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

Reflections on the LGBT Community

I’m visiting my daughter at college, just for the weekend: enough time to realize how different things are when I went to college so long ago (one dorm specializes in “clothing optional” parties?), and also to enjoy young people and their passionate causes. Students here are crazy about Bernie Sanders, for one. And conservation, for another. 
And gay people rights. It made me think about our bleeding disorder community, and how the LGBT community fits in. Thirty years ago our paths were intricately woven, bound by the HIV holocaust. And now? What has happened? Justin Levesque, an articulate young man who is gay and has hemophilia, eloquently and thoughtfully writes about this topic in the February issue of PEN, shared below:

The Sum of My Parts
Justin Levesque
There’s a memory I have, from when I was about eight years
old, riding in the backseat of my mother’s white ’91 Pontiac Grand Am. When
“Goodbye Yellow Brick Road” came on the radio, I repeated an offensive and
overtly homophobic joke about Elton John, the punch line lying far beyond my
comprehension. Perhaps I had learned that making the joke was important, an
unspoken rule. Perhaps I felt it necessary to mimic the way my father spoke
while creating as much distance as possible between the unconscious truth about
myself and Elton’s music, which blared from the radio.
            In
later years, my mother would have to travel her own rocky path to reconciling
the latent reality that her son was gay. But to her credit, in that moment, she
steadied the wheel, disapprovingly whipped her head to look at me, and simply said,
“Baby, that doesn’t matter when the music is so beautiful.”
            While
my personal identity remained mostly dormant and unprocessed for several more
years, there was never any escaping hemophilia, the medical identity that was
genetically determined to be seen and heard. Born in 1986, I narrowly missed
the direct impact of the HIV epidemic that swept the nation through the tainted
blood supply. This was also a period in our community’s history that predated
prophylaxis: treatment was given only in response to a bleed, and the
punctuated relationship between a bleed and pain was intimate.
            These
were formative years between a time of medical crisis and the promise of
prophy. It was a place where resilience became an innate part of who I am, and
when I first realized an acute awareness and responsibility for my body. And it
is a place where I can still find inspiration from all who came before me, and
take comfort in the forged path for all who follow.
            I
never officially came out as gay or, as I now self-identify, as queer. Through
adolescence, I embraced my medical identity as a person with a bleeding
disorder. I accepted that there was indeed something different about me. My
blood doesn’t clot, and striving to project that I was “normal” seemed utterly
exhausting. Each summer, my classmates would drive to an overpass with a river
underneath. I’d go along, but it felt easy to choose not to jump off the
bridge, down the daunting 25 feet into the dark, shallow water. What was there
to prove? Allowing my medical identity to be a part of who I am was the
internal scrimmage in the process of organically becoming the sum of my parts,
intrinsically woven. There was no need for an “out of the closet” announcement
or to explain all the missed days of school. I refused to live anything but my
truth.
            Of
course, there have been obstacles along this journey of identity. But oddly
enough, the most difficult hurdle to navigate so far has been within the
hemophilia community itself. The lesbian-gay-bisexual-transgender-queer-plus
(LGBTQ+, but more specifically, gay male) community and the hemophilia
community have a deep and complicated historical entanglement that originated
during their shared health crisis of the 1980s. At the time, both communities
were just entering into what seemed like a period of liberation. LGBTQ+ folks
were experiencing a newfound visibility in society while the advent of factor
concentrate gave people with hemophilia fewer trips to the emergency room and
the “invisibility” of home infusion. That golden age was short-lived, and these
two groups of people, essentially strangers, became embroiled in the fight of
their lives. Fueled by fear and biased media coverage, the only choice was for
both groups to acknowledge the other in what would become a relationship that
was publicly antagonistic yet quietly supportive.
            Some
of the public antagonism cut deeply: people with hemophilia were portrayed as
innocent victims of the epidemic. In response, LGBTQ+ activists rejected their
presumed guilt, and proclaimed “All People with AIDS Are Innocent.” National
Hemophilia Foundation established a “gay blood ban” in 1983. Meanwhile,
hemophilia families looked beyond their HTCs to seek information and resources
from LGBTQ+ HIV/AIDS support groups, and hemophiliacs themselves became
activists.
            Michael
Davidson writes, “Hemophiliacs, by association with a ‘gay-related’ disease,
were subject to homophobia on the one hand and what one commentator has called
‘hemophobia’ on the other.”1 Ryan White, threatened and targeted himself,
in many ways encapsulates this sentiment. Specifically, in the mainstream
media, his image was in part responsible for desensitizing the stigma around
HIV/AIDS, but it also—despite Ryan’s consistent rejection of the criticism of
homosexuality—created distance between hemophilia and the LGBTQ+ community.
            When
it comes to being gay/queer and having hemophilia, it can sometimes feel like
these two key parts of my identity are in conflict. This, in turn, never fails
to take me by surprise, given how important each was to the other in my
coming-of-age tale. And, as I would learn during community events, that
conflict inside me was not unwarranted. In 2014, after moderating a rap session
for LGBTQ+ people with bleeding disorders, I was questioned on the validity of
holding such a session. Then I was asked, “Why are you trying to bring AIDS
back into our community?”
            Even
with the amazing progress toward equality we’ve seen in 2015, it’s clear there
is still a wound to be healed among us.
Justin Levesque holds a BFA in photography from the
University of Southern Maine, with a specialization in the critical analysis of
images and their impact on social norms and community expectations. He lives in
Portland, Maine, and runs his own design studio, Shop Geometry. Justin serves
on the board of directors for Hemophilia Alliance of Maine and runs a group of
programs called FOLX (folxfolx.org) that celebrate arts and creativity in the
bleeding disorder community.
For more information on the LGBTQ+ community, please visit
http://www.glaad.org/reference/lgb or thesafezoneproject.com.
1.    
Michael Davidson, Concerto for the Left-hand Disability and the
Defamiliar Body (Ann Arbor: University of Michigan Press, 2008), 41.

Boots on the Ground: NHF’s 67th Annual Meeting

At least something
at the Dallas meeting was older than me—the NHF! This is my 24th
year of attending NHF meetings and I was thrilled to catch up with so many
colleagues and friends. 


Kim C. and John Urgo
of RUSH, with Zoraida
“Boots on the Ground” refers, I think, to our
exceptional advocacy work, a history of which I liken to the Big Bang theory. At
one time there was darkness out of which an explosion heard around the universe
occurred, and new stars were born. The darkness, of course, was the HIV era,
the “holocaust” in the words of many, when half our already small community was
decimated by contaminants in the nation’s blood supply and blood-products used
for clotting blood. The Big Bang was the outcry from patients, who formed
groups like the Committee of Ten Thousand, and later Hemophilia Federation of
America, to take on corporate America and the government of the United States
itself. These people—Corey Dubin, Dana Kuhn, Tom Fahey, Val Bias and more—were
our stars, emerging through that dark time. Many of our stars have burned out, passed
away, but many still burn bright.
Laurie Kelley with Texas hemophilia friends Andy Matthews
and the famous Barry Haarde!
They’ve now harnessed all that energy,
knowledge and power and shine it on industry and insurance companies,
protecting our need for safe products, available products and access to all
products. And with them are hundreds of families who have joined that cause.
To remind us all of where our advocacy comes
from, NHF spotlighted Ryan White, one of our community’s first advocate,
certainly our first child advocate. An Indiana native, Ryan won the right for
all children to attend school who had hemophilia and AIDS; his mother Jean
White was interviewed and I think we all had tears, when she teared up. There
are not enough words to express how courageous that boy was.
NHF Chair Jorge de la Riva gave an
impassioned speech that praised the efforts of all our community to stand up
and protect our needs and rights. He also challenged us all to look deep within
to ask What more can we do? Can I do? We can all do something.
NHF CEO Val Bias’ speech stood out for his
challenge to include the fringe members of our community, especially women with
bleeding disorders (who are really not just carriers), inhibitor families and
those with rare bleeding disorders, like factor XIII. Indeed, he called out to
those members to stand and be welcomed, and the audience exploded into applause
when an entire row arose.
I would add to that the LGBT community, which
has existed quietly. And yet they are some of our greatest activists. Don’t know
what LGBT stands for? It’s time to look it up, and get to know them.
Someone older than me? Joe Pugliese,
my oldest friend in hemophilia
Pharmacokinetic testing was a hot topic: how
does your child react to infused factor, especially if he is on prophy? Only
one way to learn how quickly the factor fades over time from his body. Not
every child can be prescribed a three-times-a-week, Monday/Wednesday/Friday
prophy regimen. Running a blood test consecutively over a few days to test his
levels will reveal how quickly factor is used up—in other words, what’s his
unique half-life? This topic dovetails perfectly with the release of our
one-time newsletter YOU, arriving in your mailbox soon! It’s all about your
child or loved one with hemophilia’s unique needs, including his or her
particular half-life, so vital to know.
One huge change I noticed? Years ago,
specialty pharmacies and homecare companies dominated the exhibit hall floors,
with stuffed bulls to ride and take a photo with) and even once a huge pirate
ship (remember the pirate ship anyone?). These companies outdid each other in a
bid to get potential consumers to their Vegas-style booths. Now, they have
shrunken to little booths on the periphery, while the megabooths and choice
space goes to pharma. Why? Specialty pharmacies have consolidated into a few
monster, dominant entities. They don’t have to compete for business anymore;
they own us. Pharma on the other hand, is competing fiercely for your attention
with a glutted pipeline of products in clinical studies. Prepare for lots of
pharma advertising in the new year.
Please go on line and read up on the
three-day annual event, which brought treatment staff from HTCs, consumers,
nonprofits, manufacturers and homecare companies all together for hours of
learning and connection. Congratulations, NHF, on another successful year!
Keep  these boots on the ground,
with sharp spurs.
 
More photos from the event to come!
Good Book I Just Read
How to Love [Kindle]
Thich Nhat Hanh
Short essays on the nature of love, peace and
how to find these traits within so you can better  encourage the transfer of these to others in need. Like all
Hanh’s books, it is easy to read and leaves you feeling more tranquil and
loving. Three/five stars.

Lest We Forget: Ryan White

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.