Amar Karma Organ Donation Society's annual Give a Heart event features a variety of fun events for members of the South Asian community of all ages. Its Valentine’s Day theme doesn't promote romantic love exactly, but something a little broader, says Loveen Kaur Gill, the organization's founder. “We tie it to a love for humanity.”
But perhaps the most important moment of the event is when attendees who have turned 16 in the previous year stand up in front of their community and declare that they’ve registered as organ donors.
“When children speak, we have found that families tend to accept the message better,” Kaur Gill says. That message is about increasing the rate of organ donation in Ontario, particularly in communities such as this South Asian one — communities which have traditionally seen lower-than-average rates of donor registration. And the resistance to it in some communities stems from an overlap of religious misconceptions, historical traumas and other factors that raise concerns about the process and its implications.
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Overall, Ontario is among Canada’s provincial leaders in increasing organ-donor registrations. With a rate of 19.5 donations per million, the province is well above the national average of 18.5, according to a recent report from Canadian Blood Services. But across the country about 280 people still die each year while waiting for an organ, according to Health Canada, and about 40 per cent of those deaths are in Ontario. And both the provincial and national organ donor rates are still below the 28 per million seen in the United States or 40 per million in Spain — currently the international leader in donations.
“On average every three days one person [in Ontario] dies just waiting for a transplant, so we certainly have room to improve,” says Ronnie Gavsie, president and CEO of the Trillium Gift of Life Network.
One path to improvement is looking at the geographic disparity between regions that have higher and lower donor rates. Gavsie says that it is smaller communities, “where there tends to be less of a turnover in residency, you will see a higher [donor] registration rate.”
Garson, a town of about 13,000 outside Sudbury, fits this profile. At an organ-donor registration rate of 50 per cent, it’s currently one of the higher donor areas in the province, with North Bay, Parry Sound and Sudbury topping off Ontario’s list at 53, 53 and 51 per cent respectively.
More populous GTA cities tend to skew far lower in donor registration rates, such as Mississauga (20 per cent), Brampton (17 per cent) and Markham (14 per cent). The GTA overall has an average registration rate of 23 per cent; Ottawa and Hamilton are both at 36 per cent.
Increasing registration rates is essential because it's only a subset of those who do register to become organ donors who are actually able to make that donation: even a registered donor isn’t necessarily an eligible one. As Dr. Peter Nickerson, a transplantation medical adviser for Canadian Blood Services, says, eligible donors are “rare gems” because far fewer of them exist than many of us may realize.
“If we actually look at all deaths that occur in the country" he explains, "it turns out that there’s only two to three per cent of all deaths where patients could be an organ donor.”
In addition to disparities based on population density and a city's size, there are also lower organ donation rates in some Ontario communities with higher concentrations of certain ethnic groups. In Richmond Hill, for example, 17.5 per cent of residents are of Chinese descent, according to a 2011 municipal demographic survey. Markham’s population is 38 per cent of Chinese descent and 19 per cent of South Asian descent.
According to research released last year by the Institute for Clinical Evaluative Sciences, 8.9 per cent of Ontarians of Chinese descent and 12.8 per cent of those of South Asian background were registered as organ donors, compared to 25.4 per cent of the overall population. The researchers also found that Chinese and South Asian Ontarians were less likely to consent to donation upon death than the overall population. Studies done in Alberta and British Columbia have had similar findings.
There are several factors that contribute to lower registration rates in some communities, says Kaur Gill.
“Most religions actually do allow organ and tissues donations, but these are just the taboos created by people because most of these religions are centuries old so people have formed their own superstitions.” Misconceptions Kaur Gill's non-profit group, which promotes donation in South Asian communities, works to dispel.
In addition to religious concerns, some groups have suffered historical traumas that make organ donation worrisome – some of the residents in lower-donating communities may come from countries with forced organ retrieval, for instance. It is illegal to buy or sell organs in India, to take one example, but several news outlets have reported that a “red market” for organs and blood exists because of internal shortages and international transplant tourism.
The Institute for Clinical Evaluative Sciences’ research also found that some people in Chinese and South Asian communities may simply be unaware that they’re able to register in advance as organ donors, which could explain why the gap between those two communities and the overall population for registration was lower than that for donation at death.
In some communities, there is also a generational language barrier to contend with. While online registration can be completed quickly, older Ontarians may not be comfortable with it, Kaur Gill says, or have easy access to a computer. In the future Amar Karma hopes to have a dedicated office space for bringing people in and helping them register online, she says, along with translators and pre-translated educational materials on donor policies and registration.
Part of Trillium’s efforts involve communicating with faith and community leaders about organ donation, Gavsie says. For example, the organization collaborates with the Council of Agencies Serving South Asians on the joint Gift of Life campaign, which works with more than 40 community groups to spread the word about organ donation.
Trillium has also worked with the province’s Chinese community through groups like the Chinese Renal Association, and with Muslim community agencies, during outreach events held during Friday prayers.
“We have to come at it from varied viewpoints,” Gavsie says.
But despite the barriers, progress has been made. Kaur Gill says that when she started Amar Karma there wasn’t a larger organization she could connect with for resources and support.
“It’s been a decade and there are now many different groups,” Kaur Gill says, including Ahmadis for Organ Donation, Amar Arts of Life and the Council of Agencies Serving South Asians. “But a lot of work needs to be done still. We’re still getting there.”
Terri Coles is a freelance reporter in St. John's, Newfoundland and Labrador. She covers national and local news, politics, health, food and drink, and travel.