IVF should be a right, not a privilege

“Children by choice” is one of the rallying cries of the reproductive rights movement. Similar to American birth control activist Margaret Sanger’s claim that “no woman can call herself free who does not own and control her body,” this slogan seeks to empower women by arguing for their right to access the tools with which to control their fertility. For most women, these tools are contraception and abortion. But there is a minority of women and men—who have been largely left behind by the reproductive rights movement—for whom the tools are different. Designed to enhance instead of limit fertility, artificial insemination (AI) and in vitro fertilization (IVF) are no less necessary to those who find themselves unable to control their own bodies when they make the choice to have children.

I learned just how necessary when I was diagnosed with infertility.

After years of diligently guarding against unwanted pregnancy, I found myself very much wanting a pregnancy and unable to make my body comply. The all-powerful fertility that sex educators and doctors had warned me about turned out to be fragile, even at the relatively young age of 31.

My husband and I endured a painful two-year-long journey to conceive that took us through countless diagnostic tests, 7 a.m. blood draws and hormone injections, one misdiagnosis and subsequent drug treatment that caused drastic weight loss, months of counselling for grief and anxiety, five failed AI treatments, one cycle of IVF and two failed embryo transfers. By the time we decided to move ahead with a third embryo transfer, I felt hopeless. But then it worked and, thanks to IVF, we now have a healthy baby boy at the centre of our lives.

The experience taught me that, even with the means to pay for the care I needed, infertility left me with little control and choice over the outcome. That’s why those who face infertility need all the help that society can offer them.

In Canada, over the past 35 years, the state has wandered in and out of the fertility clinic, never entirely sure from one year to the next whether or not it has a place there. The diagnosis of infertility is widely covered by provincial healthcare plans, but only a few provinces provide some form of support for treatment, in large part due to the high cost—one cycle of IVF carries a price tag of up to $11,000, not including up to $5,000 for drugs and ancillary services like embryo freezing. And more than one cycle is often required: The live birth success rate in Canada per IVF cycle is 41 percent for women under 35 and drops to 34 percent between ages 35 and 37 and 24 percent for those between 38 and 40.

These high costs, coupled with the lack of coverage, create a financial barrier that significantly limits access. While research on this is limited, one study I saw on the subject found that only 15 percent of couples who need IVF could afford to pay for it. This means that thousands of Canadians who want to have children and build a family can’t—and don’t.

“There is a class system when it comes to accessing treatment,” explains Judith Daniluk, a professor of counselling psychology at the University of British Columbia who works with infertile couples. “Some will never be able to afford it.”

I would argue that our society has ignored this problem because it is hidden. As sociologist Ann V. Bell explains in Misconception: Social Class and Infertility in America, infertility must be verbalized for others to know it exists, and those who suffer from it often keep it to themselves, particularly if they can’t afford to do anything about it. As a result, those who speak out about it are more likely to be wealthy and white, making infertility appear to be solely a problem among the privileged. Perhaps because of this association, IVF has come to be thought of by many as a “vanity procedure,” spoken of in the same breath as cosmetic surgery, tattoo removal and orthodontics.

I would challenge anyone who thinks along these lines to read Bell’s book or the World Health Organization’s bulletin Mother or Nothing: The Agony of Infertility for a description of the impact that infertility has on women of a lower socio-economic status. Infertility is devastating for anyone. “Many people who go through it experience anxiety, depression, marital problems, social isolation and high levels of stress,” explains Daniluk.  Research has found that women who have difficulty conceiving experience similar levels of stress to those going through serious health crises, such as cancer and heart disease. Financial pressures exacerbate these issues by limiting options, leading to a sense of hopelessness.

But there is a cure: having a child. And IVF is one way to make this cure possible.

In 2016, the Ontario government moved to make IVF and other fertility treatments more affordable and accessible for Ontarians. Through the new Ontario Fertility Program, couples and single people now have access to one funded cycle of IVF per lifetime and unlimited access to AI. This is a major victory for the reproductive rights of infertile women and couples, as well as the LGBTQ community, which also relies on reproductive technology as a way to build families.

Demand for these procedures has been huge: The government limited the number of publicly funded IVF cycles available per year to 5,000 and clinics had waiting lists within weeks of the program launch. Sony Sierra, a fertility doctor at Trio fertility clinic in Toronto and the Ontario representative of the Canadian Fertility and Andrology Society, estimates that case volumes have gone up three to four times across the province.

“A lot of people had been told they really need IVF, but they couldn’t afford it,” explains Ellen Greenblatt, medical director of Mount Sinai Fertility. “There’s a lot of pent-up demand. Also, there are more ways to form families today, and some of those ways require assisted reproductive technology.”

At a recent event celebrating the one-year anniversary of the program, Ontario premier Kathleen Wynne announced that more than 6,500 people across the province had received funding for IVF and related services. It’s too early to say how many babies have been born as a result. Ontario deserves praise for making IVF more accessible, along with Manitoba, Quebec and New Brunswick. But there is more work to be done: Many patients will require more than one cycle of IVF to conceive, and fertility drugs (a considerable part of the overall cost of IVF) aren’t covered at all by the Ontario program. “There are still people who can’t afford it,” explains Sierra.

What’s more, wait-lists for treatment now hover at around one year. For some patients, this time lag may make their chances of success even slimmer.

The government has pledged to review the program at the end of 2017. For it to survive or grow amid rising healthcare costs and competing government priorities, the public will have to change the way they see infertility—not as a rich white woman’s inconvenience but as a serious health issue with complex physical, mental and social underpinnings and consequences. If I could choose the rallying cry for this movement, it would be that fertility is a right, not a privilege.

Read more: 5 things you should know before starting IVF Infertility facts and figures Your options when IVF doesn’t work