HIV

Pakistan Patients Test Positive

When the US went through in the 1970s and 80s what is now called the “Hemophilia Holocaust,” up to 10,000 patients with hemophilia died. Donated blood that was infected with HIV and hepatitis C was never tested for viruses back then. Thanks to the advocacy of the patient community, along with the help of some doctors, the nation’s blood supply was destroyed and advanced testing and safety procedures were instituted. This tragedy also led to the creation of recombinant blood-clotting products, that are not made from human plasma. The result is that HIV and hepatitis C are no longer transmitted through blood-clotting products.

So to read that 40% of hemophilia patients tested positive for hepatitis B and C and 2% for HIV during a recent mass screening was both disheartening and shocking. It happened in Karachi, Pakistan, a city I’ve been to many times, specifically to visit the hemophilia patients and advocacy groups. I had thought they had come a long way since my first visit there in 1999. Pakistan has the sixth largest population on earth, and so probably has the sixth largest hemophilia population. These results are shocking.

Even though Pakistan receives donations of recombinant factor from overseas, there just isn’t enough for everyone. Some patients must resort to using cryo from blood banks, and are at risk of contracting blood-borne viruses.

Fortunately, all 242 patients who tested positive were given the first dose of hepatitis B treatment. At least that’s something.

The local advocacy group is requesting the Government of Sindh (of which Karachi is a part) for further testing and to ensure provision of anti-hemophilia injections at Hemophilia Welfare Society-Karachi treatment center.

While the developed countries look forward to more advanced ways to deliver factor VIII, including gene therapy, most hemophilia patients around the world struggle to get any care, whether cryo or recombinant. Each month I ship out little packets of factor to patients in all corners of the earth. It seems a drop i a vast ocean, but at least it’s something. We need to support the national and local advocacy groups worldwide to carry on the fight that we once engaged in, not too long ago.

When Compassion Meets Anger

This past week we witnessed anger vented at our government like we have never seen from Americans in our lifetime. I wondered how to address it in a blog meant for bleeding disorder topics. I couldn’t ignore that it happened. I tried to focus on something positive this week. I found myself thinking about compassionate heroes: those who put themselves in harm’s way to get footage of the riots; who tried to help people who were injured; who used kinder language to soothe anger and hate.

As I was thinking of this, I recalled our own situation in 1992, when I attended my first national hemophilia meeting in Atlanta. My book Raising a Child with Hemophilia was being promoted, and I was so focused on that, and raising my 5-year-old with hemophilia and 2-year-old daughter, that I was shocked when during an interview a newscaster asked me what I thought about what was happening at the NHF meeting down the road. What was happening? I didn’t know what she was talking about. I was oblivious.

I soon found out. Stepping into the exhibit hall, where pharmaceutical companies promoted their booths, I saw protesters yelling, waving their arms, scaring people. One had red paint smeared on him and wore a death mask. They then marched together throughout the hall, banging a drum, calling out companies. It was grim. Some pharmaceutical reps fled the scene. In fact, most did. The booths were being emptied quickly.

At one booth, a lone rep stood his ground. I was standing next to him when Michael Davon, a person with hemophilia and HIV from Boston, walked up to him and began yelling. Michael was quite taller than the rep and intimidating. He threw packages of needles in the man’s face and yelled, “And your needles are the wrong size!”

I wondered what could possible happen next.

Joe Pulgliese, general manager of Armour Pharmaceuticals, the man who had the needles thrown in his face, responded calmly, “I think there are bigger issues here to talk about instead of needle size. Tell me what the problem is.”

The rage, absolute rage about being infected with HIV from contaminated blood products; pharma’s role in this; cover-ups; not being believed and not being heard; the deaths of friends and colleagues.

Laurie Kelley and Joe Pugliese 2000

By simply exposing himself to the anger, absorbing it, taking a stand and offering a listening ear, Joe calmed Michael down. They sat. I watched from the sidelines in amazement as Michael quieted but continued his list of accusations. When everyone else fled, Joe had stayed, unafraid.

I saw the power of compassion, even in the face of potential violence, and the power of listening. Angry people want to be heard. But often our first reaction is to retreat, or defend ourselves. Or even fight back. No one ends up listening. Angry people have a right to be heard. Violence is not acceptable, but not being heard and not feeling compassion can lead to heightened emotions, and even violence.

Today is Joe’s birthday, and I’m proud to say he has been a friend since 1989. He was my first contact in the hemophilia community, and he has been a friend to the community for decades. He secured funding for so many nonprofits for family programs and camps. He approved my book in 1990, when I was a complete unknown. And he works today still, overseeing the Hemophilia Alliance, which helps HTCs with funding, to keep them viable, to serve us.

Laurie and Joe a few years ago

There will always be angry people, there will always be protesters, and there will always be wrongs that need to be righted. But there aren’t many people who stand in the face of it all, look it in the eye, and say “Tell me what’s wrong.”

Happy birthday, Joe! We have been and still are blessed to have you in this community.

Safety versus Science: Do We Allow Blood Donations by Gay Males?


Remember the 1980s? For those with hemophilia, we remember fear, lack of understanding, being labeled part of the “Four-H Club”: the groups who seemed to get AIDS most predominantly were heroin users, homosexuals, hemophiliacs and Haitians. Fast forward to the Millennium and one group still seems to be held under a microscope: homosexuals. A lifetime ban was placed on homosexuals in 1983 due to the spread of AIDS through blood donations. Homosexuals were social activists and quite altruistic. They often donated blood. Before HIV was identified, their donations contributed to the spread of HIV to those with hemophilia.

So why are they still banned from donating blood? Is there a scientific or medical reason–or just plain discrimination?

Apparently 18 senators think it’s discrimination. A letter signed by all was sent to the Food and Drug Administration (FDA) last week, requesting the FDA to modify its policies on donors. They asked the FDA for the same deferral policies for heterosexuals engaged in high-risk behavior–usually a 12 month waiting period. In plain language: if you are a gay or bisexual man, you could donate blood if you have not had sex with a man in the past 12 months.

What do the nation’s blood bank organizations have to say about that? They’ve been open to changing policy since 2006. The AABB, America’s Blood Centers and American Red Cross all support a 12 month deferral. And the CDC says transmission of HIV through blood donations are extremely rare – less than 1% of all new HIV infections.

But Mark Skinner, president of the World Federation of Hemophilia, cautions that the focus should be on the safety of the recipient, not the altruistic needs of the donor. Blood-donor rules are discriminatory by design, Skinner says in the Washington Times. He noted that people with hemophilia can’t give blood, so it’s not about discrimination; it’s about scientific vigilance.

The FDA reports that homosexual males have an HIV prevalence 60 times higher than the general population, 800 times higher than first-time blood donors, and 8,000 times higher than repeat blood donors.

In a statement released February 19, the WFH stated that donation policy must be based on the Precautionary Principle, which asks that in the absence of scientific consensus, decisions must err on the side of caution. Here, not to cause any unnecessary risk to recipients of blood donations.

This is a fascinating discussion about safety and science, and one that has not ended yet. Surely it is difficult to be a gay male and not to be allowed to donate blood, which is a highly altruistic and socially conscious act. But due to our history, the hemophilia community may defeat efforts to change the current blood donation policies.

For more info, see: Washington Times – Senators ask FDA to lift gay blood donor ban
http://www.washingtontimes.com/news/2010/mar/05/senators-ask-fda-to-lift-gay-blood-donor-ban//print/[3/6/2010 10:50:41 PM]

The Passing of a Giant


It is with great sadness that I report on the passing of Jonathan Wadleigh, who deserves to be called a legend in the bleeding disorders community. Jonathan died at age 62 of liver cancer June 4. He helped found and was the first president of the Committee of Ten Thousand (COTT), an advocacy group for those with hemophilia who were infected with HIV. His passion to seek justice and inform others to be vigilant about the nation’s blood supply helped win compensation for everyone infected with HIV from clotting factor, and helped strengthen blood safety practices and law.

From an article in the Boston Globe:

“Normal people don’t think about when they’re going to die,” Jonathan Wadleigh said in a Globe interview 13 years ago, and his was not a normal life.

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

As an adult, Mr. Wadleigh learned that some blood products he had used to help his blood clot in an ordinary fashion were contaminated, infecting him with HIV and hepatitis C. This time, he focused his activism on those with hemophilia whose lives would be shorted by AIDS. He was the lead plaintiff in a class action lawsuit that, after winding its way through the courts, resulted in a $670 million settlement from four drug companies that manufactured the blood products.

“He helped make the blood supply safer for other people, but not on his own,” said his wife, Joanne Womboldt. “Jonathan would want recognition of the tragedy, where people are still suffering and dying, and recognition that scientists and people in business and government had a big responsibility to protect people. He would want people to know greed is something that should be avoided when you’re in a position of power.”

The litany of medical, emotional, and political hurdles Mr. Wadleigh confronted would have made most people despondent or furious. And yet, friends and family said, the anger remained in his words, rather than in his demeanor or the tone of his voice.

“He was one of the most charming people I ever knew,” said Mr. Wadleigh’s half sister, Anne Gibert Hook, of Lummi Island, Wash., and Manley Hot Springs, Alaska. “He was wonderful to be with – he was just fun.”

By age 9, Mr. Wadleigh was in a wheelchair. As a teenager, he struggled on crutches along railroad tracks near his home in Vienna, Va., to teach himself to walk again. And along with being infected with HIV and hepatitis C, he endured surgery to replace both knees as a result of his arthritis.

“I think his bravery in the face of his medical disabilities was totally astonishing,” his sister Gibert Hook said. “He would just quite calmly go into the hospital and have these long operations.”

In the 1960s, he moved north to the Boston area and lived for a while with his sister, taking classes at Northern Essex Community College in Haverhill, where she was teaching. He later took classes at the University of Massachusetts at Boston and Boston University, his wife said. Mr. Wadleigh became versed in computers and worked for many years in programming and marketing at hospitals, companies, and nonprofit organizations.

His brother Larry had died, at 21, in a 1965 car accident. His other brother, Robin, who also was afflicted with hemophilia, died of AIDS in 1985 after being infected through blood products.

And two years earlier, in 1983, Mr. Wadleigh had learned that he, too, was infected with HIV through the clotting factor he used to address hemophilia.

Speaking to the Globe in 1995 about the decisions drug companies and government agencies made that left tainted blood products on the market, he said, “I would say my anger, rather than diminishing, has grown, the more I have learned.”

Still, Mr. Wadleigh said, the losses he suffered and the disillusionment with government and business institutions made him cherish everything else even more.

“I have experienced the worst you can get and the best you can get,” he said in the 1995 interview. “I don’t think I could appreciate what I have and what I’ve had if I hadn’t had the bad experiences. It’s that difference that adds to the depth of life.”

Mr. Wadleigh and Thomas Fahey founded the Committee of Ten Thousand in the late 1980s. The name came from medical estimates, sometimes disputed, that one in 10,000 men are afflicted with hemophilia. In its early years, the organization said one hemophiliac died every day as a result of HIV-tainted blood products. Fahey died in 2002.

Along with leading the organization in its early years and working on the class action lawsuit, Mr. Wadleigh continued to live as vibrant a life as possible, given medical limitations.

“Once he said to me, ‘You know, Anne, if I didn’t take my medicine, I’d be dead in three days,’ ” his sister said. “And he just 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.”

Mr. Wadleigh and his wife bought land in Royalston and restored a 1760 farmhouse.

He also became a life mentor of sorts to others who faced death through infection by blood products.

“He was somebody who was a great person to empower people to find their own path,” his wife said. “Jonathan would say: ‘These are your goals and these are your skills. You have to be socially responsible, but follow your dreams.’ “

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