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Monday, September 22, 2008

So he'd take a trip to New Zealand: Patient advocate Jonathan Wadleigh

Born with hemophilia, Jonathan Wadleigh spent part of his childhood in a wheelchair or on crutches as internal bleeding turned his young joints arthritic. He took his first steps towards years of activism by hobbling door to door on crutches to register voters.

As an adult, in 1983, Jonathan learned that some blood products he had used to help his blood clot normally were contaminated, infecting him with HIV and hepatitis C. He focused his activism on those who hemophilia whose lives would be shortened by AIDS. He was the lead plaintiff in a class action lawsuit that produced a $670 million settlement from four drug companies that made the blood products. In the late 1980s, he helped found, and served as first president of, the Committee of Ten Thousand, an advocacy group mainly for the estimated 10,000 people with hemophilia who were infected with HIV by the blood products used to treat them.

Jonathan died of liver cancer on June 4 in Boston. A brother, Robin, died of AIDS in 1985 after being infected through blood products.

Once he said to his half-sister Anne, "You know, if I didn't take my medicine, I'd be dead in three days." But, said Anne, "He lived that way. There were times when he was told he might die soon, so he'd take a trip to New Zealand. That was his response to imminent death."

He also became a mentor to others who faced death through infection by blood products. "He was a great person to empower people to find their own path. Jonathan would say, 'These are your goals and these are your skills. You have to be socially responsible, but follow your dreams,'" his wife said.

Advice: Live as actively as Jonathan.

Read another story on a blood transfusion.

Thanks to Bryan Marquard for the source article in the Boston Globe of June 14.

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