Mid-Late 1990s: A Period of Action for Hemophilia Community

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Title: At Annual Meeting, Hoping To Heal Hemophiliacs’ Rift
Subtitle: Some Want Retribution For Aids; Others Want To Move On.
By: Donna Shaw, INQUIRER STAFF WRITER
Date: October 12, 1995
Source: The Philadelphia Inquirer
There is much that keeps Michael Carlin alive in the memories of his family.
There is his poetry. His music. And there is his mother, Fern Carlin, a woman determined to see something positive come from the loss of her only child.
“The first thing I had to deal with was that I wanted to die,” said Fern Carlin, of Fort Washington. “I had to figure out, why would I be here for no reason? . . . It was like I’d been catapulted to another planet.”
“Then I turned around one day and realized that I was starting to look like grief. I realized I wasn’t going to kill myself, so I’ve got to make my life as good as possible. So I joined a cause.”
Across the United States, there are thousands like Carlin – mothers, fathers, wives and other loved ones of hemophiliacs who in the late 1970s and early 1980s contracted the AIDS virus from commercial blood-clotting medicines.
Today, they and hundreds of others affected by the inherited bleeding disorder are in Philadelphia for the start of the annual meeting of the National Hemophilia Foundation.
As it has been in recent years, the meeting likely will have its share of discord. Hemophiliacs are a community divided, between those who got the virus and want retribution, and those who believe it couldn’t be helped and want to move on.
A dissident organization, The Committee of Ten Thousand (named for the number of U.S. hemophiliacs believed to be infected), now competes with the foundation to be the group’s primary representative. COTT blames the foundation in part for the AIDS tragedy and has named it as a defendant in some lawsuits, saying the foundation was little more than a marketing arm for drug makers in the crucial early period of the AIDS crisis.
In recent months, there have been attempts to heal the rift between the two groups. Both organizations, for example, are working for congressional approval of the Ricky Ray Hemophilia Relief Fund Act, a bill that would establish a $1 billion fund to compensate hemophiliacs whose blood-clotting medicines infected them with the AIDS virus. Each infected person would get a one-time lump sum of $125,000. Ricky Ray was the Florida teenager who died in 1992 after contracting AIDS from the medicine.
Still, the chasm is wide. While COTT members will attend the foundation’s convention, being held at Wyndham Franklin Plaza Hotel, COTT president Jonathan Wadleigh said his group also would hold a separate meeting in a church across the street.
Carlin is somewhere in the middle. She works part time now for the foundation’s local chapter in Glenside – but is adamant that someone will answer for the tragedy that a recent government-funded report blamed upon “a failure of leadership.”
Carlin’s son died in a coma, of AIDS-related complications, in 1993 at the age of 28.
David Krugman, 28, an Abington hemophiliac who got AIDS from clotting medicines, wants some answers, too.
Krugman, like Michael Carlin an only child, was just embarking on a career as a writer when stricken by the disease. Now he’s unable to work but spends hours at his computer and on the telephone, lobbying for the Ricky Ray bill.
Until recently, he feared to tell people about his disease and how he got it.
“Most people don’t care how I got it,” he said. “They say I deserve to die. They’ve actually said this to me on-line.”
Krugman lives with his mother and hopes for the best when it comes to the legislation and the lawsuits.
“I’m the last in line on both sides of my family,” he said. “I see my friends settling down and having children, but I’ll never have a wife or children. The government and the (drug( companies can’t just say ‘oops’ to that.”
Fern Carlin still vividly remembers her son’s first serious bleeding episode. It was in 1965, when he was a year old.
Michael cried nearly nonstop for 36 hours, and at first his frantic family didn’t understand what was wrong. The bleeding was inside a knee joint, where no one could see.
Later, standing at Michael’s bedside in St. Christopher’s Hospital for Children, Carlin was stunned at the enormity of her child’s pain. It tore her apart to think that he was doomed to suffer these excruciating bleeds for the rest of his life – and that the 2-month-old life she carried inside her might be a hemophiliac or a carrier, too. The genetic defect runs in families, the doctors had told her, but no one else in her family had had it.
So, Carlin said, she had a talk with God:
“This is my first child, and I love him dearly, but I don’t want to do this to another baby. I’ll love this new baby either way, but I’m leaving it up to you.”
Within hours, she had a miscarriage. Carlin had her tubes tied after that.
Now, Carlin says, she’s no longer at war with herself. She’s even ready to get back into a career, something she’d forsaken when her son’s illness overtook them.
“I can channel the anger, and that’s so important,” she said. “This feeling of being a victim, of being robbed, will just take you over completely if you let it.
“I would really like to make the absolute most of the rest of my life, to make it positive for myself and others. The last thing Michael said to me was, ‘Be kind. Be now. Don’t cry. We did good.’ So this is what I have to believe in.”
 *Articles and photos courtesy of Barry Haarde and Corey Dubin
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Title: Gingrich Backs Bill To Pay $900 Million To HIV-infected Hemophiliacs
By: Donna Shaw, Philadelphia Inquirer Staff Writer
Date: March 21, 1997
Source: The Philadelphia Inquirer
WASHINGTON – Invoking the memory of a King of Prussia man, House Speaker Newt Gingrich yesterday vowed to vigorously support passage of a bill that would pay $900 million to HIV-infected hemophiliacs.
“The federal government did not do the right thing,” Gingrich told a news conference on the Capitol lawn, referring to a federal report that criticized regulation of the blood industry. “This bill is a matter of simple justice.”
The Ricky Ray Hemophilia Relief Fund Act would pay $125,000 to each of the estimated 10,000 hemophiliacs who, in the late 1970s and early 1980s, contracted the AIDS virus from commercial blood-clotting medicines. An earlier version of the bill, named for a Florida hemophiliac who died in 1992 at age 15, never made it out of committee last year.
The new bill, which Gingrich vowed to push to the floor for a vote by the full House, contains significant changes. Among them: a new section that would prevent the government from treating the proceeds of a pending class-action settlement as income when determining hemophiliacs’ eligibility for Medicaid and other benefits. The hemophiliacs are suing four manufacturers of clotting drugs, made from the pooled plasma of thousands of donors.
Another change: The legislation has been recast as “compassionate” rather than “compensatory,” to satisfy lawmakers who did not want the government blamed. The U.S. Food and Drug Administration was the agency responsible for ensuring the medicines were safe.
The compromise comes as lawyers for hemophiliacs are finding new evidence that the FDA did not stop manufacturers from using the plasma of high-risk donors in hemophilia products – even after the U.S. Centers for Disease Control published a July 1982 report linking tainted blood-clotting drugs to AIDS in hemophiliacs.
In an August 1982 memo discovered recently by the lawyers, an FDA official describes a meeting with regulators and industry officials at which they discussed four units of plasma that were collected from an AIDS patient for his hepatitis antibodies. The units were pulled from production because they had thawed during shipping, the memo states.
The memo says that under “usual circumstances,” the plasma would have been pooled with other units collected for immune globulin. From there, the portion of plasma used to make hemophilia medicines “would have been removed and pooled” with material “from ordinary plasma pools” used to make clotting medicines.
Donors at high risk for hepatitis and other diseases were recruited by industry because their plasma was a rich source of antibodies used in immune globulin and diagnostic products, as well as for research.
An FDA spokesman said the agency would not comment on the memo while the matter is in litigation.
At yesterday’s news conference, Gingrich said he decided to push the new Ricky Ray bill after receiving a visit from the brother of a King of Prussia hemophiliac, Michael Burke, who died last month.
Burke’s brother, Ed, visited Gingrich two days after Michael Burke died and pleaded for help, Gingrich said. He said he agreed to push the bill “in honor of Ed’s brother and all the others who have died.”
Among the Ricky Ray bill’s cosponsors so far is Jon Fox (R., Pa.), the Montgomery County congressman who represents the Burke family. Michael Burke was married with two children.
 *Articles and photos courtesy of Barry Haarde and Corey Dubin