One gay man is uncovering the failures in hemophilia treatment

Story by: Bobby Hristova | Illustration by: Jordan Mak

Mark Ward has been fighting for his life since he was born. At three-months-old, doctors diagnosed him with severe hemophilia. At 14, he learned he was HIV positive. Then, Ward found out he had hepatitis C. Now, 49-years-old, the number of diseases Ward lives with are in the “double digits.” He got almost all of them from tainted blood. But his illnesses aren’t the only part of his battle – Ward is also gay. He says rampant homophobia in the 1970’s coupled with a limited knowledge of HIV made him a unique patient growing up.

“I was told there were no gay hemophiliacs,” says Ward, who lives in the U.K. “Our consultant basically told my parents, ‘don’t share your HIV diagnosis with anyone because we can’t guarantee your safety.’”

More than 20 years later, Ward says the black and blue bruises he wears day to day remind him of how he’s been treated. He still thinks hemophilia organizations and specialists have no idea how to treat gay patients with bleeding disorders. “When you go on different hemophilia websites and search for the word ‘gay,’ nothing comes up,” he says. “There is this global mindset that hemophilia organizations just don’t talk about gays.”

Mark Ward, as an infant, before his hemophilia diagnosis. 
(COURTESY: MARK WARD)

It spurred him to start Haemosexual in 2014 – it’s an advocacy group and online resource for other gay men with bleeding conditions. He’s flown around the world from conference to conference, trying to help doctors understand gay patients with blood clotting disorders. He also wants to prevent any more hemophiliacs from contracting HIV. Ward’s work includes being a resource for LGBTQ+ patients who approach The Haemophilia Society U.K. and creating a booklet to help gay patients stay sexually active in a safe way.

But hemophilia organizations say the lack of a structured system for gay patients is beyond their control. Bojan Pirnat, acting executive director at Hemophilia Ontario, says there might not be enough men with the same problem as Ward. “There very well may be a need for a system and maybe other organizations haven’t even considered it a problem,” he says. “We’re too small as an organization to addresses those issues. We’re very volunteer based.”

Hemophilia Ontario works with gay patients on a case-by-case basis, but Pirnat also says Hemophilia Ontario and the Canadian Hemophilia Society have yet to discuss how to help patients who identify as trans. “That’s something I’ve identified as a gap in the classes I taught to the nursing students at Niagara College,” says Lorraine Hulley, founder and president of the private patient advocacy group Pro Health Navigators Canada. “We don’t explicitly talk about care for the LGBTQ+ population.”

 

“They didn’t care because I was supposed to die anyways.”

 

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