Many MS patients can't afford new drug

February 24, 1994|By Knight-Ridder News Service

WASHINGTON -- When the Food and Drug Administration approved the first drug treatment to affect the course of multiple sclerosis in July, MS patients rejoiced.

Clinical testing showed that Betaseron, while no cure, appeared to slow the progression of the disease that can rob MS patients of the ability to walk, talk and see.

But thousands of those same MS patients now are frustrated, caught in a bureaucratic bind that penalizes middle-class MS sufferers who are too well-off to get the government to pay for the drug, and too poor to buy it on their own.

"My doctor put me down number one on his list to get it," said Lynn Smith, 37, a homemaker from Bradenton, Fla., whose MS has left her legally blind.

"I can't get it now because Medicare will not pay for it," Smith said. "I'm pretty much stuck."

If Mrs. Smith were impoverished, she would be eligible to get the drug through Medicaid, the federal-state health care program for the poor. It pays for prescription drugs, including Betaseron, which costs about $1,000 a month.

And if she were uninsured, she might get it free from its distributor, Berlex Laboratories of Wayne, N.J., which has a program to supply Betaseron to the uninsured.

But Mrs. Smith, who is married to a truck driver making about $15,000 a year, isn't poor enough to qualify for Medicaid. And Berlex doesn't consider her uninsured, since she has Medicare coverage, the federal health care program for the disabled and people age 65 and older.

Medicare will not pay for prescription drugs unless they are administered in a hospital or a doctor's office, according to program spokesman Bob Hardy. There are only rare exceptions, such as anti-rejection drugs for people have had an organ transplant.

Federal records show that 64,400 MS patients were on Social Security's disability rolls last December, which entitles them to Medicare benefits after a two-year waiting period.

"They have right in their grasp things that can change the course of their MS, but they are not going to get them unless there is a revamping of the law," said Arney Rosenblat, spokeswoman for the National Multiple Sclerosis Society.

Betaseron, an injectable drug, is effective in reducing the frequency and severity of MS flare-ups if it is taken every other day without interruption for years.

The drug is approved for treatment of the relapsing-remitting form of MS, marked by periodic attacks followed by partial or complete recovery. About 65 percent of the 350,000 MS patients in the United States have this form of the disease, according to Mr. Rosenblat.

Demand for the drug has been intense. Its distributor, Berlex, set up a lottery to deal with the demand while production is increased. More than 80,000 people have signed up for the drug, which is being distributed to the 24,000 patients with the lowest lottery numbers, according to Dr. Jeffrey Latts, vice president for clinical research at Berlex.

Dr. Latts said Berlex was rapidly increasing production so that the shortage would be eliminated by the end of the year. He said the company was finding that about 90 percent of private insurance plans would pay for the drug.

President Clinton's health care plan would add a prescription drug benefit to Medicare. But the plan is under attack in Congress for being too costly. There could be pressure to remove the drug benefit.

In a letter-writing campaign to Congress, the MS society argues that adding a Betaseron benefit to Medicare could actually cut the program's cost over time by reducing hospital stays.

"It's just a real Catch-22," said Martha Keys, the MS Society's vice president for public affairs.


For more information about MS or Betaseron, call 1-800-LEARN MS, the 24-hour toll-free number of the National Multiple Sclerosis Society.

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