"I would have loved to have been a dad someday, but then, I was diagnosed with HIV." This is an all-too-common statement shared by men living with HIV. For years, the focus has been centered on preventing new infections, not promoting parenthood. But times are changing; we are fortunate to live an age when HIV is a chronic, manageable condition, and those of us thriving with HIV have never had more options available.
Nevertheless, despite numerous medical advancements, the conversation on reproductive health has proven challenging, as providers face uncertainty about how to discuss the topic with their patients, and patients struggle to know what questions to ask their doctors, ultimately resulting in a break-down of a vital patient-provider building block: communication. In addition, the focus has been centered on men who have sex with women, while ignoring other subgroups such as: men who have sex with men, transgendered persons, ethnic minority groups and men who wish to be single parents by choice.
The time has thus come to have a long-overdue conversation about the desires of men living with HIV and fatherhood, and that conversation moved forward on June 13th in a webinar hosted by HIVE. This was an opportunity for patients, providers and educators to come together to discuss a subject that has long been considered a taboo.
The patient experience was represented by Pete, an HIV-positive musician and author. He has been living with HIV since 2006, and in 2011, he achieved an undetectable viral load. Pete said it has "totally changed his life" and allowed him to "have confidence in sex and dating again." Now happily married, he is one of approximately 120,000-250,000 people in the United States in a serodiscordant or mixed-HIV status relationship.
Men such as Pete and I are educated when it comes to these matters, but that's not true of all men living with HIV. In fact, focus groups conducted by HIVE found that many men who have sex with women had limited awareness of safer conception strategies. Even more troubling, most surveyed said that no provider had ever discussed their reproductive health desires with them. I believe this stems from an even greater societal problem that makes children the sole responsibility of women. The fact is, it takes a penis and a vagina to result in a baby, thus men are part of this equation. Therefore, it is important for men to take an active role in this conversation with their partners and providers.
For me, being able to become a father was a major concern from day one (you can read more about my journey to fatherhood here). My doctor did take the time to explain that it would be a possibility, but he didn't provide many details. He said that, when the time was right, we would discuss it, most likely because I was not in a relationship at the time. However, it's important to remember that most pregnancies are not planned. That's why it's important to empower patients to take control of their diagnosis by "asking early and assuming nothing", as Rana Chakraborty, M.D., FRCPCH, a pediatric HIV specialist from Atlanta, explained. We cannot assume that men aren't interested in becoming fathers or fear that men will misuse the information given to them. By continuing this way of thinking, providers are in fact unconsciously contributing to HIV stigma.
In the webinar, Brent Sugimoto, M.D., of Kaiser Permanente reiterated that these aspirations are not only necessary but also important to a patient's overall whole health, including their happiness. Whether or not an HIV-positive man wants to become a father, the choice is his, but all men deserve the respect and opportunity to at least to have the discussion.
Of course, other options exist that providers can bring up with their patients, such as pre-exposure prophylaxis (PrEP) and various fertility treatments. Ultimately, it's about giving patients the choice and allowing their voices to be part of the conversation; after all, we are the ones living with HIV. Providers can take an active role by roleplaying reproductive health discussion with their patients and encouraging them to bring in their negative partners to discuss the options.
Moreover, reproductive health does not stop with the birth of a child, and it's important for supporting organizations to work with patients to ensure adequate housing and food is in place for both parents and children. As you can see, this is a multifaceted issue but, it all starts with a conversation.
I'd like to leave this blog with a brilliant quote by Guy Vandenburg, an HIV clinical care specialist from San Francisco and webinar participant: "If HIV weren't in your life, how would your life look different?" Doctors need to be asking patients these kinds of questions, and honestly, we should be asking ourselves these questions. The sky is the limit when it comes to HIV and, yes, that includes becoming a father.
For information on men's reproductive health please visit hiveonline.org or text 415-842-2722.