Radicava, the first ALS treatment approved in 22 years, holds the promise to slow patients’ condition, but the drug’s price tag and access barriers are proving a complicated hurdle.
According to a STAT report, the drug costs $145,000. Despite the cost, some insurance providers have restricted access despite FDA approval last year for all ALS patients.
Thirty-six-year-old Sarah Benoit, whose insurer has denied access, told STAT time is slipping away.
“I’m getting slower and weaker,” she said in an interview. “It’s becoming harder to shampoo my hair, or use a pencil. My disease is progressing slowly, but it’s progressing.”
Harvard Law School professor Glenn Cohen tells STAT the health care system incentivizes this sort of behavior from pharmaceutical companies and insurers.
“When you allow private insurers to make decisions with only a patchwork of state regulations, they will choose not to cover every drug approved by the FDA,” he said in an interview. “And drug companies are for-profit entities that set prices based on market conditions. This is why you have debates over coverage.”