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Introduction

I’ve had the privilege of being a reporter and columnist at The Globe and Mail for more than thirty years. Although I did a stint on general assignment (as all rookies must) and was preoccupied with Quebec politics during the tumultuous pre-referendum era, most of my time has been spent writing about health issues.

I don’t have a background in medicine or health. I studied business administration, with a specialty in accounting, and then journalism. I also worked for several years in the student press. I stumbled into the health field quite by accident. When I began working at the Globe as a summer intern in 1987, AIDS was just beginning to become a mainstream news story. It was a time when many people—most of them gay men—were dying in large numbers, when treatments were virtually non-existent and when discrimination was rampant. It was also a time of much anger and many protests. Militant groups like ACT-UP (AIDS Coalition to Unleash Power) not only challenged scientists and politicians to do more in response to the out-of-control epidemic, but they forced media to rethink how they write about health care. At the time, medical reporting was very deferent: scientists published research in august journals, and those findings were reported, mostly uncritically. The notion that patients would have an opinion, let alone a legitimate one, was largely unthinkable. AIDS activists demanded to be heard, and that forever changed health-care delivery—and health journalism.

Of the thousands of stories I’ve written over the years, a handful have left an indelible mark on me. One of them was the story of a man admitted to St. Michael’s Hospital in Toronto for treatment of a bacterial infection. He had not been tested for AIDS, and his condition was in no way related to a sexually transmitted disease. Yet because he was openly gay, the hospital affixed a sign above his bed—printed in bold type on bright pink cardboard, no less—reading: “Warning: risk of blood and body fluid contamination.” When I visited him, I reached out to shake his hand, and he burst into tears. That was because many physicians and nurses had refused to touch him; his meals were left at the door because staff would not enter the room. After that story ran, St. Mike’s apologized publicly and changed its policy so such discriminatory signs were banned. It went on to become one of the leading centres in the country, if not the world, for treating people with HIV-AIDS.

That encounter taught me two invaluable lessons. First, good health care requires a lot more than medicine and technology; it’s about treating people with dignity and respect, and without judgment. Second, if journalism is going to be useful and impactful, it needs to look beyond the theoretical findings of scientists and the technical abilities of physicians and focus on the patient experience in the real world. Put another way, health policy and health politics matter as much as medicine. And what distinguishes my writing—stories and columns alike—from that of other health journalists is that I focus on policy rather than medicine.

The most impactful journalism I have done in my career is coverage of the tainted-blood scandal. This came about, as many good stories do, from asking a simple question. In the 1980s, the crude shorthand we used to remember the groups at high risk for HIV-AIDS was the “4H Club”—homosexuals, Haitians, heroin users and hemophiliacs. Each of those groups was getting extensive coverage, save one—hemophiliacs. A little digging revealed that people with clotting disorders, who routinely injected blood products to control their symptoms, were at extremely high risk. So too were people who underwent surgery. The numbers were mind-boggling: testing showed that almost half of all hemophiliacs had contracted the AIDS virus along with thousands of surgery patients. But very little was written about the risks of transfusion of blood and blood products, and what was written turned out to be based largely on egregious lies. The Canadian Red Cross stated publicly and repeatedly that the risk of contracting HIV from blood was “less than one in a million,” and Health Canada, responsible for regulating the safety of drugs, went along unquestioningly. Yet before testing was implemented, after delays designed to use up stocks to save money, the risk was as high as 1 in 266. Tainted blood turned out to be the worst public-health disaster in Canadian history—and one of the worst in the world. More than twenty-four hundred hemophiliacs and transfusion recipients were infected with HIV-AIDS, and another twenty thousand or so contracted hepatitis C from blood and blood products. The revelations in The Globe and Mail led to a public inquiry, headed by Mr. Justice Horace Krever, and compensation of almost $5 billion to the victims and their families.

Yet the real tragedy of tainted blood is that the carnage was in large part preventable. Sadly, despite the enormity of the scandal, it was covered only retrospectively; it went virtually unnoticed for almost a decade after the first victims started dying. In 1994, I was invited to address a conference of the Canadian Association of Journalists on the topic, “Could the media have done a better job covering the tainted-blood tragedy?” I said this: “We journalists are guilty of the same ‘crime’ as the main players in the blood system … a failure to inform the public. Like them, we have excuses, but collectively our mistakes have cost hundreds, maybe thousands, of people their lives. There can be no excuse for that. We cannot be forgiven. But we can learn from our failures by never repeating them again.”

Over the years, I have covered many issues, from AIDS through to Zika. This book is a selection of those columns, slightly updated to ensure they are current, though when I first discussed this idea with the publisher, I said, only half-jokingly, “The good news is that in Canadian health care, nothing ever changes, so even old columns are still current.” Of course, the bad news is that in Canadian health care, nothing ever changes.

But to be fair, that isn’t really true. Health care is immeasurably better today than when I started writing about it three decades ago. But our expectations are much higher. And the system is not adapting nearly quickly enough to profound changes in demographics, technology and medicine. It’s a constant game of catch-up where we fall a little bit further behind every day. It’s like that in journalism, too, an industry and a profession that has undergone cataclysmic change in recent years. Today, the good health reporting is better than it’s ever been, but the bad health reporting is worse than it’s ever been. If nothing else, at least the good health journalists have become more introspective and self-critical.

A few years back, Gary Schwitzer, a former medical correspondent at CNN and the founder of Health News Review, a health-news watchdog newsletter, penned a list of ten troublesome trends in health news. Most people today get their health information from the media and from television in particular. This places a heavy responsibility on journalists. But in Schwitzer’s estimation, health reporting has many shortcomings, which he summarized like this:

1 Too brief to matter. The brevity of stories—they rarely exceed one minute on TV or five hundred words in print—means they lack context and significant details.

2 No full-time health journalists. Networks such as the CBC and CTV and newspapers such as The Globe and Mail have full-time beat reporters, but they are the exceptions. Most media outlets operate on the wrong-headed assumption that any reporter can jump effortlessly from covering city hall to the intricacies of cyclo-oxygenase-2 inhibitors.

3 No data to back up sensational claims. Far too many unproven—and at times frankly ridiculous—claims are aired or printed without even the most cursory examination of data.

4 Hyperbole. Each day reports of miracle drugs and treatments appear that in fact are, at best, incremental improvements.

5 Commercialism. At times, health “news” is thinly veiled promotional material.

6 Single sources. Health stories with just a single source are commonplace. They lack balance.

7 Baseless predictions from basic science. Far too many studies conducted in test tubes or on mice are touted as potential treatments in people. If only it were so simple.

8 FDA approval treated as an accomplished fact. Consumers are often left with the impression that experimental treatments and drugs in early phases of research will be on the market imminently, as if testing and regulatory approval are mere formalities.

9 Little coverage of health policy. Trivialities like cosmetic medicine (Botox and the like) get more coverage than critical issues like access to care and defining what is in the medicare “basket of services.”

10 No time for enterprise. Much health reporting is little more than regurgitation of news releases, medical journal studies and press conferences. There is little investment in in-depth or investigative journalism.

Mr. Schwitzer’s list is a good one, but it is incomplete. Here are ten more troublesome trends:

1 Story selection. Cute trumps meaningful. Quirky or pathos-laden stories, such as the separation of conjoined twins, tend to get more extensive coverage than those with broad policy implications, such as research questioning the value of breast cancer screening.

2 Black and white. Health stories tend to be black or white. Vioxx bad; Aspirin good. Trans fats bad; omega-3s good. But in science and health research a lot of greys exist; there are rarely absolutes.

3 Jingoism. The media give disproportionate attention to homegrown research, regardless of the importance or relevance of findings.

4 Short-sightedness. There is virtually no coverage of the greatest threats to health on the planet: poverty, disenfranchisement and lack of access to clean water, adequate nutrition and basic sanitation.

5 Too little training. Much research published in medical journals is of dizzying complexity and its jargon is quasi-impenetrable. Journalists need to understand statistics and technical language to decipher it, but media outlets are reluctant to invest in training.

6 Obsession with technology. A widespread assumption exists in health stories that newer is better, and that the solution to many problems is found in newer drugs and fancier equipment. Again, the reality is that addressing basic determinants of health—income, housing and the like—carries far more impact.

7 Is it really a cure? The word cure is bandied about irresponsibly. We have many ways of treating and managing disease, but virtually no cures. And “curing” a rat of cancer is a far cry from curing it in a human.

8 A sense of proportion. SARS killed forty-four people in Canada. Influenza and pneumonia kill close to five thousand annually. Health issues that affect the economy and the lives of well-to-do Westerners are blown out of proportion compared with issues that affect broad swaths of the population.

9 Lack of skepticism. One of the most important traits for journalists is a well-honed sense of doubt—about everything. When skepticism makes way for cheerleading, the result is poor health reporting.

10 Kowtowing. A lot of uncritical reporting occurs of the views of those in positions of power—physicians, professors, medical associations and pharmaceutical company executives—without questioning their self-interest. This pandering does a great disservice to health consumers.

Good health reporting should provide a straightforward, comprehensible summary of health issues. It has to be more than regurgitation. It needs to be balanced and provide context to information-hungry consumers. It has to take complex issues and make them digestible and relevant. Good health reporting should rarely be sensational, but always be skeptical. We can’t forget that the issues we write about are important to patients, their families, policy-makers, politicians, clinicians and scientists. Often, seemingly banal issues turn out to be matters of life and death.