Miami Herald - Saturday, December 22, 1990
Charles Whited, Herald Columnist

"You can't imagine what these families go through," she says. "They need so much, so much counseling, services, specialized treatment."

That's what makes this new dilemma so complex.

South Florida has perhaps the largest concentration of hemophiliacs in the southeastern United States. Of 1,000 in Florida, about 400 live in this area. By a twist of fate, a large percentage is infected with AIDS virus. And yet a local government council to recommend ways to spend emergency federal AIDS funds doesn't include a hemophiliac representative.

Result: frustration.

But that, too, is an old story.

For centuries, hemophiliacs, whose blood won't clot normally, faced disaster from a shaving nick. Almost exclusively males, all they could do was take transfusions and hope the bleeding would stop.

The 1970s brought a miracle: a clotting substance, derived from plasma. "For the first time," Warner tells you, "people began to live nearly normal lives."

There was a fatal flaw, however. The plasma came from commercial blood bank donors, in every walk of life.

AIDS infected the vital pool.

Between 1976 and 1985, thousands of hemophiliacs, many of them family men, were taking their clotting factor and living what they thought was a miracle deliverance.

And they began to contract AIDS.

Today, clotting factor for the nation's 20,000 hemophiliacs is said to be cleansed by new laboratory processes. But great numbers of men who took it during those years are infected.

A study of 100 in Miami found 95 percent HIV positive, and nearly 20 percent of their wives, and 2 to 3 percent of their newborn children.

Miami has long been a center for hemophilia treatment. One of the first U.S. clinics was started here in 1963 by civic activist Ellen Wynne. Today, there are two clinics associated with the University of Miami, for adults and children, with 250 adults registered and 120 in active treatment annually.

Dr. Mireille Tribie, clinic physician, spells out the new realities: "Ninety to 95 percent of the adult patients we see are HIV positive, and many have full-blown AIDS. The public is unaware of the agony of these families."

Suddenly, they need a vast new range of help, including counseling in how to deal with this new nemesis, from facing AIDS to changing sex practices.

This year, Congress passed an $86 million emergency relief measure to combat AIDS, the Ryan White Act. It's named for a young Indiana hemophiliac whose courage gripped the nation as he died of AIDS from clotting factor.

Funds go to 16 hard-hit U.S. cities having 2,000 or more AIDS cases. New York leads. Miami ranks seventh, with an initial grant of $1.8 million to expand AIDS care. A 24-member local policy-making council is composed of AIDS patients and officials of agencies.

Miami hemophiliacs aren't included.

Partisans are fuming. Warner, president of the Tampa-based Florida chapter of the National Hemophilia Foundation, called the omission "unthinkable" and protested to Dade Mayor Steve Clark and Commissioner Larry Hawkins, chairman of the Committee on Health and Human Services.

Hawkins contends hemophiliac interests are served by council representatives of Jackson Memorial Hospital and the Florida AIDS Network. Ellen Wynne counters that Jackson has too many other problems to bother with hemophilia clinics. Meanwhile, national hemophilia interests worry that as Miami goes, so go councils in other cities. With things simmering, Hawkins pondered the bottom line as communities like ours try to meet explosive costs of health care. In Dade, AIDS alone is a rising monster; $1.8 million will hardly make a dent.

"We have more needs," he said, "than we have dollars."
901222
MH901208

Always watch for outdated information. This article first appeared in 1990. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1990. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .