Patients For Affordable Drugs sent a letter and a petition with nearly 2,000 signatures last week to Jim Greenwood, the CEO of the Biotechnology Innovation Organization. The letter and petition asked the trade organization to publicly denounce Catalyst’s recent action and rescind its membership from the lobbying group.

“The response from BIO? Crickets,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs. “Catalyst added a preservative to an old drug, renamed it and slapped on an unconscionable price tag. That isn’t innovation. It’s highway robbery. BIO could demonstrate concern for patients, take a stand, and oust this bad actor, but by doing nothing, Jim Greenwood is instead endorsing this type of behavior.”

Mitchell today sent a tweet to again request Catalyst’s expulsion from Greenwood’s organization.

For 20 years, patients with Lambert-Eaton myasthenic syndrome (LEMS) were able to obtain the same drug – known as 3,4-DAP – for free from Jacobus Pharmaceutical under the Food and Drug Administration’s compassionate use program. Now, Catalyst has licensed the drug in the U.S. and received exclusive rights to market Firdapse for seven years under the FDA’s orphan drug designation. It set the list price at $375,000 per year, with a net price of more than $300,000 per year including rebates to insurers and other discounts.

Bhanu Patel, who lives with LEMS, told CNN “Without this medication, you just can’t even move. It’s like your body is totally like a sweet potato.”

Unable to afford the drug’s new price, she has been rationing her last three month’s supply of pills as Medicare and other assistance programs have not paid for the medication.

“The words that I can use is I can’t believe this is happening, to be honest,” she told the network.