A fine mess

September 23, 1994|By Anna Quindlen

MARYBETH Nessler is neither a physician nor a researcher. But get her started on the subject of a drug called Betaseron and she sounds nearly as knowledgeable as many of them, and a good deal more agitated, too.

Since it was approved by the FDA last year, scientists have been keenly interested in Betaseron because it was the first drug thought to slow and alter the debilitating course of multiple sclerosis.

But Mrs. Nessler, a 38-year-old mother from Oregon with the chronic disease, became expert on the drug because she could not get it. Her case makes a powerful argument for an overarching policy that has fallen out of favor since the evening a year ago when the president held up a health-care security card on national television.

Health care reform has been flagrantly politicized ever since. The refrain of the opposition has been simple, repeated until it has the ring of familiarity, if not absolute truth: the United States should not tamper with "the finest health-care system in the world." If the measure is the ability to transplant a heart, to administer chemotherapy, to reattach a leg, the slogan is accurate. But logistically the system's a mess.

There are many ways to measure this, from those who can receive insurance reimbursement for a hospital stay but not less expensive home health care, to those given medical care that they neither want nor truly need as they approach death, leaving survivors with a sense of violation and a staggering bill from the hospital.

Mrs. Nessler's situation illustrates why there is no contradiction between being the best and being badly in need of an overhaul. Like the 300,000 other MS patients throughout the country, she was elated at the first reports of Betaseron's reduction of the frequency and severity of MS symptoms, which include a lack of coordination, tremors and impaired vision.

She was disappointed to learn that, because demand had outstripped initial supplies, she would have to enter a lottery to get the injectable drug. And finally, she was enraged to discover that Betaseron would cost $10,000 a year and that she would be ineligible for reimbursement by her insurance because she was on Medicare.

"No way I could afford it on my own," she said.

Doing a little multiplication, it looks as if $250 million worth of Betaseron will have been prescribed in the first year alone. Dr. Jeffrey Latts, vice president of clinical research and development at Berlex Laboratories, which developed the drug, says that "doesn't cover the investment" in many years of research, although he's not sure what the break-even point might be.

"I've never seen that kind of analysis," he added. He did say that the company, which has been helping people with no insurance obtain the drug, would announce a broader aid program soon.

Surely someone will say it's too bad that everyone who needs Betaseron can't get it, but that's life.

The truth is that it's too bad for all of us, and the high cost of drugs is less important than the high cost of not making them available. Socialized medicine, some still cry, but it's long been socialized, with those covered paying for those who are underinsured. American medicine is simply socialized badly, penny wise and pound foolish.

As Mrs. Nessler writes: "The National M.S. Society estimates that the average hospital stay for someone with MS costs an average of $12,000. The average person with MS is hospitalized once a year. If Medicare covered the cost of Betaseron, that's already a savings of $2,000 per person per year."

Mrs. Nessler reports several positive developments: She finally qualified for state Medicaid benefits, which will pay for Betaseron, and she's not sure she wants it anymore. There's a new drug that she's researching and she's taking steroids for strength. "I've been really lucky," she says.

But she knows others who have not: who have insurance that doesn't cover prescriptions, or that covers prescriptions but not injections. The system might save in the long run if those people were taking Betaseron today. But the long run gets short shrift as we waste time trumpeting our medical supremacy.

Anna Quindlen is a syndicated columnist.

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