New drug could improve walking ability of people with multiple sclerosis
Posted Mar 06 2010 5:30am
NAPLES — Jeff Cooperstein is waiting for his Naples pharmacy to get a new drug for multiple sclerosis that can improve walking ability of people with the disease.
He fully expects a battle with his insurance carrier over the cost of the drug, Ampyra, which will run him $600 a month.
“It is kind of my forte now,” the 54-year-old retired Pittsburgh police officer, said. “I’ll fight to get it covered but it has to be worth it. I’m anxious to try it.”
His local neurologist, Dr. Matthew Baker, who is treating 300 patients with MS at Collier Neurologic, was told by the manufacturer that Ampyra would be available this month.
The timing would be a boost for people with MS and their support organizations which are conducting fundraisers this month.
The first event is today and involves a 5K walk/run to benefit the Heil Luthringer Foundation, a Naples organization that focuses exclusively on multiple sclerosis education. The second event is the National MS Society walk in Naples that will be Saturday, March 20, at Lowdermilk Park.
The Heil Luthringer foundation has a local support group, educational programs and offers scholarships to students whose parents have MS.
People can still participate in today’s run/walk by registering at 7 a.m. behind The Philharmonic Center for the Arts, 2010 Pelican Bay, in North Naples. The entry fee is $20. About 500 people are expected to take part, said Lisa Luthringer, co-founder of the foundation. She has been coping with MS for 20 years.
About 400,000 people in the United States have MS, an autoimmune disease, and it may affect 2.5 million people worldwide. MS affects women two to three times more than men. Symptoms vary greatly from person to person, ranging from fatigue, vision problems, memory problems and physical disabilities.
Cooperstein, who now lives in Naples, doesn’t plan on taking part in either walk, in part because of his busy schedule working on his bachelor’s degree online from a university in Colorado and from there, he’s planning on going to law school.
He was diagnosed with multiple sclerosis in 1994 when he was 38 and a police officer in Pittsburgh. Symptoms had been coming on for a few years and doctors couldn’t tell him what was going on.
“One night I couldn’t get bullets in my gun, I couldn’t load it and my chest was totally numb,” he said.
He went to the emergency room and a physician there told him to get an MRI the next day and that’s when he got the diagnosis.
“I worked six years after that as an officer,” he said. “I still played full-court basketball.”
When he started having to take more time off from work because of balance issues with his MS, the police department was less than understanding, he said.
“You wouldn’t know it unless you really know me,” he said.
He moved to Naples in 2003 and started seeing Baker, the local neurologist who has a lot of MS patients in his practice, about five years ago.
More recently, Cooperstein has been talking with Baker about the new drug and its precursor, 4-Aminopyridine, and what it can do for some MS patients. Before the clinical drug trials in the United States that resulted in Ampyra in tablet form, it was available as a compounded drug in Canada.
“People said it helped,” Baker said, adding that improved walking for MS patients can go a long way for the quality of their lives. “I think, for some people, it will make a difference.”
The catch is Ampyra doesn’t prevent loss of walking ability. Instead, as a symptomatic therapy it addresses a particular aspect of the a disease and works to improve someone’s walking ability which is already impaired, he said.
“People who respond to it have a 25-percent improvement in walking speed,” Baker said, adding that the downside is seizure risk.
“There is a lot of interest in it,” he said, referring to his patients.
The challenge with any new drug is insurance coverage, and Ampyra will run $11,000 a year without insurance.
That’s where Cooperstein’s perseverance will kick in; he has appealed insurance denials for other MS medications he takes and he fully expects to do the same for Ampyra. At the same time, he is still able to walk a quarter mile or more, so it may not be worth while for him.
“I’m going to give it a try but it has to have the ‘wow’ factor for me to take it,” Cooperstein said. “It’s up in the air what type of effect it is going to have for me.”
For more information about the Heil Luthringer Foundation: 248-2644 or www.empowermenteducation.org.