Miami Herald - Tuesday, November 18, 1997
Liz Doup, Herald Staff Writer

Instead, like thousands of hemophilia patients across the country, Lee became infected with HIV through the injections of clotting factor. At 17, he developed AIDS.

Since his deadly illness was diagnosed, Hesselbacher's parents, Peggy, now 52, and her husband, Ron, 57, a Pembroke Pines TV repairman, have prayed, protested and peppered legislators, newspaper editors and even celebrities with letters. They wanted someone -- anyone -- to hold health-care companies that sold the contaminated blood products accountable.

Now, Lee, 24, is among the first of Florida's roughly 500 hemophilia patients to receive a settlement -- $100,000 each -- from the four health-care companies that agreed to end a class-action lawsuit last year by paying $600 million to 6,000 people nationwide who contracted the AIDS virus from contaminated blood products, or their families if they have died.

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"It still isn't enough," Peggy Hesselbacher says. "What amount of money can possibly make up for a life?"

For the Hesselbachers and others, the battle -- and the grieving -- are far from over.

The Ricky Ray Hemophilia Relief Fund Act, named for the Central Florida boy who died of AIDS at 15 in 1992, lingers in Congress. It seeks compensation for hemophilia patients from the U.S. government for its role in allowing the tainted blood products to be distributed in the 1980s, before blood banks began routine testing for the virus.

And last week, for the first time in South Florida, a group of hemophilia-related organizations held a memorial at Florida International University's North Miami Campus for hemophilia patients who have died. Family members displayed a blue quilt they'd stitched with the faces of loved ones -- sons, brothers, husbands.

The location was appropriate. About 40 percent of Florida's 1,000 hemophilia patients live in South Florida. And the timing was apt. Roughly 50 percent of this country's 20,000 hemophilia patients -- 80 percent of those with severe cases -- were infected with HIV.

In the grimmest of ironies, the miracle treatment made from proteins taken from blood plasma that gave people with hemophilia a near-normal life, free from constant worries they might bleed to death, has now killed more than 4,000 of them, their sexual partners and their children, infected in the womb.

Among them:

* Earvin Gaynor, a gentle, artistic boy who dreamed of being an architect but died at 17 in 1989 before he could finish school at Miami's Norland High.

"He never got to grow up and be what he wanted to become," says his mother, Mary Gaynor, 45, a nursing assistant from Opa-locka who brought the high-school yearbook Earvin didn't live to see to the memorial at FIU. "He never had the chance to be married. I'll never see grandkids by him."

* And Merlin Dawson, a Davie exporter who died at 45 in 1991. He never lived to see his son James, now 21, graduate from high school and go on to college.

"There were many times I wanted to take these [settlement] forms and write, `Keep your $100,000 and give me back my brother,' " says Calvin Dawson, Merlin's brother, who is executive director of the Hemophilia Foundation of Greater Florida, who remains bitter toward the companies that sold the tainted blood products. "What they sold was a death penalty for anyone who took it."

Still, more than 90 percent of the hemophilia patients infected with the AIDS virus approved the settlement proposed by the companies that sold the contaminated blood: Baxter International, Armour Pharmaceutical/Rhone-Poule nc Rorer, Bayer AG and Alpha Therapeutic Corp. Though they did not admit liability, the companies agreed to pay those who contracted the virus between Jan. 1, 1978, and June 30, 1985, when a blood-screening test for the AIDS virus began and safer heat-treated products became readily available.

"It's something," says Lee Hesselbacher, a soft-spoken man who is more at ease letting his mother speak for him. "At least, I can get something with it."

His first purchases: some Nintendo games and a $5,000 computer for playing more games.

Unlike Gaynor and Dawson, his health remains so good, even with AIDS, that his doctor recently told him: "Well, you didn't die. Now, what are you going to do with your life?"

A difficult life

Hesselbacher has lived a purposely sheltered life. Diagnosed with hemophilia at age 4, he was different from other children even before he tested HIV-positive. He has never hit a home run, or held a job, or gone on a date. Physically unable to continue 10th grade at Hollywood's McArthur High, he finished his high-school education at home, listening to teachers lecture over a speakerphone in his bedroom. It took an extra two years, his schedule broken by bouts of AIDS-related illnesses. He didn't go to his graduation, nor know anyone in the class.

Four years ago, Hesselbacher carried a scant 103 pounds on his 5-foot-4 frame. Endlessly tired and listless, he spent his days in a recliner watching TV. His family held out little hope for him.

"Bury me here," he told his mother as they were driving by a cemetery near their home, "so you can wave to me when you drive by."

But today, with a steady diet of improved AIDS drugs, Hesselbacher has grown two inches taller and weighs 146 pounds. He's earned his learner's permit to drive, though he's leery of tackling South Florida traffic. And the prospect of going to college and mingling with people around his own age -- now a possibility -- still makes him uneasy.

"He was robbed of some very important years," Peggy Hesselbacher says. "Years where you learn to make friends and socialize."

Moving on

Like many families, the Hesselbachers agreed to the settlement to close a tragic chapter of their lives. And because they took a practical view.

"They could have kept us in court for years -- forever," Ron Hesselbacher says.

Seven years have passed since the death of Ryan White at 18, the first HIV-infected hemophilia patient to attract major headlines.

And a year has passed since a federal judge approved the court settlement. Though the identity of those getting the money is confidential, various estimates put the number of checks mailed nationwide so far at just 300 to 750.

"Every week, I get complaints," Dawson says. "[The attorneys] keep asking for more information and different documents that they could have asked for early on."

One woman needed to open her dead husband's estate, costing her $4,500, he says. Another family had to retrieve medical records at a cost of $2,000. To Dawson and others within the hemophilia community, the long wait seems like a delaying tactic.

It's not, says Guy Esnouf, spokesman for the four blood-products companies. The checks started going out in mid-October. More will be sent by year's end, he says, though claims with complications -- proof of eligibility or complications with Medicaid and insurance companies -- may take longer.

"It seems like a simple, straightforward thing -- getting the money to the people -- but it's been a very complicated process," Esnouf says.

For the past year, the blood-products company attorneys were mired in negotiations with all 50 states to settle previous Medicaid and private insurance claims. In addition to the $600 million for hemophilia patients, another $30 million is earmarked for private insurance companies and the U.S. government for Medicare and Medicaid payments for HIV-related treatments. Still another $40 million is earmarked for lawyers and administrative fees.

And the litigation isn't over yet. About 550 people opted out of the class-action suit. An estimated 400 cases are still pending in federal and state courts.

Evaluating risk

This bittersweet ending -- and the lingering distrust and anger -- is rooted in history. As early as December 1982, two blood industry employees wrote memos urging caution about the safety of the blood supply. But other company officials argued that scientific evidence about the newly discovered HIV virus wasn't conclusive. The National Hemophilia Foundation continued urging people to use the clotting factors. The reasoning: The risk of life-threatening bleeds, though only 5 percent, was considered a greater risk than that of contracting the HIV virus.

But by 1982, many believed that the government, the blood industry and the National Hemophilia Foundation knew that tainted blood products and the new fast-moving, fatal epidemic were somehow related. Yet, warnings linking blood products and AIDS didn't appear on package inserts until early 1984.

Undoubtedly, some hemophilia patients, especially those considered "severe" who might inject multiple treatments weekly, were infected before the epidemic became apparent. The rest were likely infected by 1985.

People with hemophilia lack certain proteins essential for making the blood clot. External bleeds can be controlled with pressure, but spontaneous internal bleeding, if untreated, can cause severe crippling and, in extreme cases, death.

For years, treatment was time-consuming and complicated. Internal bleeds meant hospital trips for transfusions of blood plasma, which contained the missing factors. The plasma, frozen for stability, took time to defrost, time to infuse, drop by drop. Surgery was dangerous, travel difficult and a normal life nearly impossible.

By 1972, the clotting factors, made from proteins taken from blood plasma, became available in highly concentrated, freeze-dried form. A hemophilia patient mixed the powder with liquid and injected it, like a diabetic injecting insulin.

Suddenly, the treatment was quick, easy, portable and, it seemed, safe. Doctors prescribed it not only for obvious bleeds, but as preventive therapy.

But to make a single dose of the clotting factors, protein was culled from as many as 20,000 donors. The resulting risk of contamination -- from hepatitis as well as AIDS -- was incredibly high.

"We paid a terrible price for this," Peggy Hesselbacher says.

But now, she and her husband say they look ahead with more hope than they dared a few years ago. Their son has his settlement, and they have their son.

Says Peggy Hesselbacher: "We're thankful for every day he's alive."

CAPTION: photo: Peggy and Ron Hesselbacher with their son Lee who has Treatments for hemophilia infected (a), Mary Gaynor displays a photo of her son, Earvin who died of AIDS (a), Ron Hesselbacher (a)

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