Kaeleigh MacDonald found the best way to cope with her infertility was to share her experience with others going through the same thing.
About five years ago, the 33-year-old from Edmonton was diagnosed with diminished ovarian reserve, a condition that causes ovaries to lose normal reproductive levels.
“My husband and I had been dating for a really long time — since I was 19 — and we didn’t want a family right away,” she says.
“So we travelled the world. We got our affairs in order. But by the time I was 26, I wanted to start trying for a family. We assumed since we were still so young that we should have no problem.”
Watch: What no one tells you about infertility.
After her diagnosis, MacDonald sought support online and got in touch with Fertility Matters Canada, one of the only national charities that helps people with infertility issues.
“People don’t always talk about their reproductive health,” MacDonald says. “It’s not something you bring up at the dinner table, so you end up feeling kind of isolated.”
She now has a three-year-old son and a one-year-old daughter after undergoing several IVF treatments. She also volunteers for the organization by running online support groups and writing informational material.
But the group is struggling to stay open.
“We are in dire straights,” says executive director Darlene Tozer.
“We need to find new revenue streams. We need to find other opportunities beyond our memberships and donations, which are incredibly grateful for, but we recognize it’s not quite enough if we want to continue.″
The organization is unique, MacDonald says, because it helps people in more remote parts of the country get support and information on infertility.
“If you live in the Yukon and have no access to a support group, we have online support groups,″ she says. “If you live in Toronto, we can tell you the different kinds of clinics that are in the area.″
Tozer, who is based in Moncton, N.B., says the charity also helps people seeking egg donors and sperm donors, as well as members of the LGBTQ community looking to adopt or find surrogates.
To do the work, she says, Fertility Matters Canada not only relies on donations, but memberships from clinics, professionals such as lawyers who specialize in fertility law and sponsorships from pharmaceutical companies.
“Unfortunately, over the last couple of years, we recognized that a couple of fertility clinics have not renewed their memberships and it’s getting tougher to get sponsorship money from pharmaceuticals,” says Tozer.
The organization gave up its office last year and its executives started working from home. An administrative position has also been eliminated.
Tozer says she recently had a meeting with the office of the federal health minister, but was told there was no money to assist the organization.
“They are going to do a bit a research for us to see if there are government grants that might be available to us, but they essentially told me there is no funding,” she says.
“And that’s unfortunate, because you are looking at close to six million people in Canada who struggle with fertility — that’s a big chunk of Canadians.”
The number has also doubled since the 1980s.
The office of the health minister says in a statement that it sympathizes with the difficult situation faced by Fertility Matters Canada, but infertility is a medical matter and under provincial jurisdiction.
Canada does not have universal coverage for assisted fertility treatments such as in-vitro fertilization and people can spend up to $15,000 a cycle, depending the province they live in.
Only Ontario covers the first IVF cycle, while Manitoba, New Brunswick and Quebec offer grants or tax credits to help cover some cost.
Dr. Anthony Cheung, a Vancouver-based fertility specialist, says fertility needs to be more integrated in the public health system, adding that treatments are covered in Australia and many European countries.
Cheung, also a professor at the University of British Columbia, says infertility is not considered an acute illness, so it isn’t always a funding priority.
But he says it can cause severe emotional distress and affect someone’s long-term well-being.
“Some people perceive suffering from infertility as like having cancer,” he says, adding it’s important to have networks of support.
An American study of almost 500 women found those with infertility felt as anxious or depressed as patients diagnosed with cancer, hypertension or recovering from a heart attack.
Cheung says the system in Ontario can help remove the financial barrier to fertility treatments and hopes to see it become more universal.
“I think it’s a good thing,” he says. “How long is it going to last? I don’t know, but I hope it does.”
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