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.
 http://www.aidsmemorial.org/

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.