Man whose husband was denied wish to donate tissue in N.S. files human rights complaint

Click to play video: 'National Organ and Tissue Donation Awareness Week'
National Organ and Tissue Donation Awareness Week
Global’s Eilish Bonang speaks with LungNSPEI’s president and CEO, Robert MacDonald, about the importance of being an organ donor and expressing your wishes to your loved ones during National Organ and Tissue Donation Awareness Week – Apr 25, 2023

A Nova Scotia man has filed a federal human rights complaint alleging discrimination after his husband’s dying wish to donate bodily tissues such as skin and bones was denied due to his sexual orientation.

Jacob MacDonald’s complaint to the Canadian Human Rights Commission names multiple agencies including Health Canada, Canadian Blood Services, the Nova Scotia Health Authority and a tissue specialist who he said also discriminated against him based on the couple’s marital and family status.

Liam Dee died from a rare and aggressive cancer last Nov. 10. A donation screening form from that date says his tissues were declined due to his “homosexual status.”

MacDonald said Dee was considered a high-risk tissue donor because of his marriage to a man and the likelihood that he had sex in the previous five years, cited as a factor in increased risk of transmitting HIV, hepatitis B and hepatitis C.

Story continues below advertisement

The latest data from the Public Health Agency of Canada suggests that of the new 1,520 HIV infections in 2020, 666 were among men who reported having sex with a man in the previous six to 12 months, representing 43.8 per cent of total cases — down from 46.5 per cent in 2018. There were 511 new HIV cases among the heterosexual population in 2020, representing 33.6 per cent of cases. That’s down from 34.4 per cent in 2018.

In Nova Scotia, as in some other provinces, men who have sex with men must be abstinent for five years if they want to donate tissues as part of a policy aimed at preventing transmission of such infectious diseases to recipients.

But the screening form, completed by a nurse at a hospice in Kentville, N.S., indicates 26-year-old Dee did not have any of those infectious diseases.

MacDonald said while Dee’s sexual orientation was listed as the reason why his tissues were rejected, no one spoke to him for any assessment, which would have revealed the couple was in a monogamous relationship for over four years and did not engage in risky sex.

A spokesman with the Nova Scotia Health Authority, which administers the Regional Tissue Bank, described on its site as the “largest comprehensive tissue centre in Canada,” declined to comment about the complaint while it is being considered by the human rights commission.

The commission reviews complaints to determine whether they should be forwarded to a hearing at the Canadian Human Rights Tribunal, which decides if discrimination occurred.

Story continues below advertisement

MacDonald is hoping the outcome will help change a policy he believes is based on outdated perceptions about gay couples who end up being further stigmatized while their grieving families are also harmed.

“I want this to be his legacy because they robbed him of being able to leave his legacy,” MacDonald said of Dee. The couple married in March 2022, nine days after Dee was diagnosed with liposarcoma, which left a large tumour in his chest.

MacDonald noted an advanced nucleic acid test (NAT) can detect HIV about seven days after someone is exposed, eliminating the need for a lengthy abstinence time frame, which he said “makes no sense.” The test is not regularly offered but is currently mandated by Health Canada for “increased risk donors.”

Click to play video: 'Organ Donation Act moving ahead in N.S. legislature'
Organ Donation Act moving ahead in N.S. legislature

Dee’s mother, Cindy Gates-Dee, said she contacted Nova Scotia Health several times after his death about ways it could improve what she sees as a discriminatory screening process for organ and tissue donation.

Story continues below advertisement

She also emailed Health Minister Michelle Thomas in January to say her son faced discrimination due to assumptions made about his behaviour while people who could have used his tissues did not get them.

Thomas responded in a letter dated Feb. 13, saying she has asked Nova Scotia Health to “identify whether the recent changes in screening protocol for blood/blood products would also apply to organ and tissue donation.”

That was in reference to the Canadian Blood Services’ decision last year to remove blood donation eligibility criteria specific to men who have sex with men. The organization updated its screening questions to focus on higher-risk sexual behaviour for everyone, regardless of sexual orientation.

“I wish to apologize on behalf of the health system for what you experienced in trying to have your son’s wishes respected, and have his organs and tissues donated,” Thomas wrote to Dee’s mother. “I hope that the actions being taken will prevent this from happening to others in the future.”

Health Canada, which enforces regulations on human cells, tissues and organs for transplantation, said it established a five-year abstinence requirement for both organs and tissues in 2003 for men who have sex with men to minimize risk of infectious diseases being passed on to recipients.

In 2017, the abstinence period was reduced to 12 months by the Canadian Standards Association (CSA), Health Canada said, adding the organization’s screening criteria to identify any behavioural risk factors are “not intended to be discriminatory against specific groups.”

Story continues below advertisement

“We will let the Canadian Human Rights Commission do its work regarding this complaint and not comment any further,” Health Canada said in an emailed response.

The CSA’s standards say that for potential donors who have died or are incapable of providing information about their potential risks, an assessment questionnaire should be administered “to a person or persons who knows the donor well enough to provide the relevant information.”

Both the CSA and its accrediting body, the Standards Council of Canada, a Crown corporation, are also named in MacDonald’s complaint. Each said it could not comment before receiving formal notification from the commission.

Canadian Blood Services, which works with organ and tissue donation programs across the country except in Quebec, which has its own agency, also said it would not comment on the complaint while it is being considered.

“Canadian Blood Services believes that risk factors for (transmitted) infections should be evaluated based on sexual behaviours and not sexual orientation and will support any work to advance change,” it said in an email.

Provinces manage their own transplantation programs. But the territories partner with certain provinces so their residents can donate organs and tissues and have access to transplants there. The Northwest Territories, for example, has an arrangement with Alberta.

While the 12-month abstinence period for tissue donation involving men who have sex with men is based on the CSA’s guidelines, the five-year abstinence policy — in Nova Scotia, New Brunswick, Quebec, Ontario, Alberta and Manitoba — is due to those provinces voluntarily being accredited by the American Association of Tissue Banks (AATB), where regulations call for the longer time frame.

Story continues below advertisement

A spokesman for Shared Health, which leads the delivery of health-care services in Manitoba, said along with accreditation of its tissue bank by the AATB, the province sends tissues for processing to a New Jersey-based tissue bank.

Canada does not have an organization that accredits tissue banks.

British Columbia does not collect donor tissue but gets it before surgeries from accredited tissue banks in other provinces or the United States, a spokeswoman at BC Transplant said.

Dr. Murdoch Leeies, an organ donation specialist and researcher at the University of Manitoba, is the lead author of an extensive review of medical literature on inequities in organ and tissue donation and transplantation involving sexual orientation and gender diverse people.

The review, published in March in the American Journal of Transplantation, says current policies create mistrust in the health-care system and add another layer of stress for grieving families.

He said in an interview that the large gap between a five-year abstinence period for tissue donation in most provinces, compared to 12 months for organsmay exist because people waiting for an organ could die but that would not be the case for those needing tissues, such as corneas.

“It doesn’t make a lot of holistic sense,” Leeies said of the five-year time frame based on regulations for an American organization that accredits some Canadian tissue banks. The fact that new HIV cases have declined among men who have sex with men in recent years should also be considered in revamping current policies, he added.

Story continues below advertisement

“It seems like this is an area of uncertainty that we’re going to need to explore with decision-makers and the tissue programs to understand if they’re just doing voluntary accreditation for no reason and then implementing discriminatory policies.”

This report by The Canadian Press was first published May 10, 2023.

Sponsored content