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.


AIDS: Lest We Forget

“Get out!”

The threat of HIV to those with hemophilia was made vividly clear in September 1987. On August 21, 1987, two weeks before my son with hemophilia was born, the Ray brothers had been fire-bombed from their trailer park home in Arcadia, Florida–a warning to the family to leave. It made headlines nationwide and was considered a landmark act in the history of HIV in the US. The story was of shocking interest to everyone, even those of us who didn’t know hemophilia was about to enter our lives.

I still have my copy of People magazine, which had a story on it. Two weeks later, my son was diagnosed and a chill went through me. He was lucky to have just missed the window for contracting HIV through contaminated blood products. But there was national hysteria, misunderstanding about HIV transmission, and paranoia.
There are now fantastic drugs available now that can treat HIV and prolong the lives of those who have it. So much public education has been done to alleviate ignorance and the spread of the virus. From 2005 to 2014, the annual number of new HIV diagnoses declined 19%. And December 1 is World AIDS Day, to remember those who died as a result of this insidious virus. The US hemophilia community alone lost an estimated 10,000 with hemophilia, and this doesn’t include the spouses who were infected. Ten thousand people made up half of our community at the time. 

World AIDS Day remembers those who died, and a ceremony was held at the National AIDS Memorial Grove in San Francisco. Both HFA and NHF were honored to have been invited to participate.

World AIDS Day also serves to remind us that the work is not yet done. I was reading Time magazine on a plane ride yesterday, and was shocked at the statistics I read. 

  • In 2015, 39,513 people were diagnosed with HIV infection in the United States. 
  • More than 1.2 million people in the US are living with HIV, and 1 in 8 of them don’t know it.
  • Gay and bisexual men accounted for 82% (26,375) of HIV diagnoses among males and 67% of all diagnoses.
  • Black/African American gay and bisexual men accounted for the largest number of HIV diagnoses (10,315), followed by white gay and bisexual men (7,570).
  • Heterosexual contact accounted for 24% (9,339) of HIV diagnoses
  • Six percent (2,392) of HIV diagnoses in the United States were attributed to injection drug use (IDU).
  • Louisiana has the second highest new-infection rate: due to poverty, large incarcerated population, stigma, abstinence-only sex ed (CDC data, Time magazine, Nov 28-Dec 5, 2016)
  • Miami: cuts in health spending contributed to a 23% rise in those with HIV since 2004, the fastest-growing rate of infection in US. (CDC data, Time magazine, Nov 28-Dec 5, 2016)

World AIDS Day is an important day for two reasons: to remember the loved ones we lost, and to remind a sometimes still ignorant or risk-taking public that HIV still lives among us, is transmitted through unprotected sex or shared needles with someone who has it (and you cannot tell by looking who has it), and that there is no cure. The hemophilia community warriors have from day 1 led the charge for a safer blood supply, safer blood products, and greater information about HIV/AIDS. 
Read: And the Band Played On by Randy Shilts, Dying in Vein by Kathy MacKay
Note: The spread of HIV in the US was originally blamed on a gay French Canadian flight attendant, Gaetan Dugas, but new analysis of stored blood samples have exonerated him of this. And the Band Played On opens with Dugas’s story and alleged link as Patient Zero.

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

Drugs Provide Cure for Hepatitis C

Even while we are basking in the hopeful glow of new long-lasting factor product approved a few weeks ago, there is even better news. A drug that can cure hepatitis C. You may know that roughly 90% of our hemophilia community was infected with hepatitis C during the 1980s, before the blood supply was tested, and before blood-clotting products were virally inactivated. It seems like another generation, but many of our guys still are fighting hep C, even though their HIV has been brought under control.This is an amazing breakthrough. Read on…

Drugs provide cure for hepatitis C, trials show Medications are hailed as a ‘triumph,’ but are pricey   


Twenty-five years after scientists first identified the hepatitis C virus, doctors are declaring victory over an infection that afflicts more than 3 million Americans and kills more of them than HIV.

In a series of clinical trial results, a new generation of antiviral medications was able to clear the liver-ravaging virus from virtually all patients’ bloodstreams in as little as eight weeks. Even in patients with the most stubborn infections, the new drugs were capable of suppressing the virus completely at rates well over     90%.

The treatments, however, come with a steep price tag. The “sustained virologic responses” reported in the trials typically mean an infection has been permanently cleared. Only further research will establish that these cures will endure, averting an estimated 15,000 deaths a year from liver disease in the U.S. Worldwide, as many as 3% of people have the infection known as HCV.

The new medications are “a triumph of modern medical technology,” said Dr. Jeffrey Tice, a UC San Francisco physician who was not involved in any of the clinical trials. Results were published this week in the New     England Journal of Medicine.

In the treatment of chronic hepatitis C, achieving such success in so short a time, with relatively mild side effects and with a single pill daily, is without precedent. Until recently, physicians relied on two wide-spectrum antiviral medications — interferon and ribavirin — that required precise dosing over periods as long as 48 weeks. Fewer than half of HCV patients are even eligible for the treatment, which comes with punishing side effects. And the regimen’s difficulties cause many to abandon it.

In the same way that antibiotics made victory over human bacterial infections possible in the 20th century, the new antiviral medications have “revolutionized” the treatment of hepatitis C, wrote Harvard Medical School liver specialists Drs. Raymond T. Chung and Thomas F. Baumert, who were not involved in the trials. The  drugs — some already approved by the Food and Drug Administration, others now under consideration by the agency — offer “genuine prospects for the first comprehensive cure of a chronic viral infection in humans,” they wrote.

Among the nation’s baby boomers, the new medications are likely to avert hundreds of thousands of cases of liver cancer and dramatically reduce the number of liver transplants. Americans between the ages of 50 and 68 account for roughly 75% of HCV infections in the United States. While many contracted the virus through illicit drug use, an untold number of boomers are thought to have been infected by tainted blood transfusions before a test for the virus became available in 1992.  Even as health experts welcomed the trial results, they cautioned that widespread use of the new drugs would come at a steep price. A 12-week regimen of sofosbuvir — just one of the medications in a proposed hepatitis C cocktail — costs $84,000, or about $1,000 per tablet. Treatment with simeprevir, another medication in the same class, can exceed $66,000.

At such prices, U.S. patients will have only limited access to the breakthrough drugs for some time to come, Tice said. The cost of treating even half of the Americans chronically infected with HCV would exceed the amount currently spent on all radiological imaging, said Tice, who helped assess the cost and accessibility of the new medications for the California Technology Assessment Forum.  Insurers will probably limit their use to patients with advanced fibrosis or cirrhosis of the liver, a group that represents about one-third of those infected in the U.S. Those patients are at the greatest risk of developing liver cancer or liver disease severe enough to require a liver transplant, conditions that are costly and time-consuming to treat.

In a welter of trial results announced at the International Liver Congress 2014 meeting in London, medications with the chemical names ABT-450/ritonavir, ombitasvir, dasabuvir, ledipasvir and sofosbuvir were successful in bringing about sustained clearance of the hepatitis C virus in the wide range of subjects who took them.  In one of the trials, a combination of ledipasvir and sofosbuvir cleared the virus in 99% of patients after 12 weeks. When the drugs were given to patients with cirrhosis for whom previous treatments had failed, 24 weeks of therapy resulted in a virtually100% success rate.     The trials also demonstrated that among patients infected with the stubborn Type 1 hepatitis C genotype, success rates were above 95%.     The new medications assessed in the latest trials were developed by Gilead Sciences Inc. of Foster City, Calif., and AbbVie of Chicago. The two drug companies funded the trials.   Twitter:     @LATMelissaHealy,0,3083638.story#axzz2yoZmGey8

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