Dr. Paul Caulford has had a busy and unusual year. Since November 2016, he’s seen an unprecedented volume of patients and treated a peculiarly high number of frostbite cases. Many of these visitors have travelled on foot from the United States, escaping the Trump administration’s anti-immigration agenda. As the co-founder of the Canadian Centre for Refugee and Immigrant Healthcare (CCRIHC), Caulford and his small team of volunteers are often the first people asylum seekers turn to when they arrive in southern Ontario.

Caulford, along with Jennifer D’Andrade, founded the clinic in 1999. While they intended to help undocumented migrants safely access health care (many avoid it for fear of being detained or deported), another objective was to fill the health care gap for sponsored refugees.

Government-assisted refugees and other refugee claimants in Canada access health care through the Interim Federal Health Program (IFH). “The problem is that a lot of places like walk-in clinics and medical offices won’t take IFH,” Caulford explains, because doctors aren’t required to sign on to the program. In many cases, refugees can only access health care through expensive emergency room visits.

“When we found out about this in 1999, we were shocked,” says Caulford. “We found thousands of people living and working in our community, going side by side with us to the parks with their children, but as soon as they get to the door for their own health care, it’s shut for them.”

The CCRIHC provides daytime and evening health care assistance to its many patients. The clinic had more than 3,000 patient visits last year—a number that continues to grow as Canada’s refugee health system remains stagnant yet increasingly in demand.

“It’s been very hard to get government-assisted funding for the clinic,” Caulford says. “We have a little bit of a grant that we use for some lab tests and X-rays but it runs out very early. There’s no money for rent, supplies, security, telephones, computers— what it takes to run an office.” All 30 volunteer doctors pool money together to help pay for the clinic from their own pockets.

“Canada is a compassionate nation with a humanitarian soul, and I’m proud of our country, and proud to be doing this,” says Caulford, who hopes the government will enforce a health care program that offers all refugees—documented or not—coverage for urgent circumstances. “But Canada has lived and profited from this dirty little secret. To have people working here, paying taxes here, but not giving them health care in return is shameful.”

Illustration by Matt Daley.

On February 9, 2016, at 3:45 p.m., Gail Benshabat sent a text to her 27-year-old daughter, Lisa, asking if she wanted to catch an early movie. Benshabat was wrapping up her workday at a quiet special needs school in the north end of Toronto, about a 30-minute drive from the third-floor apartment where she lived with her daughter.

Lisa never texted back.

“I knew something was wrong,” Benshabat recalls. She returned home and rushed up a flight of stairs with an immediacy only a mother can know, calling out Lisa’s name. With no response, she put her bag down and rounded the corner of her kitchen into her daughter’s bedroom down the end of the hallway. Lisa was hanging lifeless from the ceiling fan in her room.

Lisa left three letters for her loved ones: one to Benshabat, one to her older sister, and one to her extended family and friends. “Mom,” she wrote on the first of five pages, “I want you to know that you did everything you could to help me and more…. I couldn’t have gotten this far in life without your endless love and support. At this point you can tell that I lost hope that I would ever get better.”

Lisa suffered from interstitial cystitis (IC), a little-known medical condition characterized by chronic pelvic pain and a heavy pressure in the bladder and pelvic region, often associated with urinary frequency and urgency. It manifests in sharp, shooting pain, pressure, or spasms in the bladder, pelvic region, and lower back. It has been likened to carrying a bowling ball with knives in it.

IC currently has no known cause or treatment. It is also tremendously difficult to diagnose because its symptoms mimic other conditions. It’s not unusual for a diagnosis to take up to 10 years.

The pain of the illness—a pain that has been classified by some doctors as being worse than bladder cancer—was wreaking havoc on Lisa’s life. She felt she had frequency to urinate more than the average person. But doctors said there was little they could do. Even after her death, the message was repeated. On the night of Lisa’s funeral, Benshabat woke up at 3 a.m. and started writing emails and letters to the doctors who cared for her daughter. Many replied offering their sympathies; yet, one psychiatrist responded with his condolences but still suggested that Lisa’s pain was all in her head.

This is a common theme for many female chronic pain sufferers: their symptoms are dismissed as psychosomatic despite studies and tests confirming the opposite. According to a report in the Journal of Law, Medicine and Ethics in 2001, “women who seek help are less likely than men to be taken seriously when they report pain and are less likely to have their pain adequately treated,” the researchers conclude. These findings have been repeated in medical journals in several years since.

It’s not uncommon for women with marginalized illnesses like IC to feel hopeless, even suicidal. It’s why chronic pain patients—often women—attempt suicide four times more than the general population, and why suicidal ideation is three to four times higher in IC sufferers. Even in a field that has been criticized as sexist for decades, doctors continue to perpetuate stigma against women—and for chronic pain sufferers like Lisa, that can often be the difference between life and death.

***

There were few years in Lisa’s young adulthood that weren’t plagued by constant pain. She found some relief in 2001 when, after Benshabat took to the internet to conduct personal research on IC, she found a urologist in Toronto who would prescribe the pain medication Pyridium. The pills relieved the bulk of Lisa’s symptoms for a couple months when she was 12 and again when she was 24, but she still experienced intermittent pain, spasms, and urinary urgency. Unsure when the symptoms would hit, she slept in until noon most days hoping to avoid a longer day of pain.

Many doctors dismissed Lisa. After waiting for months for an appointment with a Toronto IC specialist, she was told the pain was nerve related and there was nothing to be done. Another specialist in St. Catharines, Ont. offered no hope.

Then, a female doctor at Women’s College Hospital gave her some hope, conducting her own voiding test in her office. “It is not in your head, Lisa,” the doctor confirmed. Finally, someone set the record straight. For the first time ever, a doctor confirmed what Benshabat and Lisa knew all along: her pain was real.

Desperate, Benshabat and Lisa turned to a doctor at Toronto Western Hospital to insert a sacral neuromodulator, a surgically implanted device that sends out mild electrical pulses to the nerves in the lower back. The device helps people with urinary function and with chronic pain. But it doesn’t help everyone.

By her 24th birthday, Lisa had seen the inside of more than 10 specialists’ offices across North America—and no one could stop her ongoing physical agony

“It took us some time to persuade [the urologist] to try out the sacral neuromodulator,” Benshabat says. Eventually, he agreed. But after two weeks, Lisa noticed that there was no change to her symptoms and asked that it be removed. Postsurgery, as Lisa was wheeled into the recovery room, tears streamed down her face from the pain she was experiencing. The doctor turned to her. “I don’t know what else I can do for you,” he said and promptly left the room. There was a look of horror and outrage on the attending nurse’s face. “She went to bat for us,” Benshabat says.

When Lisa and her mother left the hospital that day, Benshabat “filed that bad experience away at the back of my mind. Our hopes were shattered,” she says. “I wanted to file a complaint to the hospital but at this juncture I needed all the strength to keep Lisa’s hopes up.”

Benshabat and her daughter did not stop searching for relief. In 2014, Lisa visited pain clinics, received more medication. She had MRIs and CAT scans. She was tested for EhlersDanlos, a connective tissue disorder, but a geneticist ruled it out. She saw physiotherapists, naturopaths, acupuncturists, and an osteopath.

By her 24th birthday, Lisa had seen the inside of more than 10 specialists’ offices across North America—and no one could stop her ongoing physical agony.

There were still options. Benshabat encouraged Lisa to keep trying. There was a doctor in Kitchener, Ont., who offered up bladder instillations, a cocktail of medicines that are put into the bladder directly. The same doctor’s research assistant encouraged Lisa to take part in their clinical trial for a new IC medication. Lisa declined: she wanted immediate relief, not a trial. The research assistant was disappointed. “You know some people with IC take their lives,” she told Benshabat.

Benshabat kept searching. She found a highly recommended physiotherapist in Kitchener with remarkable results in relaxing pelvic floor muscles. Later, she came across an IC specialist in Michigan, a three-hour drive away, but a date mix-up made Lisa miss the appointment. It wasn’t rescheduled.

“We didn’t want to overdo it,” Benshabat says. “So many doctors were all repeating the same story: It’s a disease that is not well understood and that they don’t know enough about.”

Fifteen years after her first experience with pelvic and bladder pain, with no answers on the horizon for how to live a normal, pain-free life, Lisa gave up.

***

Lisa’s experience is not singular, and gender biases remain glaringly common in North American physicians’ offices, the ER, and medical research—regardless of the ample studies highlighting the problem. While an estimated one-tenth of Canadians under 44 experience chronic pain, a disproportionate number of sufferers are female.

Yet, according to “Relieving Pain in America,” a 2011 report published by the Institute of Medicine on the public health impact of chronic pain, women’s reports of pain were more likely to be dismissed. Joe Fassler’s eye-opening essay for The Atlantic in 2015 details this through the story of his wife Rachel and her dismissive experience in a Brooklyn, New York emergency room department. Nurses frequently told her to stop crying from the pain—a pain that was the result of a twisted fallopian tube that her attending physician misdiagnosed as kidney stones because he didn’t check the tests before finishing his shift.

Rachel’s experience recalls the “Yentl Syndrome,” a term coined in a 1991 academic paper by Bernadine Healy, noting that women do not receive aggressive or proactive treatment in their initial encounters with the health care system until they “prove that they are as sick as male patients.” The study was named after the 1983 film Yentl starring Barbra Streisand, whose character dresses up as a boy in order to receive the education she desires. Healy found that men were often expedited and taken more seriously than women when treating cardiovascular complaints.

Later, in 2014, Katarina Hamberg, a researcher out of Sweden’s Umea University, found “women are less likely than men to receive more advanced diagnostic and therapeutic interventions” for coronary artery disease, Parkinson’s disease, irritable bowel syndrome, neck pain, knee joint arthritis, and tuberculosis—all chronic illnesses—even when they presented with the same severity of symptoms as their male counterparts.

For Abigail, an artist from Kingston, Ont., suffering with endometriosis, it’s a familiar story. Abigail, whose name has been changed to protect her identity, suffered debilitating menstrual cramps since the age of 14. Her first doctor dismissed her suggestion it was endometriosis, another chronic and hard-to-diagnose disease that manifests in severe menstrual cramps and gut-wrenching pain; she was instead prescribed Midol, a medication billed to help menstrual pain, and Ibuprofen. The pills made a small difference.

But in 1999, Abigail collapsed from excruciating menstrual cramps during her first day on a new job in Toronto. The emergency room doctor she saw said it was a common ailment. “This is part of being a woman,” he said. He prescribed Ponstan, a muscle relaxant, which Abigail would use religiously for the next decade.

It would take almost two decades before Abigail was diagnosed with endometriosis. Like Lisa, she found herself turned away by doctors who dismissed her pain, or pumped her full of pills and antibiotics that failed to relieve her. In 2005, she was hopeful when a gynecologist in Montreal discovered a dermoid cyst on her ovary and scheduled surgery to remove it; but during the procedure, the doctor was unable to do so without also removing her ovary. Without Abigail’s consent, the cyst was left alone.

Her pain never subsided. Following the surgery, she emailed the gynecologist a succinct list of detailed dates and pain recurrence since the surgery, along with a rational fear it could be symptoms of ovarian cancer. He wrote back: “Blah, blah, blah. Contact the receptionist for an appointment.” Abigail descended into a depression. “I thought I was going mad because no doctor could explain what was causing the pain,” she says.

Abigail and Lisa aren’t alone. Writer Olivia Goldhill from New York had to self-diagnose endometriosis after her primary care doctor “waved his hands dismissively” when she asked if her pelvic pain could be connected to her menstrual cycle. And Sarah Barmak, in her 2016 book Closer: Notes from the Orgasmic Frontier of Female Sexuality, cites a similar story from Vanessa, a woman who went from having multiple orgasms to experiencing intense pain during sex. She was told by doctors, who were unable to successfully treat Vanessa, to “just not have sex” as a means to cure troubling uterine pain. Barmak doubts a man would be offered similar advice.

***

Are doctors dismissing pain in women because they themselves cannot find an answer?

A majority of those suffering from chronic pain are women, and often, their disorders are not easily understood by the medical establishment. This is due in part to a lack of funding and research available.

An editorial in the British Journal of Sports Medicine explains menstruating women are “being excluded from clinical trials, and that when they are included, they’re tested early in their menstrual cycles, when their hormone levels are closest to men’s.” And according to Julie Palmer, a researcher at Boston University, it’s still easier to recruit male test patients for some disorders, leaving women behind.

Meanwhile, some studies lay the blame on women and their inability to communicate efficiently with doctors. The University of California, Davis’s Michael Moskowitz says men are better able to voice their pain symptoms in ways doctors can respond to. Sweden’s Hamberg echoes this, noting that “men describe their symptoms in a straightforward and demanding way, while women often… give vague symptom descriptions and hesitate to accept potentially dangerous measures such as surgery.”

And even though female chronic pain patients outnumber male chronic pain patients, there are more male pain physicians than female pain physicians in North America. Because women experience pain more intensely, more frequently, and respond differently to pain medication and pain management therapies, male doctors may have trouble understanding their symptoms.

Abigail, like many, is still at odds with how little her doctors could assist her. When asked how the doctors came to diagnose her in 2013, she said there was “always a lack of information”—all of her doctors would consult a massive tome of pharmacology to diagnose the symptoms, but none of the medications they prescribed helped completely. Despite the numerous conferences, newsletters, and medical journals available to keep doctors in the loop surrounding diagnoses and available treatments, there is no guarantee specialists are always up-to-date.

The Royal College of Physicians and Surgeons of Canada says a subspecialty of Pain Medicine was approved in October 2010 and new national standards were implemented effective July 2013—meaning more research and treatment for chronic pain sufferers could be imminent. Senior communications specialist Melissa Nisbett, however, can’t confirm that there is a central database or online forum for doctors to consult for puzzling and seemingly incurable symptoms.

Desperate for answers, many, like Benshabat, turn to the internet, joining forums for support and searching for more understanding specialists abroad. Others simply linger in pain. As Carolyn Reilly, a reproductive justice advocate who suffers from endometriosis, writes in an article for Bitch magazine, something must change. “Female pain exists in a crossroad of stigma, disbelief, and misogyny. Female pain must be regarded as legitimate,” she says. “Because disbelieving and delegitimizing female pain is a form of oppression.”

***

When Lisa gave up her fight against IC, Benshabat felt responsible to keep searching for answers. More than a year since Lisa’s death, she is carrying on her daughter’s legacy by creating more awareness surrounding IC and those suffering with chronic pain, participating in talks at Canadian universities about the emotional impact of IC. She is also attending international conferences in the U.S. to share Lisa’s story with others.

“There is a moral responsibility by our medical system to turn their sights toward people who are giving up on life,” Benshabat adds. “I don’t want anyone to have to suffer like my daughter had to.”

These days, Benshabat often thinks back to the letter Lisa left for her. She is reminded of her daughter’s loss of hope, of the years in doctors’ offices that left her feeling defeated.

In the end, Benshabat’s efforts are calls for restored hope—that someday, Canadian women suffering with chronic pain, just like Lisa, will be treated with more respect and dignity by the health care providers intended to help them feel better.

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.