PITTSBURGH (KDKA) — A medical first, here in Pittsburgh.
Father, husband, and vacuum technology coordinator Rene Fogarty is the first person in the United States to get a new drug called Radicava. It’s for ALS — amyotrophic lateral sclerosis — also known as Lou Gehrig’s Disease.
“Well, it’s an honor,” Rene said. “It’s for all those out there yet to be diagnosed.”
This progressive disease affects nerve cells that control movement. Rene’s first symptom was weakness in his leg. The disease leads to paralysis and death, typically within two to five years. There is no cure.
“It’s a drug that can neutralize toxins in the body, which we feel are causing the nerve damage in patients with ALS,” explained Dr. Sandeep Rana, an ALS specialist at Allegheny General Hospital.
This new drug was just FDA approved, based on studies done in Japan. Compared to people on placebo, people on Radicava had a slowing of progression, maintained day-to-day function, and had an improvement in survival by three to six months.
Rene got word late on Aug. 10 that he was a go for Aug. 11.
“My stepson said I was very brave,” Rene said.
No major side effects with the drug, but it is expensive: $145,000 a year. Insurance will cover it with certain criteria.
Rene is ideal: early in the disease, and able to function and work independently.
“He’s a young individual, at the peak of his career. He was just diagnosed a few months back. He’s still fully functional. He’s still doing his job,” Dr. Rana said.
It takes an hour to run in by vein, and he does this for 14 days straight, followed by 14 days off, and the cycle is essentially repeated.
This is the first new drug in 22 years. The last drug to become available, Riluzole, prolonged life by three months, but not necessarily the best three months. Trials of other drugs in the last two decades have not been successful, partly because of the nature of the disease.
“We do not fully understand what causes ALS,” Dr. Rana said. “It’s still a mysterious illness.”
Rene’s greatest hope?
“Maybe buy some time,” he said. “I know it’s not a cure in any sense of the way, so… but who knows? There are other drugs that are being in trials now, and maybe this will buy me enough time to have other opportunities.”
While this is the first patient in the United States getting this new drug, others are getting it Friday as well. Some patients in Buffalo, for instance. Then after Friday, several other patients here in Pittsburgh are also in line to get the new treatment.