San Francisco Chronicle - TUESDAY December 5, 1989
Randy Shilts

"I just get so worried that one of these times the hospital is going to say, 'We won't admit him -- it costs too much,' " said Hoots, an associate professor of pediatrics at the University of Texas who works with the Gulf States Hemophilia Center.

Hemophilia has always been an expensive disease, but new medical advances have driven the cost of treatment so high that some medical centers are on the verge of leaving hemophilia care altogether.

The chief reason for the surge in cost rests with the new Factor VIII products now on the market, which are the result of advances in monoclonal antibody technology that creates much safer treatments.

They also are extraordinarily expensive. The original, heat-treated Factor VIII typically cost about 9 cents a unit but firms now charge between 45 and 90 cents a unit for the new monoclonal products.

An infusion of 2,000 units, therefore, has a $1,800 price tag. And some severe hemophiliacs infuse that much as often as four times a week.

INSURANCE LIMITS

Because most insurance policies carry a $1 million lifetime limit, hundreds of patients across the country are nearing the maximum amount they can be reimbursed for. Some are preparing to quit their jobs and go on welfare so they can qualify for Medicaid.

The impact on care facilities has also been severe. Because a patient may require many thousand units of factor for the simplest of procedures, the hospital bills can be enormous, usually far beyond what either private or government insurers will pay for.

A hemophiliac in the hospital for AIDS-related pneumonia, for example, can be reimbursed only at a rate set for all pneumonia patients. The hospital, in turn, may not get reimbursed for the Factor VIII it must prescribe to keep the patient from bleeding to death during a simple biopsy.

Because hemophiliacs are treated at only a handful of hospitals around the country, these regional centers face an enormous burden.

HOSPITALS BALKING

"We've got a real threat to break the bank," said Dr. Louis Aledort, director of the Hemophilia Center of Mount Sinai Medical Center in New York City. "The hospitals are beginning to balk because they say, 'Why should we eat this price?' "

When National Hemophilia Foundation spokesmen prod pharmaceutical companies to reduce prices, they say the firms have threatened to stop distributing Factor VIII in the United States.

In fact, months before the new monoclonal products were about to be introduced last year, several major manufacturers simply stopped producing their heat-treated versions of Factor VIII, creating a nationwide shortage of the treatments.

Some experts suggest that the shortage was the result of an industry conspiracy to force hemophiliacs to pay the increased prices. Pharmaceutical companies argue that they could not risk the legal liability of selling the heat-treated product when they were on the verge of releasing a healthier monoclonal factor.

Now, the pharmaceutical companies are preparing the next generation of concentrates using recombinant DNA technology -- a process that should provide even safer products at even higher costs.

"It's going to be at least $1 a unit," said Dr. Marion Koerper, medical director of the Hemophilia Center at the University of California at San Francisco. "It causes that much more despair, because we just don't know where the money is going to come from to pay for this."

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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