One morning in 1988, I heard a loud noise coming from the bathroom. The door was blocked, so I pushed my way in to find my beautiful wife, Katie, lying on the floor. She had had a seizure. I rushed her to the hospital, where she was diagnosed with a tumor and given six months to live.
Following surgery to remove the tumor, her immune system flattened out.
That day, we learned Katie had HIV.
I had it, too.
Katie held on to life for another five years, but she declined day-by-day. When she became so weak that she had to leave her job in advertising, her coworkers assumed she had cancer. Learning of this misperception, she returned to tell them the truth.
That's true courage.
I'd like to say I had that same courage at the time, but that wouldn't be true. I was running a large before- and after-school program at the local YMCA and was concerned that, if I revealed my diagnosis, I might lose my job. We needed the income, so I remained silent.
Then in April 1992, Katie died.
Looking back, I recall that, even in her final days, Katie's selflessness and inner strength remained intact.
"There are three things I want you to do," she said. "Remarry, have kids, and fight to live your life."
I heeded her words. I married a remarkable woman named Robin, we adopted a boy named Langston--now 7-years old and the love of our lives--and I have been fighting to live a full life ever since.
But the greatest gift she gave me was forgiveness.
"Val, never blame yourself for what happened to me."
I don't. But it wasn't easy at first.
You see, Katie contracted HIV from me after I became infected with not only HIV/AIDs, but hepatitis C, as a result of contaminated blood products used to treat my hemophilia. Hemophilia and other inheritable bleeding disorders--von Willebrand disease and rare factor deficiencies--prevent the blood from clotting normally, which can result in extended bleeding after injury, surgery, or trauma, and can be fatal if not treated effectively.
From the late 1970s to the mid-1980s--prior to more stringent blood safety measures and more sensitive tests--HIV made its way into blood products. As a result, many people with hemophilia developed AIDS and thousands died.
I survived and committed myself to working for the bleeding disorders community by engaging with the National Hemophilia Foundation (NHF). Since 1948, NHF has led the fight against bleeding disorders through research, advocacy and public policy.
In 1992, the year Katie died, I went to NHF's annual meeting and was elected Chairman of the Board. We began a crusade to help people who had developed HIV from tainted blood products, culminating with the passage of the Ricky Ray Hemophilia Relief Act of 1998. I went on to serve in various roles within NHF and became CEO in 2008, a position I hold today.
Since Katie's death nearly 25 years ago, the bleeding disorders community has made great strides in treatment, public policy and advocacy--and in blood safety, as well. And this month, we launched a new movement called the "Red Tie Challenge," which aims to start a national conversation about bleeding disorders.
The "Red Tie Challenge" challenges individuals and groups to: get creative in showing how they wear a red tie; record and post their "best red tie looks" to their social channels with #RedTieChallenge; and encourage their fans and followers to take it, too, while considering making a donation to support the bleeding disorders community.
Since blood ties--embodied in the color red and the tie--are what bind our community together, the red tie is our new symbol. The color red also conveys strength, leadership, courage, determination and, above all, love--qualities and emotions that define our community.
This year, NHF also worked with the U.S. Department of Health and Human Services to designate every March, beginning this month, as Bleeding Disorders Awareness Month. Its purpose is to unite all members of our community and engage the American public in our journey, as well.
My own journey began in Buffalo, where, when I was born, every male member of my family with hemophilia had already died. Then, fast forward to the fourth grade, where one day I excitedly turned to the section on hemophilia in my new science textbook, only to learn that my life expectancy was 20 years and, being 10, realized I was half way there.
Today, at age 57, I've nearly tripled my life expectancy and, recently, thanks to advances in medicine, have been cured of hepatitis C.
I am so grateful to have had Katie in my life. Without her, I wouldn't be who I am today: a husband, father and advocate striving to be the best I can be--for Robin, Langston and our more than three million member community.
And it's with my advocate's hat that I ask you to join me, this month, in celebrating Bleeding Disorders Awareness Month and taking the Red Tie Challenge. Learn more at www.redtiechallenge.org.
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References:
1. White II, GC, Hemophilia: An Amazing 35-Year Journey from the Depths of HIV to the Threshold of Cure, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917149/, Trans Am Clin Climatol Assoc. 2010; 121: 61-75. Accessed March 3, 2016.
2. Centers for Disease Control and Prevention, Von Willebrand Disease (VWD), http://www.cdc.gov/ncbddd/vwd/data.html#ref. Accessed March 3, 2016.