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.”
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.”
Ward says his many years in the hospital as one of the only gay men with a bleeding disorder put him in a precarious position. He says he was on and off countless medications and trials in the hospital that nearly killed him. Ward recounts everything from becoming dangerously skinny, to feeling his own teeth crumble inside of his mouth. He says he even did trials that treated his condition without any side-effects, but never got a chance to continue them after the trials ended. It all left him feeling like a lab rat.
“At 17, when I went in for hemophilia review every three months, they took me into a room where four or five women asked me questions about masturbation and sex,” he says. “They ran all kinds of tests on me, we were cheaper than chimps to them, but they didn’t care because I was supposed to die anyways.”
Angelica Martin, acting chair of Open Arms Patient Advocacy Society, says people who work in medicine aren’t immune to their own biases or assumptions about patients. “Sometimes there’s a dismissal and refusal from the medical community to listen to a patient,” she says. “Somebody might be prescribed a general medical approach that doesn’t consider the nuances and challenges in the LGBTQ+ community.”
Martin has rarely seen any resources for gay hemophilia patients, especially at the local level. Martin says the few that are out there are run by people like Ward, whose only ties to medicine are the diseases he fights moment to moment, instead of having an education in medicine.
Haemosexual has been ignored by virtually every hemophilia society Ward has approached.