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January-February 2011

Would-be parents fight for publicly funded fertility treatments

Natalie Gallo

Infertile couples suffer in silence in a baby-crazed culture. Treatments are lightly regulated and cost a fortune. Why public funding could ease the burden and improve care

Illustration by Dave Donald.

Illustration by Dave Donald.

It’s just another September day in Nova Scotia—sun shining, birds chirping, a late summer breeze playing in the treetops. Only one thing is different today for Shawna Young: she is pregnant. This one fact makes the sunshine seem a little brighter, the birds’ songs just for her. It’s like carrying around a secret, a secret that makes her smile at strangers and hold her head a little higher. Just yesterday, Shawna and

her husband, Benjie, put their one-bedroom house on the market, already full throttle into planning their lives for their little one. They’d dreamed of moving into a bigger, more family-friendly home when the time came; now, it was finally here. Today, Shawna is on her way to the doctor for her 13-week ultrasound. She knows exactly what to expect: the doctor will say she’s 12 weeks and six days pregnant, and she and Benjie will get to see the little hands and feet of their miracle baby.

But something feels wrong when she lies back in the chair, looking at the ultrasound image up on the screen. There is no movement. She tries to convince herself that everything is fine, even though a nagging feeling in the pit of her stomach suggests otherwise. The nurse’s words come like a blow to the head.

“Well, you’re not 12 weeks and six days.”

“Oh, is the baby measuring a bit small?” Shawna asks, looking helplessly at the blob on the screen.

“I’m sorry,” replies the nurse. “I have no good news for you today.”

When Shawna repeats the nurse’s words to me on the phone from her home in Halifax, I hear her voice crack, and I know it’s not the quality of the connection. For any woman who has miscarried, the emotional devastation is something that lingers long after the event has passed. But for a woman who has had fertility problems and struggled through years of tests, medications, alternative treatments, and thousands of dollars in debt, the devastation is that much harder to bear.

A few days after finding out she had miscarried, Shawna went in for her scheduled “D & C”—dilatation and curettage—which refers to the widening of the cervix so a doctor can scrape tissue from inside the uterus; in this case, excess tissue resulting from the miscarriage.

“I had the distinct feeling we were going to a funeral,” she says of the drive to the hospital. “After a morning of meeting with doctors, nurses, intake people, seemingly half the people who worked in the hospital, I was taken into the operating room. I walked in and climbed up on the table. I extended one arm out straight so they could put the IV in, but they couldn’t get it in, so they had to try the other arm. So I was lying there with my legs in stirrups and both arms extended out and very bright lights shining on me. The operating room itself and the procedure to that point reminded me very much of my egg retrieval for the in vitro fertilization, and as I lay there, the tears just started streaming down my face. I couldn’t wipe them away because both of my arms were extended and being worked on. I felt so alone and such complete and total sorrow. I didn’t fight the feeling, though; I just let myself feel what I felt and grieved for the baby I was about to lose. I was not only mourning the loss of our baby, but I was really grieving for my fertility.”

At 37, Shawna was on her second in vitro fertilization treatment after a year and a half of trying to conceive naturally. The decision put her and Benjie in debt more than $20,000. A single round of IVF can cost up to $10,000, which includes costs other than the procedure fee—women also pay for the drugs they need to inject themselves with in preparation for the procedure, and these can cost as much as $5,000. IVF is currently not covered by the provincial health-care system in Nova Scotia or most provinces in Canada. In Ontario, it is funded only for women with blocked fallopian tubes—no more than 20 percent of infertility cases. Last summer, Quebec became the first Canadian province to bring IVF under its provincial health plan when it passed Bill 26, which allows funding for up to three IVF treatments for women having difficulty conceiving. Outside Quebec, IVF remains a private medical cost in most cases.

IVF involves fertilizing an egg with sperm outside the uterus. It falls under the umbrella of Assisted Reproductive Technologies (ARTs), which emerged in the late 1970s, with the first Canadian fertility clinic opening in 1983. IVF is the most effective ART: with each cycle of treatment, it’s successful 38 percent of the time for women under 35; for women aged 35 to 39, it’s successful 28 percent of the time; starting at age 40, success rates drop to 11 percent. According to the Canadian Fertility and Andrology Society (CFAS), these rates have increased by 10 percent over the last decade.

The causes of infertility are numerous, and doctors usually look at lifestyle factors first—smoking, alcohol, and drug use all inhibit fertility. But the biggest cause of infertility in both men and women is unknown, and the most common type of infertility is unexplained—doctors simply find no reason why a woman cannot conceive naturally; everything seems to be medically normal, but it’s just not happening. In Ontario, infertility is known to occur in one in six couples, and in 2008, the CFAS reported a combined total of almost 10,000 IVF procedures performed in the 28 clinics across the country. However, although it is the most effective treatment, IVF is usually not the first procedure that couples attempt.

According to Dr. Keith Jarvi, director of the Murray Koffler Urologic Wellness Centre and head of urology at Mount Sinai Hospital in Toronto, doctors often try to increase ovulation in women and the number of eggs they produce during ovulation. This is done through stimulation medications that women take for a period of time prior to the procedure, so the sperm have more targets to aim for. If the process, known as Intrauterine Insemination, fails more than once or twice, the next step may be the use of IVF.

“We take the eggs out, take the sperm out, and incubate them together in a dish,” says Jarvi. Once the eggs are fertilized, the doctors take as many embryos as they feel are necessary for optimal chances of conceiving and return them back to the woman’s uterus. If IVF doesn’t work this way, doctors perform Intracytoplasmic Sperm Injection as part of the procedure. “[With ICSI], you can take the sperm and bring it closer to its targets,” Jarvi explains. To do this, doctors take a single sperm and inject it into a single egg, (after they have been extracted from the couple), and then place the fertilized embryo back into the woman’s uterus.

The costs of these procedures ranges anywhere from $5,000 to $8,000 each, not including the cost of the drugs women may need to take at the same time. “And you’re probably going to end up doing it two or three times,” says Jarvi. “You could easily spend a compact car’s worth of money on it. It’s not Lamborghini kind of money, but still, it’s a lot of money.” The huge expense adds a financial burden to the already high emotional cost of infertility, says Shawna. “It is really unfortunate that [the decision to do IVF] has to be a financial decision.”

Beyond the financial or emotional considerations, IVF also has implications for the health-care system. Such procedures result in a high number of multiple births, for one; because IVF costs so much, doctors transfer more than one embryo at a time to increase the chances of one coming to term. Multiple births suffer more complications, and it costs the health-care system a lot to care for them. Many doctors say these multiple births end up costing the government more than publicly funding IVF treatments mandating a single embryo transfer would.

As birth rates continue to drop, many advocates, patients, and doctors alike say that provincial governments need to recognize that these procedures inflict high costs on individuals—emotionally and financially—and additional economic costs on the public healthcare system. The solution, they say, is to make IVF a publicly funded treatment.

Most women spend a great deal of their lives trying to avoid pregnancy. We are taught to practise safer sex and use condoms and go on birth control. We do these things until we want to start a family, and it’s easy to assume that as soon as birth control stops, a pregnancy will occur. We’re conditioned to expect the process to happen naturally, like turning on a light switch. And when it doesn’t, we feel frustrated, angry, and confused.

“You feel at fault because you can’t do something that comes so naturally to everybody else,” says 39-year-old Charmaine Graham, of London, Ont., who has been through 11 IVF treatments. “You’re faced with people who are parenting children and they’re going through [general] parenting angst—they’re frustrated, they’re tired, they yell, they snap—and you just would do anything for that opportunity. I just wanted to go to the grocery store with a baby like everybody else.”

Graham says infertility can be an intensely isolating experience. Not only do women feel like outsiders for not being able to do something natural—and, arguably, what many women may feel is their unique duty—but they are further isolated by constant reminders of their failure.

“No matter where you go, every single person that you meet came from somebody’s womb. That is what we do as a human species—we procreate. And so there’s no way ever to escape that,” she says. “You have a lot of feelings that are paradoxical. You’re really happy for your sister when she gets pregnant, but you also want to smash her head up against the bathtub because you can’t. It’s very hard to live with those feelings all the time.” Of Graham’s IVF treatments four were fresh, and seven were frozen (frozen fertilized eggs are stored in case a fresh treatment fails, which is less expensive than starting again with another fresh treatment). While her husband, Jim, believes the experience ultimately brought them closer, Graham remembers how taxing the treatments were on their marriage at the time.

“You have to deal with the anger and frustration you might have with your partner as a result of them being infertile, or the guilt that you feel for being infertile. And then I have to make this man who loves me live with me when I’m fucking insane going through hormone treatments,” she says. “Women become so focused on just getting pregnant, it doesn’t even become about parenting anymore. Men don’t feel that they’re married to the woman they got married to. Something has hijacked their marriage entirely.”

This is one of the most compelling things about the struggle of infertility: it affects men and women very differently. Even if a man is the one with the issue, the procedure is still done on the woman because she is the child-bearer. “They’re the ones who have to do most of the drugs, they have to do most of the invasive technologies. They’re the ones being poked and prodded,” says Graham. “A man has to masturbate to get his sperm out. A woman has to have a probe put in her vagina, with a 22-gauge needle that goes through the side of her vagina into her ovaries to withdraw the eggs. I think it’s a very separating experience for most men and women.”

Other women agree with Graham that the reminders of what they can’t do never seem to cease. Some describe difficulty attending baby showers, seeing mothers with their children in the grocery store, and even walking by the Santa Claus display in malls around Christmas. And with all of these difficult feelings comes the worst part: paying out of pocket for a procedure that is not even guaranteed to work. No one knows that better than Kerri-Lyn Jessop, 37, of Caledon, Ont., whose three IVF treatments over two years have put her more than $30,000 in debt. “Unless you’re rich, that’s a lot of money to spend to find out an answer to one question,” she says. But it’s not enough to make her want to stop trying.

“Emotionally and physically, I’m not ready to give up, but there’s only so much money in the pot.”

Cheryl Dancey, 41, of London, Ont. agrees. She had 18 IUIs and four IVF treatments, none of which were successful. “As hard as everything else is, it’s not enough to stop you from doing it again. Money is the only thing that can make you not go on.” (Since our original interview, Dancey was able to give birth to a baby girl with the help of a donor embryo.)

Dancey says if IVF was publicly funded, half the burden of the experience would be gone. “It would take all that pressure completely away,” she says. “You wouldn’t have to worry, ‘Well, if I do it, we’re not going to have the house to put the kid in.’”

Many couples struggling with infertility turn to family and friends for financial help to pay for IVF treatments, which brings up the arduous task of explaining their situation to loved ones—something that can be very difficult to do.

“People don’t believe that it’s real,” Dancey says. “They say, ‘You’re not doing it right. All you have to do is relax. So-and-so’s brother’s cousin’s wife did this and she was fine.’ People just don’t get it. Everybody’s got some stupid story that somebody that they’ve known through the grapevine relaxed, or drank a certain tea, and that’s what will fix the problem.”

“The other thing that people also do all the time is that they stop talking to you,” says Graham. “I worked at the university and I was always very open about my situation. So, I’d go missing for a few weeks and I’d come back to work and people would say, ‘Where have you been?’ and I’d be like, ‘Making babies in a petri dish.’ And so everybody knew what I was going through. And then one of them would get pregnant and she wouldn’t come to my office for nine months.”

If IVF were publicly funded, couples could go ahead with treatments privately. They would also be spared having to deal with the naysayers who think seeking such treatment is selfish.

“By the time the government decides—if they ever decide—to fund this, it will be too late for us. My time will come and go by the time that it’s covered,” says Jessop. “We are speaking up for the next group of people that are coming into this. I don’t think I will ever benefit from [it], but I might be able to help somebody else benefit.”

The Ontario government established an expert panel in 2008 to take a closer look at ARTs, especially IVF, and whether it should be funded under the province’s health-care plan. It also examined adoption: its cost and its lengthy, complicated process. The panel released its recommendations this past August, which urged the government to institute a fertility education system, provide a funding strategy for IVF procedures, and make changes to the adoption process.

Dr. Jarvi provided expert advice to the panel, which also included Dr. Arthur Leader, a professor at the University of Ottawa and a partner at the Ottawa Fertility Centre. Both doctors agree that the most important public health reason to fund IVF is to limit the number of multiple births that result from multiple embryo transfers. Leader says that transferring multiple embryos is dangerous and more of a financial burden on the health-care system than IVF procedures would be.

“What the expert panel showed was that, by limiting the multiple birth rate in Ontario, you could save the taxpayer, over a 10-year period, half a billion dollars,” he said. “Twins are more likely to have medical or surgical needs in the first four months of life. The tremendous cost associated with having high rates of twins, never mind triplets, means that caring for them is actually costing the government more than it would have cost to fund IVF for single-embryo transfers.”

One of Leader’s patients became pregnant with twins through IVF. About halfway through the pregnancy, one of the twins died in utero as a result of a congenital heart defect. “It became a highrisk pregnancy,” says Leader’s patient, Kerri Stanford, who was 34 at the time. “We knew that one of the babies wasn’t doing well and was likely not going to make it. It just meant that the whole pregnancy was very complicated and it was watched in a high-risk unit.” Those high risks, of course, entailed high costs, exponentially more than a single healthy pregnancy would have. “Economically, there is a strong argument to be made to fund fertility services,” Leader says.

Leader has another reason he believes IVF should be added to provincial health-care plans: continuity of care for patients. “One of the paradoxes of infertility is that, in almost every province of the country, it’s medically necessary to do fertility testing in order to find out why people can’t get pregnant. In other words, the health plan pays for treatments to diagnose infertility. But once the diagnosis is made, the health plan abandons people, saying it’s not necessary to treat your problem. Then, once people get pregnant, the health plan says now it’s medically necessary to care for pregnant women. There’s a disconnect.”

Months after my first conversation with Shawna, I receive an email from her. “I should be 35 weeks pregnant now,” she writes, still lamenting her miscarriage. She goes on to tell me about one of the hardest parts of dealing with infertility: the public’s misconceptions about it.

“If I had a medical condition that prevented me from being able to walk,” she said, “and there was an effective medical treatment available, society wouldn’t question whether or not I should be able to access it. When someone is paralyzed, people think, ‘Oh my gosh, I could never imagine what that would be like.’ Nobody ever thinks, ‘What would my life be like if I didn’t have my fertility?’”

Advocates for IVF funding see it as positive that the Ontario government commissioned an expert panel to look at the issue, and Quebec’s new law is definitely a step forward. But it’s taking the rest of the country a while to catch up. Medical organizations have questioned Canada’s attitude toward funding, especially in comparison to other countries around the world, many of which do provide funding. Manitoba offers couples who have undergone treatment a tax credit for 40 percent of treatment costs. British Columbia now has the Hope Fertility Fund, which provides financial assistance to residents of the province who can’t afford treatment—commissioned by the UBC Centre for Reproductive Health, the Vancouver General Hospital, and the UBC Hospital Foundation, not by the government. The Nova Scotia government has previously deemed it not medically necessary to provide funding, and the rest of the country seems to agree.

Still, supporters remain hopeful. Beverly Hanck, executive director of the Infertility Awareness Association of Canada, believes all provinces will eventually cover treatment. “I suspect what’s going to happen, and this is my guess, is that they will put it on their platform for the next election,” says Hanck. “It’s a matter of time. But time is important for some of these couples.”

Time is indeed the enemy in the infertility battle. Women feel pressured by time because fertility decreases with age, and after an IVF treatment is performed, waiting to find out if they are pregnant can be excruciating. The burden of infertility is essentially a race against time. And so far, time is winning by a long shot.

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