Dwone Jones, known as DJ, was diagnosed with a rare form of cancer in 2011.
Five days after his diagnosis, he started radiation and chemotherapy to combat the aggressive nature of the disease.
But he was never asked about his plans to start a family by health professionals, and an option to freeze his sperm before treatment wasn’t offered.
“There was never any conversation about not being able to have kids, or it was never asked,” DJ said.
“I guess just hearing that news and not knowing if you’re going to live or not, you’re not thinking about freezing sperm or anything like that.”
DJ became sterile following the chemotherapy, and he and Jay were unable to have children following two miscarriages using Jay’s sperm.
DJ said he “expected more” from the Australian healthcare system when he discovered he couldn’t have children. Source: Supplied
The 56-year-old said he felt “defeated”, as he expected more from Australia’s health system.
“It didn’t really hit me until my partner and I decided that we wanted to have a family, and I was told that I couldn’t,” DJ said. “It’s a constant reminder of how far we have to go to bridge the gap.”
“I guess as an African-American we are accustomed to having sub-standard healthcare,” he said. “In Australia, I’m accustomed to having excellent healthcare.”
The ‘extra hurdle’ confronted by the LGBTIQ+ community
DJ’s experience occurred more than a decade ago, but fertility barriers persist today.
These experiences are explored in which looks at bias and discrimination in our health system — and how these experiences are more common for women and the LGBTIQ+ community.
Australian fertility clinic Genea’s fertility specialist Ying Li works closely with cancer patients and LGBTIQ+ couples, and said while the issue isn’t exclusive to LGBTIQ+ couples, their access to sperm and eggs is more limited.
“Certainly when I first started doing this amongst the oncology communities, it wasn’t thought of as a priority,” Li said.
“I think where it’s more difficult for the LGBTIQ+ community is their access to gametes is already limited,” Li said.
“So to have that extra hurdle put in front of them does mean that their ambitions and desires to have a family is sort of hampered.”
He said the definition of fertility has only recently widened to include LGBTIQ+ people, and has long been based on a “heterosexual typical family paradigm”.
This has prevented LGBTIQ+ couples from accessing Medicare rebates for IVF, as they were classified as ‘untested fertility’ rather than ‘infertility’.
Li said the American Society for Reproductive Medicine guidelines changed in 2023 to include couples “who need any kind of assistance to fall pregnant”, but it’s still based on the clinician’s interpretation of the definition.
“Certainly for me and a lot of my colleagues, we follow that definition now, which means that we no longer make LGBTQ couples go through all of these other hurdles,” Lee said.
A ‘lack of awareness’ in our health system
DJ is reluctant to describe his experience as resulting from bias but said he believes the health system has a lack of awareness around “dealing with LGBTQ people across the board”.
“I think this is about a lack of awareness, a lack of education, a lack of understanding,” DJ said.
LGBTIQ+ people often confront cost barriers and exclusion when it comes to starting a family.
Ashley Scott is the executive officer of Rainbow Families — an organisation that advocates for LGBTIQ+ parents and families. He says difficulties accessing Medicare rebates for reproductive assistive technology, as well as the use of exclusive language, present challenges.
Scott confronted this when starting his own family, and said same-sex couples, as well as health workers, have reported that the NSW health system still “only has the capabilities of mother and father” when registering a child in the system.
“I remember when I was registering my daughter so I could attend new parents groups, they said to me: ‘Which one of you wants to be the mother, you or your husband?'” Scott said.
“I mean, that was in 2012, but it still happens today.”
A spokesperson for the New South Wales Department of Health said: “NSW Health is committed to an ongoing process of strengthening inclusivity and belonging of LGBTIQ+ people in the health system”.
They said to me, ‘Which one of you wants to be the mother, you or your husband?’
Ashley Scott
They added that an ongoing landmark health strategy is looking to “improve the experiences and outcomes of LGBTIQ+ people in the health system”, particularly in relation to how data is collected.
‘Inclusion is vital’ for LGBTQI+ couples
Ashley added that one partner in same-sex couples is often ignored by healthcare providers who “don’t know how to include them” in the process.
Scott said inclusion is perhaps even more vital for same-sex couples because having children is “not an easy process”.
“And often one of those parties has to sacrifice having a biological link or carrying that child,” Scott said.
“So I find our families really want that inclusion and that connection to the process more than maybe a heterosexual couple might.”
DJ said greater representation of LGBTIQ+ people in government and community is part of the solution.
“We need to have more gay and lesbian politicians, [and] more people at a level that does policy,” DJ said.
“I think situations and stories like this hopefully will be brought to the surface more so that people understand that the same considerations and questions that you would ask a heterosexual couple, you need to be able to ask a gay or lesbian couple.”
