BY B.G. GREGG
The Cincinnati Enquirer
David Grandstaff contracted HIV from a blood product his doctor told him to use.
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The year was 1982, and David Grandstaff's knee was slowly swelling with blood. That's not uncommon for hemophiliacs; internal bleeding into joints comes with some of the slightest bumps and bruises.
Mr. Grandstaff called his doctor to ask for something to alleviate the pain. Office personnel asked why he wasn't using his Factor, medicine made from blood to help clot his blood.
"I had read an article in a magazine about a new disease that had been hitting homosexuals and IV (intravenous) drug users in some of the bigger cities, like New York, L.A. and Miami," Mr. Grandstaff said. "And at that point there were three hemophiliacs who had contracted this same syndrome and died from it. They thought it was possible it was transmitted through the blood supply. At that point, I stopped giving myself the clotting Factor."
Mr. Grandstaff's doctor convinced him that he needed the clotting medicine and that there was no real evidence the yet-unnamed disease was being transmitted through blood. Mr. Grandstaff began using his Factor again.
It was a decision that will prove fatal. A few months after starting back on the Factor, Mr. Grandstaff received a letter informing him that his batch could have been contaminated with a virus. A few years later, he would learn that he was one of at least 7,500 hemophiliacs -- 70 to 90 percent of the nation's hemophiliac community at the time -- to contract HIV from tainted blood during a period of the 1980s when government controls over the blood supply were lax, according to a report from the Institute of Medicine.
More than 15 years later, the federal government is poised to pay the victims of that mistake.
The Ricky Ray Hemophilia Relief Fund Act is named for a Florida hemophiliac who contracted HIV during treatment and died from AIDS in 1992 at the age of 15. It will provide $750 million to the hemophiliacs who contracted HIV from July 1, 1982, to Dec. 31, 1987. That's the period that the Institute of Medicine determined the government knew blood was most likely tainted with hepatitis and the new virus, but did not warn hemophiliacs, recall blood products or take extra precautions to screen donors.
The federal compensation is, indeed, "blood" money.
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ABOUT HEMOPHILIA
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Hemophilia is a hereditary disorder in which blood does not clot because it is missing a protein, either Factor VIII (Hemophilia A) or Factor IX (Hemophilia B).
Hemophilia is found mostly in men; women with the faulty gene are most often carriers who do not suffer from the disease. Some people, through genetic mutation, become hemophiliacs without prior family history.
There are about 17,000 hemophiliacs in the United States.
Hemophiliacs are intravenously treated with clotting concentrates. They can receive treatment on demand (when necessary because of bleeds), or receive regular treatments (prophylaxis). Some mild hemophiliacs can receive a special medication through their nose. The amount of Factor medicine a hemophiliac needs is determined by body weight. Factor costs about $1.20 a unit. A 150-pound man will receive about 1,750 units in a treatment, and about 15 treatments a month. That means he will spend about $378,000 a year on treatment. |
"I'm angry at the government and the drug companies for letting this happen," said Mr. Grandstaff, 44, a Clermont County man with a wife and two adult children. "There's no amount of money that's going to bring somebody back. The only thing the money is going to do is give some economic security to their survivors."
While some who were in charge of protecting the nation's blood supply in the early '80s say it was impossible to guard against something they didn't know existed, many in Congress, including House Speaker Newt Gingrich and Ohio Sen. Mike DeWine, and a federal study, have said the government could have done much more.
And many claim increased safeguards -- such as those called for in the Ricky Ray Act -- are needed to ensure it does not happen again.
It is too late for Mr. Grandstaff. It is too late for Ricky Ray. But it is not too late for the next generation of hemophiliacs.
"The federal government has the unique responsibility for regulating the safety of blood products used in the United States," said Mr. DeWine, R-Ohio, who is shepherding the Ricky Ray bill through the Senate. "The government failed to fulfill that responsibility."
About the bill
Every hemophiliac, or a surviving family member, infected with AIDS from July 1, 1982 to Dec. 31, 1987 will receive $100,000 if the Ricky Ray Act is passed.
Some estimate the number of hemophiliacs who contracted HIV to be much higher than 7,500, figuring many were so afraid of the stigma of AIDS that they died with the secret.
Linda Young, executive director of the Greater Cincinnati - Northern Kentucky chapter of the National Hemophilia Foundation, estimates 125 residents in the Cincinnati area will receive payment if the bill is passed.
The key word is "if."
"It was meant to assist with the cost of care, but now it is a survivors' bill," said Detrice Barry, a Forest Park woman who comes from a family of hemophiliacs and watched her father die after being infected with tainted blood. "The government is dragging its feet while one or two people are dying each day."
It is estimated that 5,000 hemophiliacs infected with tainted blood have already died.
While the Ricky Ray Act was introduced to the U.S. House of Representatives in in 1995, it passed in March. It is now in a Senate subcommittee -- and already in trouble.
Sen. Jim Jeffers, R-Vermont, attached an amendment that calls for compensation to all those who received tainted blood during transfusions and contracted HIV -- about 8,000 people -- such as tennis great Arthur Ashe.
While this is perhaps the right thing to do, it pushes the bill to nearly $1.8 billion, which might make it more difficult to pass, said Patrick Collins, director of government relations for the National Hemophilia Foundation.
"We'd like to see two separate pieces of legislation," he said. "They're just as needy and just as eligible for compensation, but adding that significant number of people to the bill at this late of stage jeopardizes the bill."
One man's story
Mr. Grandstaff says anyone infected with tainted blood should receive compensation. He's already received $100,000 from a group of pharmaceutical companies that settled in 1996 with thousands of hemophiliacs. So far, 6,000 claims have been made on the $600 million settlement.
The money will not give Mr. Grandstaff the life he previously enjoyed. He immediately made out a will, signed over the cars to his wife, made sure the life insurance policies were in order and prepared to die.
In 1993, he became so ill he could no longer perform his engineering job. His wife took a job so he would have health insurance. His Factor and HIV medicines cost thousands of dollars a year.
Twice, he's been hospitalized near death.
He has watched a daughter graduate from college. His son just turned 18. But in his mind is always the question: How long do I have to live?
He wants the money for his wife when he dies. Many spouses of hemophiliacs contracted HIV through sex after their husbands received the tainted blood. Under the Ricky Ray bill, they too are eligible for compensation. Mr. Grandstaff's wife does not have the virus.
"I don't know how I would have dealt with it if I had transmitted it to her," the reserved man whispered.
He's used some of the pharmaceutical settlement to take computer programming classes -- a sign he has not given up on life.
"If my health continues to slowly improve, my goal is to go back to work," he said. "A lot of people say they'd like to retire, but having sat around for five years, I can tell you, it is no fun."
Importance of the bill
Detrice Berry's father, Roosevelt Green, died last year at the age of 58.
He contracted the virus while taking Factor. Her father infected her mother. A nephew -- one of seven grandchildren with hemophilia -- also was infected with tainted blood while receiving treatment in the mid-'80s.
But they are not Mrs. Barry's only motivation in pushing for the Ricky Ray bill. She points to her sons, Tony, 1, and Drew, 3, and the regular treatments of synthetic Factor VIII pumped into their chest to help their blood clot.
"If there is anything wrong with the blood supply, you'll know by the hemophiliac community, because we're the ones who start dying," she said. "We're the canaries in the coal mine."
That was certainly the case in the 1980s. According to the Institute of Medicine, which was asked by Congress to investigate whether the government was culpable in the spread of HIV, hemophiliacs were some of the first to be infected with HIV and hepatitis through tainted blood products.
The institute found that the government ignored recommendations from the Centers for Disease Control in 1983 to better screen donors at blood banks. The report also found that the government did not require heat-treating of blood at an early enough stage -- most likely because of its cost -- and that it failed to recall tainted plasma that was collected, unscreened, from high-risk populations such as prisoners or those in low-income neighborhoods.
Finally, the Institute of Medicine found that, despite evidence the blood supply was tainted, the federal government did not warn hemophiliacs of the risk to their health.
In effect, the report said, the Food and Drug Administration "did not adequately use its regulatory authority and therefore missed opportunities to protect the public health."
Factor is made from plasma. According to Dr. Ralph Gruppo, director of hemophilia treatment at Children's Hospital Medical Center, one batch of plasma is made from the blood of 1,000 to 20,000 donors -- so the risk of infection was tremendous.
Yet, without the Factor, hemophiliacs could bleed to death. "It wasn't real clear what to do," Dr. Gruppo said. "The risk of hemorrhaging was greater than the potential risk of HIV."
But Mr. DeWine said it is very clear from the institutereport that the federal government could have taken several steps to safeguard the nation's blood supply, but failed to do so.
Dr. Thomas F. Zuck, director of Hoxworth Blood Center, was the head of the Food and Drug Administration's blood products division during the time in question. He called the Institute of Medicine report "balderdash."
Dr. Zuck said the IOM is Monday-morning quarterbacking, and that there is nothing the government could have done. He has testified before Congress on the issue.
"This is a no-fault situation," he said. "It would have been impossible to screen out a disease you didn't know existed."
He said the Ricky Ray bill is bad precedent because many diseases are transmitted through blood. The government, he said, is putting itself in a situation where others infected with diseases such as Hepatitis C might seek payment.
He said despite increased safety measures, it is still possible for a new blood-borne disease to pop up.
"There are better things in place, but to say it could not happen today would be foolhardy," he said.
Indeed, blood is recalled frequently. In 1997, blood was recalled six times because of the threat of Creutzfeldt-Jakob disease, otherwise known as mad cow disease.
On Christmas Eve 1995, Mr. Grandstaff received a letter from University Hospital that said a recent shipment of Factor he had used could have been contaminated with the mad cow bacteria.
"It sent a cold chill down my spine," he said, recalling the 1983 letter. "I had already used the Factor. The letter didn't come until a year and a half later. So something like this can happen again."
The Ricky Ray bill calls for tighter controls over the blood supply, including smaller pools of donors.
Mrs. Barry said preventing future infections is the most important reason to pass the Ricky Ray Act. She recently joined an empowerment program, the Ohio Parent and Information Resource Center, to learn lobbying skills. That led to a rally at Children's Hospital Medical Center where hundreds signed a banner in support of the bill, and a trip to Washington, D.C.
"When my dad was dying, he said, "There's no need in being angry, I want to focus on doing something so that this doesn't hurt my grandsons' " Mrs. Barry said. "That's all I'm doing. I'm fighting for my two children; protecting the blood supply of the future."
