Nova Scotia mom wants policy change for organ, tissue donors after gay son's death
When Liam Dee began receiving hospice care shortly after starting his nursing career, he knew the rare cancer that had ravaged his body meant his organs were too damaged to donate. But the 26-year-old was grateful his tissues, including skin, corneas, tendons and bones, could still go to people who needed them.
However, his tissues were rejected when he died last November, said his mother Cindy Gates-Dee, who learned from reading her son's medical records that his "homosexual status," as noted on a screening form by a tissue specialist, meant he was declined as a high-risk donor because he'd had sex with another man in the last five years.
But neither she nor Dee's husband was asked any questions about Dee's lifestyle to determine the probability of high-risk behaviour that specialists believe lead to increased risk of HIV or hepatitis B and hepatitis C, Gates-Dee said from Aylesford, N.S.
"Huge assumptions were made. I know that my son would have been upset," said Gates-Dee, adding he'd registered as an organ donor long before 2021, when Nova Scotia became the first province where residents are presumed to agree to donate their organs and tissue when they die, unless they opt out of the program.
"It is obvious that Liam had been discriminated against," she said.
Her mission now is to file a case with the Canadian Human Rights Commission so others are not stigmatized, she said, and people on long wait lists for organs and tissues are not deprived of them.
"If he couldn't leave a legacy in helping other people with his tissues, then at least I could try to help change some of these policies."
Jacob MacDonald said he and Dee married in March 2022, but nine days later his husband was diagnosed with an aggressive liposarcoma, which formed a large tumour in his chest.
"Liam and I were in a monogamous relationship for more than four years," he said. "I take a lot of offence to the assumption that just because we were in a homosexual relationship that we were having high-risk sex," MacDonald said.
"I would like to see a change that would reflect more on people's behaviours rather than just their sexual identity. Because they're writing off an entire group of people that could be donors."
A spokesman for Nova Scotia Health said men who have sex with men are asked about any high-risk behaviour over the last 12 months if they want to donate organs, in keeping with a national standard, even for those in a monogamous relationship.
But the abstinence requirement in that province is even longer when it comes to potential tissue donation from that group, Brendan Elliott said in an emailed response.
"We follow the American Association of Tissue Banks regulation, which includes a five-year timeline," he said of the province that sends its tissue to the United States for processing.
Grant-Dee said she was not made aware of any such policy when her son was in a hospice.
Screening a potential cell or tissue donor typically involves reviewing medical records, an interview with the donor or a close family member or physician, in addition to laboratory and medical testing.
Health Canada, which is responsible for enforcing regulations on human cells, tissues and organs for transplantation, said all potential donors must be assessed to ensure they would not be transmitting any infectious diseases to recipients.
Regulations are based on standards set by the Canadian Standards Association. They include an assessment of any high-risk behaviour and "are not intended to be discriminatory against specific groups," Health Canada said in an emailed response.
"Health Canada will engage the CSA technical committee in 2023 to discuss the potential for changes to the (men who have sex with men) donor screening criteria."
Organs such as heart, lungs and kidneys are labelled as coming from "increased infectious risk donors" if those organs have been donated by a man who had sex with a man in the last 12 months. But the organs can be transplanted with the consent of a recipient who may have been on a long wait list, based on Health Canada's "exceptional distribution process."
"This abstinence period doesn't make sense, it's too long," said Dr. Murdoch Leeies, an organ donation specialist and researcher at the University of Manitoba.
Tissues are routinely rejected due to the same abstinence criteria, but in provinces such as Nova Scotia, where the tissues are sent for processing in the U.S. and the criteria is set by the Food and Drug Administration, men who have sex with men must have been abstinent for five years, amounting to a "more discriminatory process," Leeies said.
Overall, those policies lead to stigma against LGBTQ people, even if they are in a monogamous relationship, use condoms and do not have anal sex, which is associated with a higher chance of transmitting HIV, he said.
Leeies's report on current "discriminatory" policies was published this week by a Vancouver non-profit called the Community-Based Research Centre (CBRC), which promotes the health of people from diverse sexualities.
In an interview, Leeies said the abstinence period should be lowered to 30 days for men who have sex with men because HIV can be detected through the Nucleic Acid Test (NAT) about seven days after someone is exposed to the virus. The test is not regularly offered to organ donors but is currently mandated by Health Canada for "increased risk donors," he added.
A cheaper antibody/antigen test is routinely used to screen for HIV and in most cases the virus can be detected 35 days after someone is exposed though it is possible for HIV to go undetected by this test for up to 12 weeks after exposure, Leeies said.
CBRC's recent recommendations to Health Canada include revising current eligibility for organ and tissue donation to be behaviour-based and not identity-based, and mandate that Nucleic Acid Testing be used for any donors who are considered to be an "increased infectious risk" based on "updated, evidence-informed, risk-based criteria."
Health Canada changed blood donation eligibility criteria for men who have sex with men last year, prompting Canadian Blood Services to update its screening questions to focus on higher-risk sexual behaviour for everyone, regardless of sexual orientation.
Leeies said it's time the organ and tissue transplant system is also revised so potential donors are not unnecessarily restricted based on their sexual orientation.
A 2019 federal Standing Committee on Health, made of up members of Parliament issued a report calling for an end to organ and tissue donor policies it said discriminate against LGBTQ+ people because of inequities that community experiences.
One of its 23 recommendations called on Canada to end discriminatory practices related to organ and tissue donation for men who have sex with men and to adopt donor screening policies that are based on evidence and behaviour.
This report by The Canadian Press was first published April 28, 2023.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Camille Bains, The Canadian Press