Dying in Vein on Easter

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Today is Easter, a time of transition; in faith, celebrating the death and resurrection of Jesus, in weather, a celebration of spring in the Northeast. It’s a time to watch the dying of winter and the coming of new life. It’s also the end of Hemophilia Awareness Month, and I want to close this special month by reading and sharing the book Dying in Vein: Blood, Deception … Justice, by Kathy Steward MacKay.

The thoughts of those who died in our Hemophilia Holocaust are never far from me; I keep photos of my friends who passed in framed photos on my bookcase at home. They’ve been there for 18 years in some cases: Michael Davon, Tom Fahey (both from the Boston area), and Dave Madeiros. I suppose this is why I was so drawn to Kathy’s book. It’s a photojournal of stories of those with hemophilia who contacted HIV. You can read it in an hour, but the photos and stories will stay with you forever.

My library of hemophilia
Holocaust books

I think this is why I keep framed photos of my departed friends; they are always there to look at, when I walk by them. But sometimes, like anything you see every day, they fade into the background, and become part of the surroundings. You don’t notice them much; you take them for granted. I do it to my photos; we all do it to the HIV community. Yes, many of those in Kathy’s book have passed on, but many are still here, struggling. We tend to forget about them, as the community is enjoying a new era in health and quality of life, but Barry Haarde’s shocking passing in February is a stark reminder that they still suffer, still carry wounds and stigma, still need us to remember them.

Remembering: Tom, Mike, Dave

Dying in Vein is beautifully written, and exquisitely photographed. Kathy is a professional photographer, and captures searing emotions and tender scenes in her book. Black and white photos are extremely powerful when done right, and render the families, the emotions, the turbulent times like a classic movie before there was color, like a work of art, and even with a nod to the purpose, which itself seems black and white: Something bad happened to good people. The book whispers “Never forget,” which is the phrase that greets you when you enter the Dachau concentration camp in Germany. Never forget.

Too young to die

I loved the portrayal of Tom Fahey, co-founder of the Committee of Ten Thousand (COTT). I knew Tom personally and attended his funeral. I was able to speak with him on numerous occasions to learn more about what it was like to have hemophilia and HIV, to understand his mission to bring justice to those who contracted HIV through their actor. Tom was not militant; he was a gentle giant, as the photos accurately captured. He sympathized with me, a young mom at the time, trying to understand the devastating disease that my own son narrowly escaped. I sympathized with him in his mission.

The story of Robbie Johnson was heartbreaking; such a lovely young man, who adored music and his mother. He shot himself in the head at age 22, when he learned that despite all the pain he had suffered, things would get worse. He reached his end. I wonder how many of our guys today are suffering this same agony. Robbie’s photo is on the cover of the book.

Bryan Clark

And Bryan Clark… the updated book did not update that Bryan has passed in 2009. I only know this due to an exquisite story about Bryan. I was bound that year for the Dominican Hemophilia Camp that I helped to found. But the camp almost never happened; you cannot have a camp with 50 boys with hemophilia and no factor. We almost cancelled camp. Where would we get all the factor we needed? Then a phone call. Bryan’s mother, who asked if she could donate her son’s factor to Project SHARE; he had died. The Clarks had never been on my mailing list; I guess they found me through their HTC. I never heard of them They donated the factor, and I took it with me to the Dominican Republic camp that year.  I shared with the boys how special this factor was, as it was given by a family whose son with hemophilia had died. How this donation permitted all the boys to enjoy camp. And these are boys who are very poor; camp means everything to them! Later at camp, all the boys made cards for the family to express their thanks. The theme of the camp was metamorphosis, represented by a mariposa, butterfly… to show the boys how camp will help transform them. The boys all drew butterflies on their cards. Weeks after I returned from camp, I heard from Bryan’s mother, who was shocked. Bryan loved butterflies… how did I know, she wanted to know?

Tom and Fran Fahey

We are all interconnected in the hemophilia family, in good times and bad. In sickness and health. Our past, their past, is as much a part of us as our future together. While we our community continues to go through a metamorphosis, like Easter, like spring, Kathy’s book Dying in Vein takes a snapshot of a time in history that we must never, ever forget, and we must honor. Perhaps March, or Easter, or spring, is that time to do that.

Order Dying in Vein here. 

Our Vietnam Wall: The Hemophilia Memorial

I’m stunned into silence while watching Facebook, as I see the names on
banners…Papo Gonzalez, Patty Kuhn, Charles Carman, John W. Cavanaugh, Tom Fahey, Christopher Pitkin, Loras Goedken, Terry Stogdell, Greg and Tim Haas, Michael Sutton, Bill McAdam, George McCoy, Brent Runyon, Larkey DeNeffe, Brian Craft…

So many of these people with hemophilia were known to me personally; some I shared a drink with, or travel, or swapped stories. Brian Craft and I were once in a video together, back in 1993! Tom Fahey and I met several times as he was nearby in Boston. I had removed their names from my mailing list, over and over, as each one passed. I still keep a framed photo of Tom in my home office. All are gone, victims of one of the greatest tragedies in the history of medicine. The infection of our nation’s blood supply by HIV.

They are like our veterans. Each November we remember those who sacrificed their lives so that we could live more free ones, so that we can escape the threat of tyranny, or the threat of invasion. Their deaths meant better quality of life for future generations. The massive deaths, up to 10,000, of those with hemophilia from AIDS spurred research, better factor products and ultimately better medicine to combat HIV, sparing thousands, perhaps millions around the
world from infection through blood products.

On September 16, these “veterans” were finally given a federal memorial, The Hemophilia Memorial, residing at the National AIDS Memorial Grove. The Memorial is similar to the Vietnam Wall, where names will be remembered forever. I wish I could have been there, but our community was well represented by the surviving family members, loved ones, physicians who treated patients and our national advocates. What an incredible and moving memorial to the
unsuspecting patients caught up in a maelstrom of disease and even deceit. Nothing like this virus had happened in history and it was the stuff of science fiction.

While we have needed this memorial to help heal, even 30 years later, it took a long time to make it happen. AIDS has been a painful reminder of our failures, and young lives lost. Now, as more and more hemophilia patients survive AIDS and live normal lives, even having children, it seemed right to have a memorial.

My son was born in 1987 as the AIDS firestorm had fully ignited; the very week he was born the Ray brothers were bombed out of their home in Florida. The next month was National AIDS Awareness Month. We lived in fear, of the disease but also of public sentiment, which was against us. This community has prevailed, in spirit, in attitude and in results. The slogan at the Dachau Prison Camp I visited at age 16 was “Never again.” I hope this can become our
slogan too. Success can sometimes breed complacency, and one thing this community has prided itself on is to never be complacent. Our future and our children’s lives depend on that. Hemophilia changed history twice: the overthrow of Tsar Nicholas II of Russia, and the way we  with blood and disease worldwide.

Let’s change it once more with a cure. And this Memorial will be our everlasting remembrance of an ancient disorder and a modern age disease, whose time came, changed history, and went.

“Our story will be remembered. The Hemophilia Memorial will ensure
we never forget those we loved but lost.” —Jeanne White-Ginder, mother of Ryan White

LA Kelley Communications donated $1,000 to the Memorial during the NHF Annual Meeting opening night. Please consider making a donation
to the Hemophilia Memorial here.

 

Remembering Ryan

On April 8, 26 years ago, 18-year-old Ryan White died.
He is remembered in the bleeding disorders community for his extraordinary courage. Born with hemophilia, he was diagnosed with AIDS when he was only 13, in 1984. AIDS was not well understood at this time, and fear was rampant in the public. People thought you could catch HIV by shaking hands with someone with it, or just being near them. Ryan contracted HIV from his clotting factor, which at the time was not treated to destroy viruses. He posed no threat to anyone.
When his school tried to keep him from attending, Ryan and his mother Jeanne White Ginder launched a legal battle, and Ryan became a celebrity. And celebrities stood by him, including Michael Jackson and Elton John. He became the face of discrimination against those with HIV, and became an advocate for AIDS research and public education. He died in April 1990, one month before his high school graduation.
In August 1990, four months after White’s death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White Care Act), in his honor. The act is the United States’ largest federally funded program for people living with HIV/AIDS. The Ryan White Care Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families. The legislation was reenacted in 1996, 2000, 2006, and 2009, and is now called the Ryan White HIV/AIDS Program.
Today, his mother Jeanne continues to advocate to spread Ryan’s message and story. 
For an excellent multimedia look at Ryan’s impact on the hemophilia community, visit HFA’s website

A Father’s Pursuit of Justice

After spending three incredible, wonderful days in Washington DC with our amazing community, it seems the right time to mention this unique book: Vial 023: A Father’s Pursuit
of Justice
by Gary William Cross.

This is a poignant tale of parents who struggle raising a wonderful boy with hemophilia in the 1970s, only to learn later he has contract HIV. When their son eventually dies, the Crosses join forces with other advocates and activists to sue the pharmaceutical companies for negligence, and bring some sort of peace and truce to a fractured and angry community.

There have been many books written about the HIV scandal, most notably Blood by Douglas Starr, and And the Band Played On by Randy Shilts. There have been memoirs of loved ones who have died. But to date no one has told the story of how a select few in the hemophilia community brought down the rigid armor of big pharma, against all odds, while still mourning the loss of their sons, husbands and relatives.

The story is a memorial in many ways to Brad Cross, born on April 30, 1975 in Baton Rouge, Louisiana. Gary, his father, knew that wife Karen and her two sisters were carriers of
hemophilia.

Because of this, the parents suspected, and it was confirmed right away, that Brad had hemophilia. He was not circumcised but his heel prick bled. He was first infused with factor VIII concentrate at the six
months for a bilateral hernia surgery. By age 5, hemophilia seemed under control. The Crosses were excellent parents: Brad received treatment at the hemophilia treatment center at
Tulane University in New Orleans. Both parents worked to ensure two health insurance policies to cover mounting costs. The
family belonged to the Louisiana chapter of the
National Hemophilia Foundation.

When HIV was reported in certain groups of people, and suspected to be in the blood supply in 1985, Brad asked his HTC
hematologist point-blank whether he had AIDS. His physician did not answer, but later
informed Gary that Brad was HIV positive. The HTC had anonymously tested Brad’s
blood, and labeled the vial “Vial 023.” As the disease became full blown, Brad suffered seizures
and a gradual mental deterioration, losing
his speech and his ability to walk.

The narrative of the parents’ love for their son is gripping and evocative. It is a powerful testament to their love for Brad as well as their desire to not have others hurt that the Crosses helped to
initiate in 1991 a class-action lawsuit against four pharmaceutical providers
of the factor concentrate–Alpha, Armour, Baxter, and Bayer–a legal process
that would last 10 years and eventually include 124 families. The Crosses lost almost everything, including hope, but stayed the course, and in the end were victorious.

But not with Brad; he died at home
on April 16, 1993 just days short of his eighteenth birthday. The pharmaceutical
companies offered compensation of $100,000 to each HIV-infected individual with
hemophilia, but some opted for the class-action suit. Gary, a man with high principles, finally received personal apologies from the pharmaceutical CEOs. 

As the mother of a child with hemophilia who has dedicated her life to helping this community, I believe this is a vital story to the hemophilia community’s unique and tragic past, and is a model of advocacy: what one man can do to change the world. Everyone should read it.

As an editor and author I would be remiss if I didn’t, however, point out some problems with the book itself. Expect an amazing story; don’t expect great writing. The text suffers from lack of good editing. There are typos, misspellings of names, and incorrect or incomplete medical and scientific terms. Some of the phrases are quaint and a throw-back to the 1950s. Some will make you cringe as politically or culturally inappropriate. Nothing is documented or footnoted; on page 114 Gary asserts that the four pharmaceuticals never spoke with each other as they were trying to control market share, perhaps not realizing that legally these companies cannot speak with one another due to anti-trust laws.

I recommend trying to overlook these and focus on the story. It is remarkable and Gary Cross is a modern day hero, as are the men and women who fought beside him, many of whom were at Washington Days last week, still fighting the good fight for the future of our children with bleeding disorders.

Gary and his wife, now
retired, continue to serve their community as volunteers and fund-raisers. You can meet them at hemophilia events. Gary serves as chair of the board of Patient Services, Inc. (PSI), which provides insurance premium assistance to families with chronic disorders.

The book is available at Amazon.com. 151 pages, published by Kudu. 2012

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