2000s: Living with a Bleeding Disorder

 
In the early 2000’s, the divide in the hemophilia community between the HIV/AIDS-era families, post-heat treated, and recombinant factor using families slowly begins to heal. The community sees a resurgence in families coming together through camps, local, and national meetings. The term “hemophilia” begins to be replaced by the term “bleeding disorders” to acknowledge all bleeding conditions.
Treatment costs continue to rank among the most expensive chronic conditions. The financial burden of living with bleeding disorders is felt in lifetime caps and out-of-pocket expenses. In 2007, the Joint Outcome Study is released showing that prophylactic treatment is favorable to on-demand treatment in reducing joint and life threatening bleeding in pediatric patients. By the mid-late 2000’s, increased attention is being payed to women with bleeding disorders, and the development and prevention of inhibitors in hemophilia. The passage of the Affordable Care Act in 2010, assures those living with hemophilia cannot be denied for pre-existing conditions and that most plans eliminate lifetime cap issues. Future treatment includes the development of new clotting medications and gene therapy. Quality of life is dramatically improved for most living with hemophilia and life expectancy is nearly the same as most healthy people.
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Title: A legacy of tainted blood
By: Eileen Blass
Date: July 11, 2006
Source: USA Today
Like many young men, Joshua Lunior is searching for his dream girl. He knows she won’t be easy to find, because Lunior, 24, comes with some challenging baggage.
He belongs to an all-but-forgotten generation of 10,000 people with hemophilia who contracted the AIDS virus, HIV, from the clotting factors they need to stop their bleeding.
What’s more, he’s open about it. “I could be sitting right next to you and you’d never know if I choose not to tell you,” he says. “But I can’t hide behind the fact that I look healthy. It’s part of my life.”
Nearly 25 years after AIDS was first reported in hemophiliacs, the world’s focus has shifted elsewhere. Ryan White and Ricky Ray, the American teenagers with hemophilia who became famous for battling AIDS discrimination, have died. But the struggle isn’t over for Lunior and others like him.
Their survival still depends on clotting factors, which are now heat-treated or genetically engineered to be virtually virus-free and cost up to $200,000 a year, plus HIV drugs that cost an additional $16,200 a year.
“Even with these great drugs, there are still people dying,” says Patricia Lunior, Joshua’s mother.
Her worries aside, Joshua Lunior is focused on living, not dying. His health is holding, thanks to his treatment. He has finished a year of graduate school and hopes to become a school guidance counselor.
He speaks on HIV prevention whenever possible, most recently by visiting college campuses with a group of young people called Hope’s Voice. His dream is simple: He wants to lead a normal life.
“It’s ridiculously hard,” he says.
Hemophiliacs who have HIV are victims of a tragic miscalculation by federal regulators, the leading hemophilia advocacy group and the companies supplying human clotting factors, according to a 1995 analysis by the National Academy of Sciences’ Institute of Medicine.
During a five- to six-year period in the early ’80s before doctors figured out what was causing the strange disease that had turned up in California, New York and Florida, HIV quietly made its way into the blood given to people who need transfusions and the clotting factors that combat hemophilia, which occurs mostly in men.
Despite mounting evidence that AIDS was spreading among hemophiliacs, the agencies did not act quickly enough to prevent the spread of HIV, hepatitis C and hepatitis B through blood and blood products, the report found.
By the mid-1980s, about 10,000 hemophiliacs were infected with HIV. Many passed the virus on to their wives, who could then infect their children. About 5,000 people with hemophilia and HIV have died. The result was one of the biggest medical disasters ever.
“It was devastating for this community,” says Neil Frick of the National Hemophilia Foundation.
The hemophilia community still echoes with stories of families who have been hollowed out by HIV. “We just lost a 27-year-old,” says Patricia Lunior, who keeps in touch with other hemophilia families. “A whole generation is dying off. It’s just tragic.”
Legal repercussions in the USA were widespread. Thousands of hemophiliacs filed lawsuits. The government and drug firms that produced the tainted clotting factors resolved the complaints by offering payouts of $100,000 or more to thousands of hemophiliacs and their families, including the Luniors. Criminal courts in France, Japan, Germany and Switzerland convicted government officials, regulators and drug company executives of a variety of charges, though few people went to jail, according to news reports.
The wounds are fresher in Canada. Just weeks before the 16th International AIDS Conference opens in Toronto on Aug. 13, several cases collectively known as “the blood prosecutions” are still underway in criminal courts, says Brendan Crawley of the Ministry of the Attorney General for Ontario.
The Canadian Red Cross also has suffered from its actions during that era, Crawley says. The agency has pleaded guilty to offering “adulterated blood” to transfusion recipients and hemophiliacs, he says.
“The Red Cross is no longer in the blood-distribution business,” he says. “It is focusing on international charity work.”
Lunior’s diagnosis
Joshua Lunior was born on Aug. 5, 1981, two months after doctors reported the first cases of a strange disease circulating among gay men in Los Angeles. Doctors diagnosed his hemophilia when the bleeding from his circumcision wouldn’t stop. By July 16, 1982, federal epidemic experts reported that the mystery disease had surfaced in three hemophiliacs, raising new questions about how it was transmitted.
When Lunior was 1½, he had a second crisis: Blood vessels in his brain began to leak. Doctors flooded him with clotting factors. At the time, these factors were extracted from the pooled plasma taken from thousands of donors. It would be four years before manufacturers would begin heat-treating the pooled plasma to kill viruses.
By December, a report of transfusion-associated AIDS in a San Francisco baby led researchers to conclude that the pattern of infection “strongly suggested” that blood and blood products spread AIDS, according to the Institute of Medicine report.
Still, the National Hemophilia Foundation advised patients not to panic and to continue using their clotting factors “as prescribed.” Families with hemophilia heeded the advice. “I wasn’t worried,” Patricia Lunior says. “No one in our hemophilia organization said we needed to worry.”
In 1985, the HIV test hit the market. When Joshua was 4, he was tested as part of a study of people who got blood products. His parents were shocked by the positive result. “By then, Ryan White was in the news,” Patricia Lunior says, “but I didn’t think (HIV) was something we’d have to face.”
When Joshua was 6, his parents decided to tell him he had HIV. “We made up a little story. Then we had to tell him not to tell anybody,” she says. “There was a lot of discrimination. We felt like lepers.”
He began a monthly pilgrimage from Accord, N.Y., to the National Institutes of Health in Bethesda, Md., to take part in the first studies of pediatric AIDS treatment. It’s a trip he would make for 14 years until the program was phased out this year. The experience also transformed life for his mother.
“They had support groups there,” Patricia Lunior says. “I could be with other families that had infected children. Even though I wasn’t used to being able to talk about HIV, because I was still being secretive, I would cry and cry listening to the stories.”
In the early ’80s, when Joshua was 8 or 9, the family attended a weekend retreat called “AIDS, Medicine and Miracles” in Rhinebeck, N.Y., organized by some Boulder, Colo., health workers. The retreats drew from the teachings of Bernie Siegel, popular author of Love, Medicine and Miracles. They introduced the Luniors to an ad-hoc family they’ve treasured since.
“Gays, drug users, people who had been in jail, a really mixed population,” Patricia Lunior says. “We were the only ones with hemophilia and they just took us in. They made us feel loved and accepted. It didn’t matter who had the virus or how it got into your lives. We knew the devastation it causes.”
Health problems, and fear
Joshua faced other health issues as well. He suffered from internal bleeding that damaged his right ankle, forcing him to wear an inflatable cast. He took HIV drugs on such a strict timetable that he had to be awakened at midnight. One drug gave him fevers. Another gave him kidney stones. He wrestled with learning difficulties from his brain hemorrhage that make it hard for him to put words on paper.
He tried to steer a safe course between his desire to be open about his plight and fear of the consequences, mindful that an arsonist set fire to Ricky Ray’s family home. He struggled to make friends. “Growing up, most of my peers didn’t accept me, because they knew of my health challenges. I became a scapegoat in class,” he says.
‘Front page’ news
At 12, he made a momentous decision. He appeared on The Phil Donahue Show as the youngest of nine young people with hemophilia and HIV. “It went bigger than I thought,” he says. “I found myself on the front page” of the local newspaper.
Buoyed by the response, he began touring local schools and talking about AIDS prevention to other students. By high school, he had formed a network of friends, had his first taste of alcohol and reveled at his first New Year’s Eve party. And he was able to do this and stay “very public.”
Despite his learning problems, he graduated from high school a tenth of a point shy of making the honor roll. He was admitted to the State University of New York at Oneonta, where he met a bright and upbeat young woman named Jensen Schneider, now 20, who would become a close friend.
She remembers that at his graduation, his friends and relatives were touched that she was close to Lunior. “I remember wondering why they were so surprised,” Schneider says. “I still find it surprising that people would be afraid to be friends, or more, with someone just because they have HIV.”
She says – and Lunior agrees – that he’s gun-shy about pursuing relationships with women because he risks rejection when he has to disclose that he’s HIV positive.
“You can’t casually date someone if you have HIV,” Schneider says. “I think he’s afraid he won’t find that person who will be OK with it, and it prevents him from putting himself out there to them.”
Says Lunior: “In a sense, it’s ‘Why try?’ “
Now a student at Hunter College in Manhattan, he spent the first part of his summer vacation hiking in Yosemite with his father. He’ll spend much of the rest volunteering at camps for children with HIV, and then it’s back to school.
Whether or not he finds a soul mate any time soon, he holds out hope for an even bigger triumph.
“AIDS killed a lot of my friends,” he says. “I can persevere and prove that it can’t get all of us.”