cell agency approved its most recent award for its $60 million battle against sickle cell disease came a cautionary note from 3,000 miles away.

The note sounded financial misgivings regarding the proposed, gene-editing treatments that have been highly touted as a possible cure for sickle cell disease, an affliction that occurs predominantly among African-Americans and other minorities. 

The concerns came from the 60-member Congressional Black Caucus. Million-dollar plus price tags were the main matter for the federal lawmakers. “We are troubled that access to these medicines is anything but guaranteed for the patients who would benefit most from them,” the lawmakers said in a letter to the head of the mammoth U.S. Department of Health and Human Services. 

The timing of the July 28 letter appears merely coincidental to the approval on July 20 of an $8.4 million gene-therapy grant by the California Institute for Regenerative Medicine (CIRM), as the stem cell agency is officially known. 

The caucus letter was not directed at CIRM, which is likely not even on the lawmakers’...