Lodi Woman With Rare Disease at a Loss after ‘Miracle Drug’ Price Skyrockets

LODI -- The beauty of playing piano, coaching Lodi students or gaining the trust of animals are what Marta Deike lives for.

"And I was not able to run hard and fast but I was able to live a meaningful, contributive life and now I don’t know what’s going to happen," Deike told FOX40.

Deike was diagnosed with a rare autoimmune disease known as Lambert-Eaton myasthenic syndrome, or LEMS. It causes the body to attack its own muscles, weakening it.

"It was an extreme struggle to just get up," Deike said. "I mean my task for the day during those two years was to take a shower."

She said a free drug known as 3,4-Diaminopyridine, manufactured by Jacobus Pharmaceutical, allowed her to move, run and ride again for years.

"And that was a miracle drug," Deike told FOX40.

The FDA allowed its use for the past two decades under a "compassionate use" program.

However, that changed in recent months when a different company, Catalyst Pharmaceuticals, got FDA approval for a slightly modified version of the medicine they call Firdapse, listing it with an even higher price tag.

"They’re a $375,000 cost per person, per year," Deike said. "I don’t know where that comes from."

Catalyst Pharmaceutical told FOX40 in a statement that in time, but not now, they will share exactly how they plan to broaden access to an FDA approved drug. Since the medicine treats a rare disease, Catalyst can also sell it exclusively for the next seven years under the law.

Dr. Peter Hilsenrath, a University of the Pacific professor of economics and Joseph M. Long chair of healthcare management, told FOX40 over the phone, "We need to take a harder look into patents."

"When we have a system of patents that protects drugs for extended periods of time, it’s to be expected that some drugs could be very, very expensive," he continued.

Deike says insurance covers her medicine but she wants access to the original drug she said helped her thrive.

"I don’t have as much of the drug," she said. "It’s not as effective as the other drug and I won’t be able to carry myself throughout the whole day, much less run around."

Sen. Bernie Sanders also wrote a scathing letter to Catalyst, criticizing the price hike of the drug. Catalyst representatives said they will respond in a timely manner and said in a statement that they will "provide information about Firdapse and the programs that we have in place to raise awareness of LEMS."

Read Sen. Sanders letter in full by clicking here.

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