HIV

Pakistan Patients Test Positive

Laurie Kelley April 3, 2022

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

Laurie Kelley January 10, 2021

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.

Lest We Forget: Ryan White

Laurie Kelley April 8, 2013
This morning my friend, Barry Haarde, and many of those on Facebook reminded me what a special day it is. The anniversary of the passing of one of the heroes of the HIV/hemophilia community, Ryan White.

I recently met someone my age who had never heard of him. It seems hard to believe, given that he was a pioneer in advocacy for the rights of those with HIV, at such a tender age. And HIV in the 1980s was paramount to the plague, the Black Death, sweeping the country and causing people to react with fear, superstition and discrimination towards those who contracted HIV.

Ryan was born December 6,1971, to Jeanne White, in Kokomo, Indiana, who learned three days later that her baby had hemophilia. Treatment then consisted of factor concentrate injections which were not pasteurized or treated to remove viruses. Shortly after surgery on his left lung in 1984, doctors informed Jeanne that Ryan had contracted HIV. At age 13, Ryan was given six months to live.

What we didn’t know then and what we know now staggers the imagination. No one could have made up a sci-fi story as incredible as a microscopic virus infecting the entire nation’s blood supply and leading to the deaths of 10,000 with hemophilia. Ryan was one of them, and one of the most famous. Why?

His fame stemmed from how he handled discrimination in the Indiana school system, which would not allow him to attend classes. Ignorance about the disease caused mass panic and hate crimes. Ryan was shunned, harassed; one night a bullet was even fired into his home.

Ryan and his mother took the school discrimination case to court. Eventually, Ryan won. He was allowed to come back to school. But, people’s minds didn’t change so quickly or with the court decree. Ryan continued to face harassment by schoolmates, and parents pulled their children out of school. Ryan faced it all with characteristic grace, dignity and acceptance.

Ryan eventually found a school that welcomed him in Cicero, Indiana:  Hamilton Heights High School. He thrived there.

His story of courage found its way to the media, and Ryan became a celebrity. A made-for-TV, a biography, many television spots…. and even friendships with Elton John and Michael Jackson. Ryan was hemophilia’s earliest advocate: on March 3, 1988, Ryan spoke before the national commission on AIDS, about hemophilia, HIV, discrimination. It’s fair to say this child–a suffering child–changed the way everyone viewed HIV. He was a pioneer, a role model, and transformational leader.

He died on April 8, 1990, Palm Sunday, surrounded by Jeanne, his sister Andrea, his grandparents and his friend, Elton John. Jeanne remains fairly active in the hemophilia community and attends various events to remind us all of the importance of advocacy. Ryan’s impact goes far beyond his short time on earth, and he will eternally be remembered as a compassionate child who suffered, transformed his suffering into a mission for a greater cause, and left a lasting legacy so that others could avoid the discrimination he endured. His life is a blueprint of hope and courage in the face of alienation and pain, like so many others in our very special community.

Memorial Day of a Different Sort

Laurie Kelley May 30, 2011

Today is Memorial Day in the US, where we remember and honor those brave soldiers who fought in wars to protect our country and liberate others. It would be hard to find a family who does not have someone in it who gave their life for their country. I have at least one in my family: my uncle Jim Morrow, my father’s brother, who died in 1967 in Viet Nam. We find ways to remember our brave heroes: Jim has a place of honor on the Vietnam Wall in Washington DC, and on the virtual Wall, on line.

This week we will also remember heroes from a different war: HIV.

On June 2, PBS will at last broadcast Bad Blood: A Cautionary Tale, by Marilyn Ness. This emotional, deeply moving documentary portrays life with hemophilia before the “war,” when there was no blood clotting factor. This in itself can bring you to tears, watching children hobble about on crutches, suffering with joint bleeds, in hospital beds when they should be out in the sunshine playing. Then, the miracle of factor, and how it transformed lives from being crippled to being freed. Factor liberated all the children from this sad fate.

Who could have ever, in their wildest dreams, known that in the late 1970s a virus, unlike anything the world had ever seen, lurked in the nation’s blood supply? This is the stuff of science fiction, not reality. But it became our reality. Thousands were infected, and thousands died horrible deaths.

I know personally almost many of the heroes in the film: Dana Kuhn, Bob Massie, and Glenn Pierce. Bob says, this “is the story of a failed medical system, of companies and politicians putting profits before people, and of patients being kept in the dark about their very lives… It is the story of a critical piece of American history, when thousands of patients, doctors, and families came together to repair a broken system.”

Here is also Bob’s statement, which best expresses the heroism evident in those infected: “When I learned, more than twenty-five years ago, that my lifesaving injections had exposed me to a dangerous virus, I made the resolution to continue living each day, always staying true to myself and those I loved, and never giving up hope. I was lucky, and overcame them both with the help of world-class medical care and the love and support of my friends and family.” Bob is now running for US Senate.

But thousands of others were not so lucky. Like fallen soldiers in a devastating, insidious war, they are now remembered and honored in Bad Blood, which memorializes their struggle, their sacrifice and their legacy. Bad Blood is their local memorial park, their Viet Nam wall, their Iwo Jima monument. Clearly, their deaths, and the determined action of the survivors to seek justice and a change in the blood collection system and factor production, have made hemophilia treatments– and our entire blood banking syste–safer.

I cannot stress strongly enough to watch the movie. If you want to know the psyche of the US hemophilia community, understand its anguish and advocacy and determination, you must see this movie. If you want to see true American heroes, watch this movie. It’s not just a documentary, but a memorial to fallen soldiers.

Bad Blood is showing on WGBH at 10AM, 4PM, 6PM, and 11PM on June 2nd. Please forward and share this with your friends, family, community members, and anyone in the medical field.

Great Book I Just Read

Johnny Got His Gun
by Dalton Trumbo

You may have, like me, read this book in high school. It’s worth another read. Written in 1959, the novel was actually written in 1938 and published just after the start of World War II. This is the story of Joe Bonham, a youjng American WWI soldier who is horrifically disfigured and disabled. Told only from Joe’s thoughts and memories, Joe slowly becomes conscious and then must decipher what is happening to him. He realizes slowly he has lost all his limbs and his face; how does he cope with this horrific realization? All he has left is his skin and ears as sensory organs; he struggles to control his panicky mind.

Memories of home and family flood him; he reflects on why he went to war. Trumbo has a message, one that not all Americans in these times may want to hear. But we grow as humans when we read what we don’t always agree with; the horror of war, its terrible human cost. It can be viewed as a book about war and its effects (think of the thousands of scarred soldiers returning now; for second year in a row, the US military has lost more troops to suicide than to combat in Iraq and Afghan) or simply about the strength of the human spirit and surviving unimaginable loss in any field, at any time. This book is worth a read, though there are problems with run on sentences, grammar, etc. Two stars.

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

Laurie Kelley March 15, 2010


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]

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