It wasn’t exactly earth-shattering, but when American actor Charlie Sheen recently revealed he had HIV, the news made headlines around the world — and also generated plenty of chatter.
That’s probably because the disease still carries a certain stigma, unlike other episodic disabilities such as multiple sclerosis or diabetes, because it can be transmitted through sexual activity and sharing needles.
But since it was first discovered in the early 80s as the virus that causes AIDs, HIV has benefited from advances in research and medication, considerably reducing the mortality rate. And a person living with HIV today can live a full, productive life, personally and professionally.
Thirty years ago, there was no treatment for HIV, according to Alison Symington, co-director of research and policy at the Canadian HIV/AIDS Legal Network in Toronto.
“We’re now at a point, for most people, if they work with doctors and get on successful treatment, their viral load can be brought down to an undetectable level. So what that means is the amount of the virus that’s present in their blood and body fluids… will be reduced to such a low level it isn’t even picked up on a test anymore. They’ll have HIV in their system but it’s under control and that’s fabulous for many different reasons, one of which is your immune system isn’t going to decline and your health isn’t going to be affected in the same way.”
The number of people living with HIV (including AIDS) in Canada continues to rise, from an estimated 64,000 in 2008 to 71,300 in 2011 (an 11.4 per cent increase), according to 2012 numbers from the Public Health Agency of Canada.
But that’s partly because new HIV treatments have reduced the mortality rate and new infections continue at a rate greater than the number of HIV-related deaths, so the overall number of Canadians living with HIV infection will likely continue to increase in the years to come.
Medical treatment has transformed the epidemic, she said.
“Unfortunately, socially, we don’t always keep up — there’s still a lot of misinformation and fear and stigma around HIV that hasn’t really kept up with those great medical advances.”
Unfortunately, it is still a stigmatized illness and a lot of it is based on misinformation, with people thinking, for example, HIV can be transmitted through casual contact, said Symington.
“A lot of it’s rooted in moral judgments that people have because it’s a sexually transmitted illness or transmitted through injection drug use... and that leads to a lot of discrimination,” she said.
“What happens more often now, it’s not ‘I told my employer I was HIV-positive and they fired me’ — as you might have heard in the late 80s or early 90s — but more ‘News travelled around through gossip and it’s now a poisoned work environment’ stories. So while there aren’t that many physical barriers for people living with HIV in the workplace, there’s still barriers based on stigma and discrimination and misinformation.”
A lot of people who are HIV-positive face discrimination, said Gary Lacasse, executive director of the Canadian AIDS Society in Ottawa.
“It’s ignorance, really, because the less you are aware of how you can transmit (it), the more stigma exists. So what I tell employers is to ramp up the information. There are amazing AIDs service organizations or NGOs across Canada that can come into the workplace and discuss the situation with your employees, and make it a more comfortable atmosphere for the people who are living with HIV… because if you’re talking about big, national companies, there are a lot of people living with HIV in them.”
There’s no need for co-workers to fear a person with HIV, said Symington.
“While employers may need to provide some accommodation in order to allow a person to work to their full ability, they can be amazing, productive employees, so everybody needs to inform themselves a little bit if they are worried or concerned.”
HIV is a chronic illness that has periods of wellness interrupted by periods of illness and worsening symptoms, according to Wendy Porch, manager of episodic disabilities initiatives at the Canadian Working Group on HIV and Rehabilitation in Toronto.
“One of the difficulties is that it’s very difficult to predict when the episodes will happen, how long they’ll last or how severe they’ll be. They’re not unique to HIV — we know that there are increasing numbers of Canadians that are living with conditions like multiple sclerosis, lupus, diabetes… mental illnesses also fall under this kind of category of having fluctuations in terms of periods of good health and periods of illness.”
Unfortunately, if people try to work through the low periods when they haven’t asked for accommodation, they can reach a point where they are unable to stay at work and may fall out of the workforce entirely, she said.
When first diagnosed, symptoms can be like those of the flu and then develop into comorbidities like certain cancers, according to Lacasse, but if people take medication, they will have the same level of engagement in the workplace that they did before.
However, keeping up with the medications can be a challenge because they have to be taken regularly, at the same time every day, and a lot of people have side effects, said Symington.
Mental health concerns
There can also be mental health concerns, said Porch.
“Some people have described the initial diagnosis as being very traumatic, and certainly there are higher comorbidities of depression for people that are living with HIV,” she said.
“You can internalize the stigma that you see played out and that can do quite a lot of harm in a lot of ways. Stigma can of course prevent people from being tested in the first place; it can prevent them from engaging with HIV-oriented support services once they are diagnosed; and it can prevent people from asking for the accommodation they might need at work.”
A lot of people who are first diagnosed need the support of community associations and professionals who can help them adapt and be more secure with their status, said Lacasse.
“Most people who are first diagnosed self-stigmatize much more than they’re stigmatized against, so if you don’t settle that first step, you’ll have trouble facing stigmatization later on.”
Because it’s a stigmatized illness and a chronic illness, HIV can be very stressful so people really need support from friends and family; from HIV organizations and support groups; and from employment programs. Diet, exercise and alternative therapies are also important, said Symington.
“It’s kind of the whole person, not just the medical treatment, that’s important to dealing with something that’s going to be with you for the rest of your life and will affect you in different ways.”
The type of accommodation needed will depend on the individual, said Porch, but for people living with HIV, or any episodic disability, it’s about instituting flexible practices for issues such as doctor’s appointments, periods of illness or reactions to medications, said Porch.
Opportunities to shift from full-time work to part-time work, banked hours, compressed workweeks and job sharing are also good options, said Porch.
“We often encourage employers to think about having space where somebody could rest during the workday in order to combat fatigue; sometimes, having somewhere to store your medications if they have to be refrigerated; and also access to extended health benefits can be really critical for people with HIV and other episodic disabilities because they usually include drug coverage, which is a huge part of being able to be employed.”
For some people, it’s about adjusting work hours or providing more breaks, said Symington.
“Sometimes, it’s as simple as just changing someone’s working hours so that they can work at the times of day when they’re more productive, according to their medication... Sometimes, it requires a little bit more flexibility, a little bit of creativity to find the best solutions.”
However, it’s important to note there is no requirement for a person living with HIV to disclose her medical condition to her employer — aside from certain professions where there is a small risk of exposure, such as health care, said Symington.
Instead, a person can say she has a particular illness that requires accommodation, with appropriate medical documentation.
Deciding whether or not to disclose your status is a very difficult decision to make because HIV stigma still exists, said Porch. People may speculate: How did they get it? Can I get it too? Is it contagious?
For that reason, there are people living with HIV who have chosen not to request accommodation, she said.
“We know of a few situations where people have been inadvertently outed by virtue of them joining a small company, joining the health insurance plan, and suddenly the premiums have gone through the roof, and people are wondering why and they know that it’s the person that’s most recently joined and then there (is) speculation about what their condition is and they know what medications they’re taking.
“So it’s a very difficult situation for somebody to engage with,” said Porch.
“Your employer has an obligation to keep your information confidential but your co-workers don’t, so if you’re thinking about telling a co-worker, you have to remember that once the information is out there, you can’t get it back and there’s very little you can do in terms of trying to contain that.”
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