Gideon Forman. Photo by Robin Hart Hiltz.

That Gideon Forman is an activist should come as no surprise. The child of New York peace activists, he spent his 1960s childhood handing out leaflets around his Greenwich Village home.

What is surprising is that this wiry man in his 40s has become one of Canada’s best environmental strategists and led a group of doctors into a head-on battle with a powerful chemical lobby—and won.

Forman is executive director of the Canadian Association of Physicians for the Environment, a small group of environmentalist doctors. At least it was small. Since he took the job less than five years ago, membership has ballooned from 450 to over 5,000. Why the surge? Quite simply, the group set out on an ambitious and high-profile campaign for public health—not about hospital funding or the number of doctors in Canada, but about preventing the sorts of pollution that harm public health.

“The idea of doctors protecting the environment makes sense to people,” Forman says. “Also there’s been huge interest in the pesticides campaign.”

Forman left New York’s hippie enclave and moved north when he was just eight years old. It was the era of Pierre Elliott Trudeau and socialized health care. Canada sounded good to his peacenik parents, and the family left crowded Manhattan for the cleaner streets of Toronto. As he grew up, he followed his parents’ example and got involved in the peace movement. It was there that Forman’s greatest asset came to light. He’s able to see connections between groups and causes and bring together as allies groups that never collaborated before. With the Canadian Peace Alliance in the early 1990s, that meant reaching out to social justice groups involved in East Timor.

As that decade came to an end, Forman was working with Strategic Communications, a company that specializes in campaign strategy and fundraising for unions, charities, and non-profits. It was progressive work, but Forman craved the chance to focus on one campaign that mattered. After a decade at Strategic Communications, he was finding the work “too diffuse,” he says. “I was working on the Canadian Cancer Society, World Wildlife Fund, and gun control, and a bunch of stuff. I really wanted to specialize […] I really wanted to throw myself into one thing. Increasingly in my late 30s, the environment became my passion.”

He began volunteering with the Toronto Environmental Alliance, working on a city-wide ban on cosmetic pesticides. It was a good fit, and when a job opened up to lead the Canadian Association of Physicians for the Environment in 2004, he jumped at the chance to head an organization already working on pesticides and other toxic issues.

What he jumped into was a vitriolic battle with doctors and environmentalists on one side and pesticide applicators and chemical companies on another. Public support for a pesticide ban was good, but the campaign needed a little extra push. He came up with a brilliant strategy, and called the Canadian Cancer Society.

Groups like the Canadian Cancer Society traditionally focus on research for cures more than on fighting environmental causes. But as causes of cancer other than smoking became more and more clear, the society became more environmentalist. Forman recognized this and worked to enlist the society’s support. Such a large and reputable group brought significant weight to the fight.

The strategy’s success became evident in London, Ontario, where the city council was set to vote on a pesticide ban. It was going to be a close vote, and the pro-ban camp needed to sway just a few councillors to get it through. Forman met with the local head of the Canadian Cancer Society. Would their members contact their councillors and tell them they wanted the pesticide ban?

“I asked her, could we call their folks and ask them to make this one political act,” he says. She responded that they only had a “small” base of volunteers in the community, perhaps 2,000. Forman’s jaw pretty much hit the floor. A volunteer base of 2,000 in a community is huge for any group. “She said yes. It was going out on a limb for them.”

It worked. The target councillors got more than 300 calls a week.

“That’s huge,” Forman says. “It’s like carpet-bombing for a small community.”

The pesticide ban passed easily. With the help of Forman’s umbrella approach, the Toronto Environmental Alliance, the Canadian Cancer Society, and many other local and national groups have brought about cosmetic pesticide bans in Ontario, P.E.I., New Brunswick, Nova Scotia and Quebec. Today the focus is on Edmonton and Calgary, which Forman describes as “the gateway to the West.”

While he’s been wearing the mantle of Captain Pesticide Ban for more than half a decade, he’s not a one-issue wonder. Forman and CAPE are also busy on other issues, particularly climate change and green energy. Bringing the umbrella approach to the table and uniting doctors, nurses, the Canadian Cancer Society, the Canadian Lung Association, and other groups, they’re going to be formidable. But what else could Forman do?

“Climate change may be the defining issue of our generation,” he says. “Not being involved in it would be like not being in the Vietnam War issue in the peace movement of the 1960s.”

Illustration by Dave Donald.

Dear Progressive Detective: I’m an HIV-positive Canadian, and I’ve heard troubling stories about people being criminally charged for transmitting the disease. Can that happen here? What are my rights and responsibilities under Canadian law?

Under Canadian law, criminal charges can be laid if an individual does not disclose his or her HIV-positive status prior to engaging in certain activities, including sharing needles. While there are no specific laws regarding HIV transmission, charges of criminal negligence causing bodily harm, aggravated assault, and even murder have been laid. This isn’t happening only in Canada, but many say the number of HIV-related criminal cases here is rising, and has been since 2000.

Of more than 60 cases in the past decade, however, Johnson Aziga’s first-degree murder trial has easily garnered the most attention. Six years after the Ontario man’s 2003 arrest, the jury’s guilty verdict made history as the first murder conviction in a criminal case involving HIV transmission. Aziga had infected seven women with HIV; two died of AIDS-related lymphoma during the trial. Additionally, Aziga was guilty of 10 counts of aggravated assault, prompting Crown prosecutors to proceed with a dangerous-offender application. Defence lawyers are currently appealing the application, and Aziga won’t be sentenced until it’s resolved sometime this spring.

In the meantime, groups such as UNAIDS and the Ontario Working Group on Criminal Law and HIV Exposure are worried. Both are currently assessing whether criminalization, in the long run, will achieve criminal justice and prevent the transmission of HIV—or if it will undermine human rights and public health. If Canada starts using criminal law as a blanket solution to HIVrelated sex offences, it may be a slippery, and troubling, slope, say the groups. For instance, HIV-positive women have a 30 percent chance of transmitting the virus to their child during pregnancy, delivery or breastfeeding. Should they face criminal charges?What about women and girls who do not disclose their status in fear of violence or abandonment?

Because of all these factors, UNAIDS proposes that criminal law only be applied to cases of intentional transmission. They also suggest that, as an alternative to criminal law, governments further expand programs promoting education, counselling, support, and other proven forms of HIV prevention.

Nina Arsenault. Illustration by Chris Kim.

Nina Arsenault has spent a fortune changing her appearance from male to female. The 37-year-old used to work in the sex trade, but now supports herself as a playwright, performer, and motivational speaker to queer youth. Her one-woman show, The Silicone Diaries, recently had a second highly successful run in Toronto, was later performed in Montreal (where This caught up with her) and will open in Vancouver next year.

THIS: Where did you grow up?

ARSENAULT: In Beamsville, Ontario, in the Golden Horseshoe Trailer Park. It was a really tight-knit community. My memories of it are just great. But we moved when I was about six to a house in Smithville. It was very difficult to make friends because I was so feminine. Growing up in the trailer park and going to school with those kids, they always knew how girlish I was. With everyone on top of each other, you have no choice but to accept people. But being the new kid, it was very, very difficult to make friends. I have been a bit of a lone wolf all my life.

THIS: In The Silicone Diaries you talk about seeing a female mannequin in a store at age five. What was it that affected you that day?

ARSENAULT: I think just the harmony and symmetry of the face spoke to me. I knew that I was a girl inside but I had this boy body. Then, for my visual gaze to rest upon a face that was a sculpture of a woman’s face, I just seized on that as a child. It affected me. The perfection of it.

THIS: When did you decide to begin plastic surgery?

ARSENAULT: About age 23, but I didn’t have my first procedure until I was 25.

THIS: What did you have done?

ARSENAULT: At first just transsexual procedures to feminize myself. It got to a point where I looked as much like a normal woman as I possibly could. However, I still had masculine features. It was really traumatic on a daily basis to see those features. So I made the decision to really push the cosmetic procedures, knowing I would no longer look natural. That I would start to look plastic and artificial.

THIS: Like a mannequin?

ARSENAULT: Yeah. But I can’t say at the beginning of the journey I was trying to look like a mannequin or a Playboy bunny. I was just trying to be a woman.

THIS: Did you literally have 60 surgeries?

ARSENAULT: There were actually more. Some were just procedures, like a lip injection.

THIS: When was the last one?

ARSENAULT: In 2006.

THIS: How much did they cost?

ARSENAULT: Upwards of $200,000.

THIS: How did you afford that?

ARSENAULT: I was working in the sex trade and made an incredible amount of money so quickly there.

THIS: Men like “shemales”?

ARSENAULT: Yeah. In terms of supply and demand, there just aren’t a lot of us, but there’s a lot of interest. The first day I put my escort ad in the paper, I had 250 calls. I don’t think that’s something that’s spoken about that openly amongst otherwise heterosexual men. I could have worked from morning until night if I had wanted to.

THIS: What was it like working in the trade?

ARSENAULT: It was physically very tough. And I only did oral, no fucking.

THIS: A lot of transgender women work in the sex business. Why is that?

ARSENAULT: It’s one of the few places you can get work and feel safe. If you’re visibly transgender you’re going to be one of the most disenfranchised and disadvantaged people in culture.

THIS: You have two graduate degrees, right?

ARSENAULT: I do. But it’s tough to get straight work. You can’t imagine the amount of transphobia out there.

THIS: How long have you been out of the trade?

ARSENAULT: About three years. I support myself now as a performer.

THIS: In the play you mention that you have had your testicles removed. But you kept your penis. Why was that, if your goal was to be as close to a woman as possible?

ARSENAULT: I never knew what would happen to me financially so [if I still had my penis] I could always return to the sex business.

THIS: What has the play done for you?

ARSENAULT: It has been an incredibly healing ritual. I think I wrote it because I had a lot of emotional angst and suffering that I needed to express, that I needed someone to bear witness to. It makes me stronger every time I perform it.

THIS: Do you feel 100 percent female now or still a bit male?

ARSENAULT: I’ve always known I was a woman but I was socialized as a male. I have some qualities people see as male—I’m an aggressive thinker—but my core is definitely female.

THIS: Do you feel beautiful enough now?

ARSENAULT: I don’t work on the outside anymore. I concentrate now on inner work.

THIS: Any more surgeries ahead?

ARSENAULT: No. Not until I start to really visibly age.

Trailer for The Silicone Diaries:

Photo by Joanna Pecha

On March 18, 2000, Terence Young was at home catching up on the weekend paper when his 15-year-old daughter, Vanessa, came to ask his permission to go out with some friends that evening. Exhausted and not relishing the idea of another conversation about Vanessa’s curfew time, Young asked her to wait until after dinner. There was nothing remarkable about it.

But as Vanessa turned to leave, she suddenly went limp and collapsed, her head making a loud thump on the carpeted floor. Young ran to her, calling out to ask whether she was okay, thinking momentarily that it could be a joke, an overdramatic gesture by his teenage daughter. It wasn’t. As she lay motionless on the floor, Young frantically felt for a pulse, finding the spot on her neck where his first-aid training had taught him to press his fingers, but there was nothing. An ambulance rushed Vanessa to the hospital, and an exhausting, haunted night followed as the family kept vigil in intensive care. The next day, Vanessa Young died.

Her cause of death was later determined to be cardiac arrest, caused by the effects of Vanessa’s bulimia nervosa and possibly an undiagnosed underlying heart defect. But there was another factor: Vanessa had been prescribed a drug called Cisapride—better known by its trade name, Prepulsid—to assist her digestion and prevent vomiting. Terence Young was later to learn the drug had been linked to irregular heartbeats and other cardiac problems. In July 2000, Janssen-Pharmaceutica Inc., a subsidiary of drug giant Johnson & Johnson, voluntarily pulled Prepulsid from U.S. pharmacy shelves. In August 2000, Health Canada pulled it from the Canadian market. On April 24, 2001, a coroner’s jury concluded that Vanessa Young’s arrhythmia and cardiac arrest resulted “from the effects of bulimia nervosa in conjunction with Cisapride toxicity and possibly an unknown cofactor such as congenital cardiac defect.”

The potential danger of Prepulsid was known, but key information about the drug didn’t make it to the right people at the right time. Eventually the right decision was made—but it was too late for Vanessa Young.

Canada’s drug-approval process suffers some serious flaws. The proceedings lack transparency; scientific data often goes fully or partially unpublished; once on the market, approved drugs seldom receive long-term monitoring for adverse effects; compared to other countries, drug labelling is less rigorous; and the whole process is paid for, in large part, by the same companies it is supposed to be regulating.

To be fair, Health Canada, the ministry responsible for approving pharmaceuticals, is often in a difficult position: patients and doctors want effective treatments made available quickly, but the department’s job is to thoroughly test drugs for safety, which takes time. Speeding drugs to market and protecting public health are two mutually exclusive goals, afflicted at every stage by interests that are often financially, and sometimes emotionally, vested. And at every stage, the pharmaceutical companies themselves are there, embedded in the approval process.

The result is a system with conflicting loyalties, bizarre blind spots, and, sometimes, dangerous outcomes. Why is it that Canada lags so far behind in providing an open, accessible drug-approval process? I sought out some of Canada’s leading experts on health policy and drug safety to try and understand what in our drugapproval system is broken—and how we can fix it.

Part of the problem of understanding Canada’s drug-approval process is that so much of it takes place behind closed doors.

“The way that we deal with drug approvals is actually quite different than the U.S., in that theirs is a much more open process,” says Dr. Barbara Mintzes, assistant professor in the department of anesthesiology, pharmacology and therapeutics at the University of British Columbia. When the U.S. Food and Drug Administration, for instance, approves a drug for the market, the full review report is published online. Expert advisory committee meetings are open to anyone and transcripts are published on the FDA’s website. The public is invited to submit input, and scientific reviewers’ comments are also made public. Almost none of that happens in Canada.

Dr. Joel Lexchin, a professor at the School of Health Policy and Management at York University in Toronto, agrees that lack of transparency is a problem.

“The FDA demands that drug companies submit the raw, clinical data,” says Lexchin. “Then they will do their own reanalysis of the data to make sure that the way the companies analyzed it is appropriate.” Drug trials in the U.S. are also catalogued with redacted information in an online registry. “Not only do you know what trials were started but you’ll be able to see what the results of those trials are,” says Lexchin. “Health Canada doesn’t require the posting of trial results.” In contrast, the comments of Health Canada researchers reviewing drug company applications are never made public. In fact, the public may not even find out that a drug is under review.

“The drug-approval process in Canada is secret,” says Mintzes, “in that when a drug is being considered for approval, there’s no announcement to the public by Health Canada to say that’s happening. It’s up to the company whether or not they want to publish the clinical trials [they submit] and often they will decide to publish only a subset of their studies.”

Health Canada’s approval process, then, is a kind of black box: drugs go in one end, and some emerge at the other, but what exactly transpires inside to influence that decision is unclear. (Health Canada’s only response to interview requests for this story was to refer me to its website.)

Many critics say that money exerts too big an influence on approvals. The biggest culprit is user fees, in which pharmaceutical companies pay the government to fund the approval process. User fees were introduced in 1995, partly in response to federal budget cuts, based on the idea that, because they benefit from having their drugs for sale, drug companies should shoulder some of the cost of approving them.

“I think this is a mistake,” says Lexchin. By 1999, the Therapeutic Products Directorate, the Health Canada department responsible for assessing drugs’ safety and efficacy, got close to 70 percent of its budget from the companies it was supposed to be regulating. Today, Lexchin claims, it’s about a third, though recently proposed regulations from Health Canada aim to cover 50 percent of TPD’s budget with user fees. At that level, critics question who’s actually setting the agenda—the pharma companies or the public interest?

“User fees are totally inappropriate,” says Terence Young, Vanessa’s father, who is also a Conservative MP in Oakville, Ontario, and founder of the advocacy and research group Drug Safety Canada. “They create a situation where a drug reviewer feels that the company is like a client, that they should be working fast to get this drug approved because these companies are paying up to 50 percent of the cost of having drugs reviewed for approval. That is an inappropriate relationship.”

After the death of his daughter, Young became a fierce critic of the pharmaceutical industry and wrote about the civil and classaction lawsuits subsequent to Vanessa’s death in his book Death by Prescription. He echoes the sentiment—common enough to have become cliché—that drug companies have put profits above patients.

“Big Pharma’s profits are multiples, in most cases, of other industries,” says Young. “You cannot overstate their influence on modern medicine. We spend more money on pharmaceuticals, both prescription and non-prescription, than we do on doctors.”

In Canada, the effect of user fees is not just that it makes the drug companies clients of Health Canada, expecting value for money; the user-fee structure also influences approval deadlines. The 2004 User Fees Act gives Health Canada a set timeline to approve new drugs; if the agency misses its deadline, there are financial penalties: user fees for the following year are cut. “If you go, say, 20 percent over deadline, then next year the user fees are going to be cut by 20 percent,” says Lexchin.

That pressure to approve, says Young, inevitably influences the decisions of Health Canada reviewers. “Drug reviewers should not feel that their job depends on, in any way, approving a drug,” he says. “You approve a drug when you believe it’s effective and safe,” he says. “You don’t approve it by any given date. And if it’s doubtful, you don’t approve it.”

Lexchin and Young both argue for the elimination of user fees, to make the whole process publicly funded and cut down on industry influence. Young proposes a mandatory levy on pharmaceutical companies so they still fund the process, but without the strings attached.

Once a drug is on the market, additional problems crop up: follow-up research on drugs is relatively rare, and drug labelling is inconsistent.

With few exceptions, once a drug reaches the market and is being prescribed routinely by doctors, there is no system evaluating the long-term effects or adverse reactions for prescription drugs.

“Health Canada, at this point, doesn’t have the ability to require companies to undertake post-market trials; all they can do is ask companies to do it,” says Lexchin. He draws attention to a Health Canada policy called Notice of Compliance with Conditions that approves the drug but requires further testing. “They will approve it on the requirement that companies undertake additional trials to show that what looks promising actually is promising.”

But there’s no reporting on the progress of meeting those conditions. “You have drugs that were approved nine years ago under this policy that still haven’t met their conditions, and you can’t find out why because it’s considered confidential,” says Lexchin. “With the cancer drug Iressa, the trials showed it didn’t work, but Health Canada still left it on the market.”

Lexchin believes it’s probably still on the market because some cancer doctors think that, although it doesn’t work statistically, it might work on individuals. “We’re always dealing with statistics,” he says.

Monitoring of adverse drug reactions across the country is largely confidential. Young says it’s meaningless: “Health Canada never insists follow-up studies be done; they don’t even call the drug company back and say, ‘Did you do those studies?’ Because they get approval, and it’s open season.”

Pharmaceutical labels are notoriously difficult to read, and potential side effects or drug interactions get lost in a sea of technical and legal language. “They’ll say, ‘See look, here on page 19, right near the bottom it says you shouldn’t take it with grapefruit juice, so don’t say we didn’t warn you!’” says Young. “The labels are written by lawyers, for lawyers, to confuse. They should issue effective safety warnings in plain language so patients and doctors will know when a drug is safe.”

To try and reform some of the problems he and many doctors see with the Health Canada drug-approval regime, Young has tabled a private member’s motion to create an independent drug agency that focuses purely on safety. “If Air Canada had a crash of one of their planes, you wouldn’t ask Air Canada to investigate the crash. So when a drug company has a crash of its drug, like Prepulsid, why would we ask them to investigate their own crash?” he asks. “Prescription drugs used as prescribed in hospitals with no error are the fourth leading cause of death in our society. That’s why everybody has an interest in this.”

While the picture is troubling at the federal level, experts say provincial drug-review bodies do a better job of sorting pharmaceuticals by safety and efficacy. Because the provinces bear most of the cost of providing health care through provincial health plans, they have traditionally done a better job of prioritizing drugs that actually work well, since they don’t want to pay for ineffective treatments. Even so, the provincial bodies suffer some of the same problems of transparency and accountability.

Once Health Canada has approved a drug, the second level of screening is the Common Drug Review, a body funded jointly by the federal government and the provinces. There, a group of experts examines new drugs coming to the market. The provinces, though their processes vary, are responsible for deciding what drugs will go on pharmacy shelves, how much they will cost, and how to best use provincial dollars to pay for them.

“What they will do is look at that drug and compare it to other treatments in its class. They will determine whether the drug is costeffective to be used by the provinces,” says Alan Cassels, a drug policy researcher at the University of Victoria’s faculty of human and social development.

“Health Canada might review a dozen cancer drugs and say they’re all safe and efficacious. But that doesn’t help the provinces decide if they should fund it or not,” says Cassels. “And that’s really the information the provinces need in order to make decisions about whether they should be covered.”

“Health Canada’s standard of efficacy is so low that all you have to do, because of so-called commercial rights, is prove that your new drug works slightly better, even one percent better, than placebo and you can get it approved based on efficacy,” says Young. “The provinces, on the other hand, because they’re concerned with money and the cost of the drug, they actually demand a higher standard of efficacy than Health Canada.”

Two projects are trying to address some of these problems, to make at least part of Canada’s drug-approval process more transparent and open to the public.

Set to launch this spring, the pan-Canadian Oncology Drug Review, or PCODR, is a national review board specifically for cancer drugs. Funded by the provinces (except Quebec, which opted out) PCODR will make recommendations to the provinces on which cancer treatments would be most effective to fund. Notably, the PCODR review process will be much more open and transparent than the current structure.

“I’m very pleased that PCODR is going to include patient representatives,” says Dr. Chuck Blanke, head of medical oncology at the B.C. Cancer Agency and PCODR steering committee co-chair. “Everything is going to be as transparent as possible. Reviews will be posted on the website and there will be invited commentary from pharmaceutical companies, but also from patients and patient-advocacy groups.”

The Therapeutics Initiative is another example of an effort to pry open the approvals process. The initiative acts as an independent drug bulletin. Researchers look at the clinical trial evidence of safety and effectiveness of drugs after they’ve been approved for marketing, and the “independent” part is what’s key. “With independent drug bulletins, there’s a commitment not to have any financing or advertising from pharmaceutical manufacturers,” says Mintzes, who does research for the group.

Mintzes agrees that the provinces generally have a more transparent, better-informed drug-approval process. The Common Drug Review, she says, has improved the situation because provinces can share the cost of research, eliminating expensive duplication. “I think it’s been a big advance, and useful particularly for the smaller provinces, not having to review the same scientific data separately. Recommendations are posted on the Common Drug Review website, so it creates a situation of greater trust.”

Time constraints remain a problem, however. “Clinical reviewers are being asked to do a full systematic review within a short time frame of six weeks,” says Mintzes. “That’s a pretty short period of time for the depth of the report being expected. They get the same pressure from industry in terms of drug approval for marketing—pressure for the decisions to be made very quickly.”

And like at the federal level, technical details are still bound by confidentiality agreements. “Which is crazy,” says Mintzes, “if you think that this is evidence of potential for benefit or harm of a pill or medicine that a person is actually going to take. Those people, and the doctor who is recommending it, and the whole community, should have access to the full body of scientific evidence.”

Pharma companies generally come across as the villain in these stories, and for good reason: these are large, multinational corporations that reap huge profits exploiting government-aided monopolies on life-saving drugs. Stories abound of Big Pharma wining and dining doctors to cajole them into prescribing more. Of flying them to Caribbean resorts for what in the industry are called “continuing medical education” sessions, but which are actually just marketing junkets. Of drug-company sales representatives quietly persuading doctors to prescribe “off-label,” for conditions the drug wasn’t originally intended.

But experts say that what the pharma companies don’t do can be just as harmful to patients.

Fewer than 10 percent of new drugs are considered “breakthroughs” that substantially improve efficacy or attack a disease with a novel approach. The rest of the business consists of making slight tweaks to already-successful compounds. “It’s always these ‘me too’ drugs,” says Cassels. “You have a product, and if you modify a few molecules you can come up with your own version that’s almost the same but different enough so that you can get your own patent. ‘Me too’ drugs … are much less expensive to develop.”

“There are lots of diseases out there that we just don’t understand enough about,” says Lexchin, “and putting all your money into looking for drugs that are actually going to cure something—when you’re dealing with processes that are not well understood—is a big gamble that drug companies don’t want to take. So they’re going to go for, in general, the easy processes for new drugs, rather than looking for these real major breakthroughs.”

Frustratingly, there have been breakthroughs in Canada that, because they aren’t patented—and therefore are unlikely to be highly profitable—struggle to find funding even to finish clinical trials.

For example: dichloroacetate, or DCA, an inexpensive substance that has been used for decades to treat metabolic disorders. Researchers at the University of Alberta believe it could be used as an effective treatment for many forms of cancer, too. Research has shown that DCA can cause regression in several cancers, including lung, breast, and brain tumors. The next step is to run clinical trials on human cancer patients. But these trials may have to be funded by charities, universities and government. Drug companies aren’t interested, because without a patent, there’s little money to be made.

“Because drugs tend to be developed by for-profit companies, they’re only interested in products where they’ll have a monopoly for whatever the patent period turns out to be,” says Lexchin. “If they’re going to put all this money into it, then they’re going to want to be sure that nobody else can make that drug for whatever that patent period is. These things tend to be orphans.”

As Cassels confirms, “So much of what drives drug discovery is the ability to patent stuff. If they discovered that apple seeds cured cancer, no one would ever hear about it. Sad, but true.”

It doesn’t have to be this way. Despite the seemingly insurmountable obstacles facing those who would like to see a more open, transparent drug-approval process, the more engaged the public is through knowledge and dialogue, the better chance we have in creating a fully accountable process.

The experts concur that a more transparent, independent drug-approval process would raise Canada’s drug-approval system to levels already attained by many European countries and the U.S. One thing is for certain: an approvals process funded largely by the pharmaceutical industry itself is unacceptable and represents a threat to patient safety.

Prioritizing efficacy and thorough, truly independent safety testing will help create a situation of greater trust. Research focused on developing better drugs through patent reform is not an outlandish gamble, and should be recognized as inherent to the pharmaceutical business model and supported by government regulation. Safe, effective drugs are an integral part of our health-care system. But the current approval process is needlessly secretive, incomplete, and vulnerable to private interests. What’s at stake is not simply the public’s right to know, or wasted government spending, but the health and well-being of millions.

Creative Commons photo by Flickr user Striatic

I’m not afraid of labour.

I’m not afraid of the intense pressure of my uterus contracting, tightening, pushing…

My cervix slowly dilating… Once open zero centimetres and currently stretching to a whopping 10 centimetres? Bring it!

I’m not even scared about pushing my baby into this world and the likelihood of my vagina tearing.

What I am terrified of is being induced.

There are a couple ways of inducing labour which, when applied to a healthy mother with a low-risk pregnancy, usually happens because she has gone over her “due date.” From what I can tell, more often than not, they cause problems for both the mother and baby.

The most common medical ways to induce labour is with synthetic drugs oxytocin and prostaglandin. Prostaglandin-mimicking drugs like Cervidil and Prepidil are used to thin the cervix and oxytocin-imitating drugs like Syntocinon or Pitocin are used to bring on contractions through intravenous injection.

Some of the reasons why I have no interest in being induced this way:

• While Cervidil is inserted like a tampon and Prepidil is a gel, Syntocinon and Pitocin are given intravenously. Being hooked up to an IV limits mobility making natural pain relief (bath, shower, moving around) more difficult.
• Pain relief is especially important after an induction because as if natural labour didn’t hurt enough, these drugs cause unnaturally strong contractions, often leading to what is known as the cascade of interventions.
• Induction in this way can cause fetal distress (depressed fetal heart rate patterns and decreased oxygen availability.) This often results in the use of forceps, vacuum extraction or C-section—all part of the cascade.
• The unnatural contractions means a woman is more likely to use pain medication (ie: an epidural, a common next step in yes, the cascade…)
• Having an oxytocin drip like Syntocinon or Pitocin, will usually mean continuous fetal heart monitoring. This makes going into the shower or tub for some natural pain relief (warm water) impossible.

I think when my baby’s ready to come out, she’ll come out. They predicted she’d be six pounds at birth, so I would be more than happy to give her a little more time to bake in this oven. If there is plenty of amniotic fluid left, and the baby is not under stress, there’s no need for her to be born so immediately.

It’s important for people (hello, grandparents!) to realize the due date means very little and is only an estimate. It assumes that all women run on a perfect 28-day cycle and that we all ovulate at the same point in that cycle. But that’s not the case.

Only something like three to five per cent of women deliver on their anticipated due date, and most of the time doctors will wait  between seven and 10 days before insisting on induction.

At my last appointment , I talked to my doctor about what would happen if I went over my due date (February 9 — yesterday!). She said she’d give me a week and after that, yes, she’d like to hook me up to an IV, and likely give me Syntocinon.

She was pretty responsive when I asked if there were alternatives to an intravenous intervention. We sorted out the fact that I did not want to be hooked up to an IV unless it was absolutely necessary and she said the alternative could be Cervadil. But if Cervadil’s job is to thin my cervix; at 37.5 weeks it was already 80 percent effaced, I’m not sure what the point is.

I was also surprised and hugely relieved when she told me I could, of course, decide not to have the induction so soon, bringing me closer to 42 weeks if I wanted. I would have to schedule regular non-stress tests to make sure everything was okay in there, which was fine by me.

Not every woman realizes that while the doctor might like a patient to deliver no later than a week after her due date, and if there are no medical complications that would make induction necessary to save the baby/mother’s life, whether or not to be induced really is the mother’s decision.

Luckily, sex is the best drug

There are perfectly natural ways to rustle up a little prostaglandin and oxytocin. Why not bring on labour the way this whole pregnancy thing started?

Semen is the most concentrated source of prostaglandins that exists. The synthetic Cervidil and Prepidil can’t compare. These prostaglandins that occur naturally are not associated with the host of potential problems that come along with the other stuff—won’t cause fetal distress, a ruptured uterus, unnaturally painful contractions etc. Getting some semen on your cervix will help it thin—a necessary step in labour.

Breast stimulation, which goes quite nicely with intercourse, releases oxytocin. Orgasms do the same. When oxytocin is released the uterine muscles contract! That sounds a little more fun than an IV.

In the end, the baby will usually come out when she’s good and ready. Who would want to leave the comfort of a warm, cozy womb anyways? Take your time, baby.

Sources: Ina May’s Guide to Childbirth. While this book has largely succeeded in helping me feel worse about delivering in a hospital as opposed to at home, it has been a great resource, one I relied on heavily for much of the information in this blog post.

When to cut?

Going into the delivery room, you might have decided who was going to cut the umbilical cord. Will the doc do it, or is it something Daddy wants to do?

We often think about who is going to cut the cord, but give little regard to when the best time is to do it. Many people would say “immediately” is the obvious answer. But some people never cut the cord, leaving newborn and placenta attached for the first few days of life.

On this one, I’m most comfortable somewhere in between. I vote for delayed cord clamping (waiting a few minutes until the cord has stopped pulsing before clamping it), but I have no plans to practice Placentophagy (eating the placenta for its nutritional value).

For the most part, a hospital wants to get a woman in and out as soon as possible. Not necessarily because the place is run by a bunch of jerks, but because there is only enough space. Most of the time, the preference will be to clamp the umbilical cord within a few seconds of birth.

But this might not be to baby’s advantage. More and more people are asking for delayed cord clamping, realizing the many benefits that come along with it.

Delaying the cord clamping can allow up to 50% of the baby’s blood volume to flow back into her little body, while early cord clamping results in fewer red blood cells and can cause postpartum haemorrhage, retained placenta and respiratory distress for the baby. Delayed cord clamping may help prevent anaemia later in life.

The Society of Obstetricians and Gynaecologists of Canada says, “Waiting at least two minutes after the baby is born before cutting the umbilical cord may help your baby get more blood supply. This may be most helpful for premature babies. If your partner wishes to cut the cord, this can also be arranged.”

Cord Blood Donation

I was surprised to see how quick the hospital was to push for cord blood donation. It was the first thing we were told about when we went in for an appointment a few weeks pregnant.

There are two public and 10 private Health Canada-registered cord blood banks in Alberta and Quebec.

When we went to visit our hospital to check out where we would be having the baby, a big part of the presentation was spent waxing lyrical about donations. There has been a lot of controversy surrounding cord blood donations, not necessarily because of the early clamping that’s necessary to keep the blood, but because people aren’t so sure of the point of public cord blood banking.

Donating to a public bank makes a lot of sense, I think (it’s public donations that the hospital was all-for). Private donations on the other hand are mind-boggling. The chances your child will ever use his own cord blood are so slim.

And if he has certain illnesses like Leukemia (one of the most common diseases that cord-blood stem cells are used to treat) his own blood likely can’t correct the defect. Treatment would likely end up being taken from a public bank anyway.

Some people take comfort in keeping the blood in case a sibling is ill one day, but private storage of your child’s blood into teenagerdom costs thousands of dollars.

After watching the Hema-Quebec supported video at the hospital it was time for my partner and I to have a long talk about what we wanted to do. He was very touched by the video, feeling that if he had the chance to save another child’s life, he would like to take it.

Maybe I’m heartless, but my vote was for allowing our baby to keep her own blood. We sought out the advice of our doula, who never offers her opinions unless I drag them out of her.

“So,” I asked, “Hypothetically speaking, what would you do?”

She said that if she spent the entire pregnancy taking such good care of herself and the baby by making the right food choices, exercising regularly, and taking prenatal vitamins etc., why deny that baby this last bit of nutrients?

After a little more discussion we decided: Baby, you can keep your blood.

Congratulations! You’re pregnant! First thing’s first: would you consider an abortion?

If your pregnancy was planned or the surprise was a happy surprise, it may seem like a silly question. But more and more new parents are being presented with this option when they are asked if they want to have prenatal screening tests like Amniocentesis or Chorionic Villus Sampling. Based on the results of those tests, terminating the pregnancy can become something that people consider.

To be clear, this is not an argument against abortion rights: women’s sovereignty over their bodies is not in question. What I do question is making invasive procedures routine, especially when the results they produce are not definitive. And the tests also pose difficult moral questions: if the potential for abnormality is present, is that a reason to terminate a pregnancy? People obviously make their own choices for their own reasons, and I can’t stand in judgment of that. What I can tell you is why I decided that these tests were not for me.

Am I being dramatic by calling these tests invasive? Not at all. For an Amnio, done around week 15, a large needle is inserted into the amniotic sac after it passes though the woman’s abdomen and uterus. About 20 mls of fluid is extracted and tested for various disease markers and other potential abnormalities. Can this cause harm to the fetus? You bet. Can it cause a miscarriage? Yes, ma’am.

A test used mainly to screen for Down syndrome (as well as Edwards syndrome, Turner syndrome and neural tube defects like spina bifida) Amnio is standard for women over 35, as the chances of giving birth to a baby with a chromosomal abnormality greatly increase with age.

According to the The Society of Obstetricians and Gynaecologists of Canada, at the age of 27, my chances of giving birth to a baby with Down syndrome are approximately 1 in 1,111. A woman aged 42 has a 1-in-64 chance.

Author and midwife Ina May Gaskin says in her Guide to Childbirth, the reason 35 was chosen as the recommended age is  “…at this age the likelihood of having a baby with a chromosome condition is about the same or greater than the risk the test will injure the fetus or cause a miscarriage.”

Depending on whether you choose to pay for it privately ($375–$900 at one Montreal clinic) or get the free test at the hospital, you will wait between 48 hours and five weeks for results. Probably a very nerve-wrecking wait.

After a CVS, done earlier in pregnancy than Amnio (in the first trimester), you may discover that your baby could be born with Down syndrome. Either you consider this is a reason to terminate the pregnancy, or you spend a very anxious few months wondering and worrying about your baby’s health. Though maybe for some, being armed with this knowledge would be a way to mentally prepare and plan for a baby who was not born “perfect.”

At our first visit with my OBGYN, we were presented with a pamphlet for a private clinic which offers prenatal screening tests. We didn’t open the pamphlet.

I was surprised when a few friends and some family members seemed to think it was careless of us not to do go in for screening. If the test is available, why on Earth would we choose not to take it? Did we need to borrow some money?

Amnio was the first of a long list of medical interventions we would choose to bypass. Just because certain technology is available doesn’t mean we need to make use of it. I am at such a low risk for delivering a baby with a chromosomal abnormality that we felt the risks outweighed the benefits. Secondly, after a very brief discussion with my partner, we knew we would carry this baby to term and love her regardless.

We decided we would enjoy this pregnancy, assume the best, and hope she is born healthy and happy. Just like our parents did.

Sally Rhoads. Illustration by Antony Hare.

Sally Rhoads is passionate about surrogacy. The 32-year-old mother of three (ages 12, seven and 10 months) lives near Stratford, Ontario. She has been a successful surrogate once and an unsuccessful one nine times. Although her commitment to surrogacy almost killed her, she remains an advocate for a practice that is highly restricted in Canada and banned in some U.S. states.

This: When did you first become interested in surrogacy?

Rhoads: After my first child in 1999. I had really enjoyed being pregnant and found it was easy for me. I was on the internet and came across some surrogacy boards. I realized there were a lot of couples that needed help having a baby. So I figured that’s one thing I know I can do.

This: At that time it wasn’t illegal in Canada to take money for surrogacy [it now is although “altruistic surrogacy” is permitted, except in Quebec where all surrogacy is banned]. Were you also motivated by money?

Rhoads: I just thought it was something you do, like organ donations. I wasn’t financially motivated whatsoever.

This: How did your husband feel about surrogacy?

Rhoads: He didn’t like the idea very much at the beginning because he didn’t understand it. When he learned it would be a gestational surrogacy, where I would be carrying an embryo created by the intended mother’s eggs and father’s sperm, their genetics, he decided it was OK.

This: How long after your child was born did you consider surrogacy?

Rhoads: Three months.

This: How did you choose a couple to help?

Rhoads: Through the internet. From March 1999 through September, I had more than 200 emails from couples, pretty well all from the U.S. I went with Heather and Sergey from Maryland. They said they would take care of all my expenses, including travel.

This: But you were eventually paid.

Rhoads: Much later, when we started talking about a contract; they brought it up. That’s what you do, especially in the U.S. You pay a monthly fee. Maybe $2,500 in the U.S. and $1,700 or $2,000 in Canada. For me it didn’t matter. They threw out $1,100, plus expenses. That was fine with us.

This: How was the pregnancy?

Rhoads: I had the embryo transfer in a clinic in New Jersey in April 2000. When I got pregnant, I got so sick my family doctor urged me to get an abortion. The morning sickness was so bad I ended up losing my job. I also got an infection from all the needles you have to inject yourself with. It felt as if I had the flu every day for months.

This: Did you start to wonder if you had made the right decision?

Rhoads: No. Never.

This: How did the rest of the pregnancy go?

Rhoads: We learned there were twins—actually, it had started out as triplets—so the sickness then made sense. They had to induce me at 37 weeks. So the birth was in Stratford, and Heather and Sergey weren’t there for it. They were both breech babies. And there was a prolapsed cord [where the umbilical cord emerges from the uterus before the fetus]. I ended up having a C-section. I had a boy and a girl, Peter and Victoria.

This: A question I’m sure you’re often asked is whether it was difficult to give up the babies.

Rhoads: Not at all. Heather had been with me through all the testing. The day they put the embryos in me she held my hand and cried the whole time. Right from that point, you see that those aren’t your children at all. So for me there was a huge detachment there.

This: How many more times did you act as a surrogate?

Rhoads: Nine.

This: Did any succeed?

Rhoads: No.

This: Do you know why?

Rhoads: Embryo problems…at the couple’s end.

This: Why did you keep trying?

Rhoads: I never really wanted to do another surrogacy. But the couples would have the worst stories imaginable. One couple had spent $150,000 on IVF. They had lost their home, everything, trying to have a baby. They would plead with me to help them, and I always relented. One, in 2005, almost killed me. I had just had a miscarriage from another surrogacy and I told myself I was through. But a couple came from China. They had lost three babies. They said “please put our last embryos in you.” How could I say no? They put three embryos in me and I got pregnant. A couple of weeks later I was bleeding and they said it looks as if you miscarried, and that was the end of it. A week later I was feeling awful. I went to the hospital and my blood pressure was almost not there. Lo and behold, I had twin babies in my left tube. They had gotten between the tube and the ovary, and I got a big clot and it had ruptured. I lost half my blood and needed emergency surgery. They said I would have died if I hadn’t come in.

This: So that was the last surrogacy?

Rhoads: No. I had three more transfers after that.

This: When was your last try?

Rhoads: January 2008. I’m retired now. I’m divorced and my new partner wants to have more children and is worried that surrogacy might prevent that. I’ve already lost a fallopian tube because of it.

This: Have your views of surrogacy changed at all over the years?

Rhoads: In some ways. Altruistic surrogacy is very idealistic. I don’t really agree with it anymore. I strongly believe compensation should be involved unless it’s like your sister or a relative you have a connection with. I’ve seen a lot of surrogates go through this with altruistic ideas and come out of it feeling very used and hurt at the end. Most couples don’t want any connection with you after the birth. When you’re pregnant and you have your own baby, you come home with a baby. When you’re a surrogate you come home to nothing, not so much as a picture.

This: Is that what happened with Heather and Sergey?

Rhoads: No. But they got divorced a couple of years later. And I wondered, God, what I went through for these people, and they didn’t even stick together. Heather and I became close and we still talk almost every week. The twins [who are 10] know all about me. They think it was neat they were born in Canada. They added me as friends on Facebook.

This: What did you get out of surrogacy?

Rhoads: I loved it. I was always so happy to find out I was pregnant for a couple. And I always felt so cheated if I couldn’t help them. I guess, for me, it was almost addictive.

Safe, affordable midwives are in demand, but a lack of education and funding forces healthy mothers into hospitals. Creative Commons Photo by Dave Haygarth.

It wasn’t until the early 1900s that it became “normal” to have a baby under the watch of an obstetrician in a hospital. But over the last few decades, childbirth has become an increasingly complicated, medicalized affair, with more inductions, surgeries, and drugs than ever before. The advancements have saved many otherwise dangerous deliveries, but it can also traumatize healthy mothers who would otherwise be fine on their own. Cesarean sections are increasingly common, for instance: Canada’s current C-section rate is 28 percent. The World Health Organization says it should be closer to 15.

Modern hospital-based childbirth, says Tonia Occhionero, Executive Director of the Canadian Association of Midwives, could result in a “cascade of interventions.” Sometimes there’s a temptation to use every tool available, even if that’s not always the best option. An unnecessary induction of labour, for example, can produce a snowball effect, with medical interventions accumulating, quickly complicating low-risk births into higher-risk ones.

According to the Canadian Association of Midwives, 70 to 80 percent of women could deliver on their own without complications and would therefore benefit from midwife supervised delivery at home, in a special birthing centre (only in Quebec) or even at a hospital. But health-care providers have been slow on the uptake.

“There are a lot of misconceptions about what a midwife is,” says Occhionero. “But how can we expect the general public to understand when midwifery still manages to be left out of Health Canada’s literature?”

But even without promotion of midwifery, more women are rejecting the assembly-line hospital birth—demand for midwives far outruns supply. There are only 850 midwives across Canada, 435 of whom are in Ontario, the first province where the profession was regulated in 1994. Ten percent of Ontario births are attended by midwife—but 40 percent of women who request a midwife cannot get one. With only six university programs offering certification, the shortage persists.

Occhionero says that situation will continue this way until schools add midwife training, which despite its earth-mother reputation is a highly professionalized four-year baccalaureate degree.

“It’s very regulated,” says Occhionero. “Not just anybody goes around catching babies.”

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.