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.

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.

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.

If Maclean’s was looking for someone to explain Canada’s teenage girls to their parents, Sax was a strange choice. He does have a PhD in psychology from 1980, but he primarily interprets and popularizes research rather than doing peer-reviewed work himself. Unfortunately, his interpretations are pretty controversial.

A blog called Language Log has criticized Sax for over-interpreting and distorting research on gender differences. This stands out to me because I know Language Log to be home to particularly smart take-downs of bad statistics. The New York Times also published a fairly critical profile of Sax a couple years ago.

So I shouldn’t be surprised to find Sax up to his usual tricks in this Q&A. Take his claims about self injury:

…if you look at the literature, you see that more than one in five girls is cutting herself and/or burning herself with matches. […] In a very well-executed study published in the Canadian Medical Association Journal two years ago, a demographically representative sample of young people 14 to 21 years of age was surveyed in Victoria, and there was an overall prevalence of roughly 16 percent. Although in the abstract there’s no mention of sex differences, if you pull up the tables you see that only eight percent of boys but 24 percent of girls were cutting or burning themselves.

In fact, that’s not exactly what the paper found. (You can read it here.) Sixteen percent of young people and 24 percent of girls had, at some time, injured themselves. But the way this statistic is repeated presents two problems. First, Sax implies that all self injury in these papers is cutting or burning, when in fact the authors also measured some kinds of drug and alcohol use, and other behaviours. This is an understandable memory lapse. But second, and more importantly, Sax’s statistics are for youth who had ever hurt themselves. When we look at how many youth had injured themselves more than three times, prevalence falls to six percent. (The paper doesn’t provide a gender breakdown for that smaller group.)

The difficulty here is Sax’s verb tense. The fact that he says “one in five girls is” and then later “24 percent of girls were” suggests an ongoing, long-term problem. As unpleasant as it is to imagine, I think we can accept that a large number of teenagers try out self harm, and that this is quite different from someone who injures repeatedly, over a long period of time. It is the latter scenario that Sax goes on to describe in titillating detail:

The girls themselves tell you, “I cut myself because it’s real, it’s not fake.” It’s not a cry for help: most girls don’t want adults knowing they’re cutting, which is why they cut in places we won’t see, like high up on the inner thigh. And they don’t want to kill themselves. There’s research which is quite astonishing to many people: when girls cut themselves, they are getting a release of endogenous opiates—they’re actually getting high.

This is a small misinterpretation, but it is important. A surprising result has unusual power in this sort of piece—it stops readers short, overturns their assumptions, and encourages them to reassess the rest of the article’s claims. And it’s especially disappointing coming from a magazine that just last year published a comprehensive package on how well teenagers are doing:

In light of these facts, [Reginald] Bibby [sociology at the University of Lethbridge] expects strong resistance to his findings from the very teen crisis apparatus he partially credits with all the good news. “The experts act almost annoyed when you suggest kids are actually looking a little better,” he says. Some of that blowback stems from genuine difference of opinion. But a lot grows out of popular wisdom coming out of the United States.

Unfortunately, with this piece Maclean’s has uncritically repeated that misleading popular wisdom. And from a cover this sensationalist, I think we have a right to expect more.

Henrietta Lacks lived only to the age of 31, and it’s the acute case of cervical cancer that killed her that also brought change to the world. During radiation treatment, doctors scraped her cancer cells for research. Those cells eventually became known as HeLa, and they are immortal. HeLa cells continue to duplicate to this day, and they’ve been used in everything from polio vaccines to gene mapping to AIDS research.

It’s a truly fascinating story from a science and medical background – how one group of cells can live more than 50 years after the woman they came from died.

But it’s the back-story that sets The Immortal Life of Henrietta Lacks, written by journalist Rebecca Skloot, apart. Lacks and her family were unaware that her cells were harvested and used in medical research, and they only recently found out about her scientific importance. Her immediate family, currently based in Baltimore, never received any compensation for her cells—despite the fact that they were taken without permission and subsequently used by wealthy research companies.

As Skloot develops the story into a profile of Lacks and her family, we get an intimate profile of Henrietta’s daughter, Deborah, as well as her sons and husband. Immortal Life reads like a murder mystery most of the time, even though we know who committed the crime.

Says her daughter Deborah:

“I always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin’ about them takin’ her cells, now we don’t get a dime.”

It’s easy to praise The Immortal Life of Henrietta Lacks: it’s engaging and well-written. But the importance of the book might be just as overlooked at Henrietta herself, who has been rarely praised as the person responsible for saving lives around the world. This book goes some way toward correcting that original injustice. The Immortal Life of Henrietta Lacks shouldn’t be placed on the bookshelves of only those interested in medical research and history—the story weaves itself through various genres, and is related to politics, race relations, gender studies and health care. Skloot proves that Lacks is: “An unsung heroine of medicine.”

In the end, medical research is about people, and it’s people like Lacks and her family we should be reading about to understand our current health policy, what it means to the average Canadian, and what our health system could become. The media is often to blame for taking science reporting and leaving it at that—cells and researchers and technical terms. But it’s who that research is helping that should be the focus.

The evidence in favour of safe-injection sites is overwhelming, but the federal government appears determined to shut Insite down.

Despite ongoing efforts by the Harper government to shut it down, Insite, the Vancouver-based supervised-injection site, is alive and thriving, with over 10,000 registered users and around 800 daily visitors. To Mark Townsend, an Insite representative, it’s a success story that needs to be replicated in other cities.

Established in 2003 as a scientific research project to help marginalized populations struggling with addiction, mental illness, and HIV/AIDS in Vancouver’s notorious Downtown Eastside, Insite operates under a constitutional exemption from federal drug laws and is the only legal supervised-injection site in North America.

Since its inception, Insite has been subject to rigorous, independent third-party research that has lead to highly positive articles in publications ranging from the New England Journal of Medicine [PDF] to The Lancet [PDF]. Results have been nearly unanimous: Insite improves health access for the highest-risk users, reduces costs to the health care system, decreases crime, and improves neighbourhoods.

For Townsend, it is a testament to the narrow-minded, ideology-driven policies of the Harper government that it is still trying to have the courts rule Insite a violation of federal criminal drug law.

The latest round of court battles started in May 2008, after the B.C. Supreme Court issued a landmark decision—that it would be a violation of the charter rights to life, liberty, and security of person for addicts not to have access to harm reduction in the form of a safe-injection site. It is this ruling that the federal government is currently appealing; there is no word yet on when a decision will be made. [UPDATE: The B.C. Court of Appeal dismissed the challenge on January 15, 2010; the government indicated it would appeal to the Supreme Court.]

Townsend is hopeful, though, that Insite will survive both its current battle in the B.C. Appeal Court and the inevitable future showdown in the federal Supreme Court. Still, in light of the government’s intransigence, Townsend insists that what is needed now is more action from Insite’s supporters: the best way to fight for the future of safe-injection sites is, where appropriate, to set up more.

“People need to stop talking, get off their asses, and actually do something,” he says with frustration, remembering how Insite immediately transformed Vancouver’s Downtown Eastside for the better.

True to her title, Dr. Henry, the director of Public Health Emergency Management at the B.C. Centre for Disease Control, errs on the side of common-sense, underplaying the book’s more interesting purpose: to criticize the developed world’s pharma-dependence.

To ground her pro-sanitation proselytizing, Henry provides a deeply researched but conversational and anecdotal history of our evolving understanding of the flu: Snow, the cartographer of cholera; Jenner, the inventor of the vaccination; Pasteur and Koch, who laid to rest the “bad air” theory; salmonella, the foodie bug; Fleming, the penicillin man, and others. But from a doctor on the front lines of the H1N1 pandemic, and who served as the senior Canadian consultant to the World Health Organization during the 2000 Ebola outbreak in Uganda, one might have expected insight gleaned from rare experience rather than a retelling of what we already know.