San Francisco Chronicle - Tuesday, December 5, 1989
Randy Shilts

The new Factor VIII product, he knew, would drastically reduce his exposure to hepatitis viruses -- a major development, given that liver disease is the second-highest cause of death among hemophiliacs.

But when Kurath went to ask for the new treatment, his doctor told him he would not give him a prescription.

The physician, Dr. Everett Lovrien, medical director of Hemophilia Center at the Oregon Health Sciences University, concedes that the product is "very fine medicine" but refuses to give it to Kurath, in part because he does not like the company that makes it.

The company, Armour Pharmaceuticals, has been contacting patients directly to sell the new Factor VIII. To discourage such direct marketing, Lovrien is simply refusing to prescribe much of the product.

"We don't want to lose control of our patients," he says bluntly.

Complicating the issue is the high cost of Factor VIII and other treatments in general. Lovrien says he will not give expensive new treatments to patients who, like Kurath, are HIV-infected.

SAFER TREATMENT

"If you take some patient who's HIV-positive and put them on a medication that costs $50,000 a year -- and the reason to do it is that it's safer, but they've already got (HIV) -- that doesn't make sense to me," he says. Lovrien controls financing for Oregon's Hemophilia Assistance Program, which is what pays for Kurath's Factor VIII treatments.

As for the treatment's effect on protecting immune-deficient patients from further liver disease, he says such benefits are yet to be definitely proved.

Jonathan Botelho, a hemophiliac and a staff member with the office of civil rights of the Department of Health and Human Services, said such decisions violate federal laws banning discrimination against people with disabilities, such as HIV infection.

But Lovrien says, "I don't pay attention to the law. I try to do what's logical -- sometimes that's illegal."

At the U.S. Department of Health and Human Services in Washington, Sharon Barrett, who administers the federal program that finances the Portland center, says she is "a little disturbed" by the problems patients face in obtaining monoclonal Factor VIII. "It is definitely an area I'm looking into this year," she said last week.

FEAR OF LOSING ACCESS

Many hemophiliacs say they feel restricted in their ability to protest, because they worry about losing their access to treatment altogether. Kurath is reluctant to pressure Lovrien because he is the chief of the only hemophilia treatment center within 600 miles of Kurath's Portland home.

"You don't want to sue your doctor when he's the only one who's got the medicine you need," says the computer programmer.

Lovrien's apparently capricious ill will toward Armour Pharmaceuticals has denied patients millions of dollars in free Factor VIII. He refused the company's offer of free monoclonally produced Factor VIII for his patients, saying he "doesn't believe in rebates." Patients who wanted the factor were simply refused a prescription.

To make matters worse, patients who have obtained prescriptions from other doctors often find themselves thwarted later when they ask insurance companies for reimbursement. Third-party payers often seek the advice of the region's foremost hemophilia expert before paying for the product. That expert is Dr. Lovrien, who advises them not to pay for the factor.

"You end up feeling like you're hitting your head against a brick wall," Kurath says.

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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