HIV-positive hemophiliacs get own clinic

March 11, 1994|By Holly Selby | Holly Selby,Sun Staff Writer

A new medical clinic for HIV-positive hemophiliacs -- a symbol of recognition to many of its patients -- opens today at Johns Hopkins Hospital.

The aim is to provide comprehensive health care to adult hemophiliacs in Maryland who were infected with the human immunodeficiency virus by the blood products meant to help them. The clinic will be staffed jointly by personnel from Hopkins and St. Agnes Hospital.

"This may be a small clinic, but it's a major thing for these people, and it's long overdue," said Annette Maurits, president of the Maryland chapter of the National Hemophilia Foundation. The state chapter has about 200 members.

Hemophilia is a genetic condition that affects the blood-clotting process, leaving people who have it vulnerable to painful internal bleeding. To combat those "bleeds," hemophiliacs receive intravenous injections of a manufactured clotting factor. A single dose comes from the donated blood of as many as 22,000 people.

Today, half the 20,000 hemophiliacs in the United States are HIV positive -- infected by the blood products prescribed for them. They were infected from 1979 to 1985, the year when testing began for HIV contamination in the blood supply.

How many of the approximately 400 hemophiliacs in Maryland are HIV positive is not known, said Elizabeth Holloman, state hemophilia coordinator.

The clinic at Hopkins makes one-stop treatment easier to obtain. Otherwise, to get their care in one medical center, Maryland patients had to travel to Philadelphia, Washington or Hershey, Pa. Last summer, a comprehensive center for pediatric hemophiliacs opened at Hopkins.

The difficulty and expense of caring for an HIV-positive hemophiliac can be devastating. The cost of treatment for severe hemophilia alone can reach $100,000 a year.

In addition, many sufferers are unable to work because of the worsening symptoms of acquired immune deficiency syndrome, which is caused by HIV.

"A lot of hemophiliacs like myself are almost to the point of being bedridden," said Jim Miller of Dundalk, who quit his job as a city maintenance worker because of his illness.

"I've been to an emergency room where the doctor got out a manual to look up hemophilia," said Mr. Miller, 44. "If I get a sore or a cough -- that requires an infectious disease doctor. Bleeding requires a hematologist. It's a lot of back and forth and calling around."

Though the new clinic is starting small -- open one day a month and staffed by physicians who are donating their time -- its potential to improve the quality of life for hemophiliacs is great, Ms. Holloman said.

And patients such as Charles Robinson appreciate the symbolism of the clinic; it means their plight is not being ignored.

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