SUFFOLK, Va. (WAVY) – An Army veteran living with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is hoping he can soon get a breakthrough medicine. The new drug is the first reason for hope in many years for people with the deadly disease.
Although the FDA approved Radicava in May, doctors at McGuire Richmond Veterans Administration Medical Center must first vote on the new drug before veterans there can get it.
Don Crawley, 64, got the word from his doctor just a few months ago at the Richmond VA hospital.
“He said you’ve lost a lot of use in the muscles in your left leg, and you’re losing muscle in your right arm, and my diagnosis is ALS.”
It was a life-changing moment for the man who was a door gunner in a gunship helicopter in Vietnam.
“I went outside, got emotional, cried, got over it and said this is what it is.”
Crawley said he knew something was wrong when he began to lose function in his arms and legs, and was losing 10 pounds a month for three months.
ALS has no cure — but the FDA has just approved a new treatment. Crawley’s VA neurologist could not speak with us on camera, but civilian Neurologist Soham Sheth M.D., of Bayview Physicians Group in Chesapeake, says Radicava is an important breakthrough.
“It’s another option in a disease where we really can’t do much.”
The ALS Association says the wait for any sort of encouragement has been long and agonizing.
“It’s exciting that there’s a new treatment,” said Calaneet Balas, ALSA Executive Vice President in an interview with 10 On Your Side. “It’s the first one that has come out in 22 years and only the second on market, so I think it gives people a lot of hope.”
“Without the medicine, I’m pretty short term,” Crawley said. “Something like three years — maybe the second year I’ll probably be on a ventilator, and then, well you know what happens after that.”
ALS attacks the muscles and functions such as speaking, swallowing, walking and breathing that we take for granted. Trials have shown Radicava slows the progression of the disease, using the Functional Rating Scale (Revised) utilized by neurologists to evaluate their patients with ALS.
“It has the potential to reduce loss of functionality by up to 33 percent,” Balas said.
Before Crawley can get Radicava from his VA neurologist, the Pharmacy and Therapeutics Committee at the Richmond VA Medical Center must approve it.
McGuire Richmond VAMC released the following statement about the medicine:
We are always excited about the potential of a new treatment option for our veterans. Any new medications that have not been previously administered in the facility are required by The Joint Commission to be reviewed by the medical center’s Pharmacy and Therapeutics Committee to determine several factors such as is the medication therapeutic, how the drug will be utilized, and education for clinicians and patients.
If approved, the medication can be made available to our patients within two to three weeks usually. If a medication is determined to be appropriate for use by a patient, the cost is not a consideration. On average there are two to three medications per year that are decided against by the committee after review.”
Radicava involves the patient getting two weeks of daily IV infusions. That alone runs about $12,000, and repeats each month, so Radicava costs about $150,000 a year.
Sheth says ALS researchers are looking closely at a possible connection between ALS and veterans.
“Some data shows that veterans for some reason are at higher risk of having ALS – almost twice the risk – and the interesting part is we don’t know why.”
Crawley knows he needs to be cautious about his optimism, waiting for the committee members to vote. “I would tell them to put their self in my shoes. That this is life and death.”
The odds seem good for Crawley. The Richmond VA Medical Center says it will review about 40 medicines in a typical year, and reject only two or three. The review is set for Aug. 3, and we will update this story once a decision on Radicava is made.