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When Stigma Kills: Fears and Prejudices Undermine Health Care

From overdoses to AIDS to Zika, stigma has made problems worse.

Crawford Kilian 20 Jan

Crawford Kilian is a contributing editor of The Tyee.

Blogging about disease outbreaks and the politics of public health for more than 10 years has taught me a great deal — not just about how people get sick, but about how healthy people respond to them.

The word “stigma” comes up a lot. It means a mark of disgrace or humiliation, something that makes other people shun you. In disease outbreaks, especially of new diseases, those who fall ill suffer instant stigma. And so, sometimes, do their caregivers.

It seems extremely stupid. Why avoid someone just when they need help, and why avoid those who do try to help? Why allow stigma to block effective measures to save some of the 914 people who died of drug overdoses in British Columbia last year, for example?

The stigma response is so universal that I suspect it’s been wired into us over hundreds of thousands of years. Only in the last century or two have we begun to understand what makes us sick and how illnesses progress and spread. Before that, it was just a matter of waiting to see what happened to sick people and whether they died or recovered — and whether other people got sick too.

If you don’t know what causes infectious diseases, but you see caregivers catching them too, you draw an obvious conclusion: getting too close to a sick person can make you sick as well. A friend or relative, someone you could always count on, is suddenly a threat. Better to stay far away and let the sick person die or recover alone.

Children, watching their parents recoil from sick people, learn quickly and pass the lesson along to their own children. And people wired to try to help the sick would tend to die. You might care for your own children, and risk death to save them, but you’d shun other sick people. (And you would likely be shunned by the rest of your tribe if you became ill.)

Stigma as public health policy

Stigma, in other words, was good public health policy when public health involved only small groups of hunter-gatherers. It was likely also good health policy toward strangers from other groups: who knew what diseases they might be carrying?

A century or two of serious medicine can’t match millennia of superstition (and evolution). We saw that when AIDS emerged in the 1980s, and people dreaded touching an AIDS victim, or even being in the same room.

Some long-established diseases like malaria or measles don’t trigger the stigma response. They’re too common, or seen as unavoidable.

But if we think that the victim has somehow asked for the disease, stigma is our automatic response. Casual sex results in AIDS? Divine wrath has been visited on the sinners! West African burial practice involves bathing and caressing the dead person? Serves them right when they catch Ebola!

Even the health care workers and burial teams trying to contain the Ebola epidemic suffered from stigma. People avoided going to West African hospitals to give birth, or be treated for routine illnesses, because they feared Ebola. The burial teams were shunned by their families and neighbours for doing a needed task.

In the case of Ebola, stigma affected even the survivors. They often suffer “post-Ebola syndrome,” with long-lasting problems like damaged eyesight and depression. Worse yet, Ebola can survive in the genitals and be passed on to sexual partners long after recovery.

Sex and stigma

Zika’s impact has also been aggravated by stigma around sex. It’s a minor disease for most people, but a small percentage of women who contract the Zika virus early in pregnancy will give birth to babies with terrible neurological damage: not just microcephaly, with tiny heads and defective brains, but blindness and convulsions. Brazilian mothers of such babies often see their partners desert them over the stigma and the prospect of a long, wretched time with a doomed child.

Worse yet, Zika is the first known mosquito-borne virus that can be sexually transmitted. If your partner comes back from Puerto Rico or Rio de Janeiro with Zika, you may catch it too. This does not bode well for many relationships, and has already hurt a Caribbean tourist trade based on dreams of sun, sand, and sex.

Fentanyl and stigma

Stigma doesn’t even need sex or contagion to do harm. This week the B.C. Coroner’s Office released a report on drug overdose deaths over the past decade.

Those deaths rose dramatically from 2014 to 2015, and then spiked in 2016. On April 14, chief medical officer Dr. Perry Kendall declared a public health emergency. To no avail. We now know 914 people died of drug overdoses in 2016, 142 of them in December alone.

If 914 British Columbians had died of Ebola or H5N1 bird flu last year, the whole world would be alarmed, and we would be a pariah province. The stigma would apply to all five million of us, and health agencies around the world would battle to rescue us.

But because overdose deaths stem from drug addiction, which is supposedly a condition addicts deliberately choose, the stigma applies only to them. The rest of us, British Columbians, Canadians, and the world health community, can shrug off a public health disaster.

And therefore we ensure more addicts will overdose and die, while first responders — firefighters and paramedics — will try to cope with the stress of trying to save them.

Early in January, Vancouver Liberal MP Dr. Hedy Fry rather bitterly said that if the overdoses were happening in Ontario, the country might respond faster and more effectively. She may be right; we took the SARS coronavirus more seriously in 2003 because it affected Toronto hospitals.

The whole health care community must patiently educate the country out of its reliance on stigma as an automatic response to a perceived health threat. What’s more, health care workers need to warn us that stigma itself is a serious danger to our health — and the only cure for it is understanding what really causes disease.  [Tyee]

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