More MS news articles for July 2002

Compound Problems

A Weekly Checkup on Health Care Costs and Coverage

Tuesday, June 25, 2002; Page HE03
Melody Simmons

Nu'man El-Amin of Fredericksburg has tried many things to subdue the debilitating symptoms of multiple sclerosis (MS): Bee stings, steroids, acupuncture, even rolfing. But it's a drug that has helped him most.

"When I was taking it, I could actually wiggle my toes," El-Amin, 60, said of Prokarin, a drug he used for five months. "It was what I had been looking for all my life."

But El-Amin can't afford any longer to pay for the Prokarin, which cost him $250 a month. "In the four months I haven't received it," he said, "I have seen a rapid decline and deterioration. I'm going downhill."

Alas, the medication isn't covered by Medicare or by Medicaid in Virginia. The state program abides by a strict formulary for MS patients, and this list of drugs does not include Prokarin, which is compounded, or hand-made, by pharmacists. A combination of histamine and caffeine, it is not approved by the U.S. Food and Drug Administration for treatment of MS. But it worked for El-Amin, a former painting contractor whose MS requires him to use a wheelchair.

It's not a matter of Prokarin's being too expensive for the state Department of Medical Assistance Services (DMAS). In fact, the agency will reimburse El-Amin for Avonex, which costs $1,200 per month. (He says he tried Avonex, but it didn't work.) El-Amin has received a similar denial from Medicare, which his disability qualified him to use as a secondary insurer.

An appeal to state Del. William J. Howell (R-Stafford) brought sympathy, but no action. "He's caught in the middle," Howell said after being told by DMAS that there are no exceptions to the formulary and reimbursement rules.

The situation is familiar to those coping with costly, chronic, disabling illnesses like MS, says Jeanne Angulo, president of the National Capital Chapter of the Multiple Sclerosis Society. Public and private insurers try to keep up with an expanding array of treatments, ranging from cutting-edge mainstream therapies to alternative treatments and more obscure treatments that appear to be effective but have not been widely adopted. Critics say the system moves too cautiously; while public and private insurers counter that paying only for proven treatments guards against fraud and misspending of government dollars.

The problem is exacerbated, as El-Amin insists, because a disease like MS can't be treated with a one-size-fits-all approach. "What works for one doesn't work for another," Angulo says. "If Prokarin -- or bee stings -- work for you, of course you do it."

As long as you can pay.

© 2002 The Washington Post Company