Adding Life To Years by Tackling HIV and Depression

CrossCurrents

“Stigma.” Paul Lewand says the word carefully, and it is obvious from his voice the effect stigma has had on his life. Lewand, chair of the Vancouver-based British Columbia Persons with AIDS Society, lives with HIV, but it is a mental illness – depression – that he cites as the most debilitating facet of his health. “The HIV would have been very manageable; it was depression that made my HIV so unmanageable. The first few years were fine because I was in denial and didn’t give HIV a thought.”

Among people living with HIV or AIDS, both newly diagnosed and long-term survivors, the stigma of HIV and the stigma of depression can exacerbate the effects of both illnesses. While reports vary, rates of depression among individuals with HIV or AIDS have been found to range between 40 and 60 per cent. Yet studies have also found that depressed, HIV+ individuals often do not receive mental health care.

Depression can affect HIV+ individuals in different ways than those who are not infected. When Lewand’s partner of six years died, Lewand experienced his first depression, which lasted about five years. He didn’t want to do anything, including – or especially – taking his HIV medication. Not only can depression affect adherence to HIV treatment; in some cases it can lead to treatment failure. Depression is also a factor leading to alcohol and other substance abuse. It can affect interpersonal relationships and make it difficult for people living with HIV– who already face the stigma of disease – to maintain employment or stable housing. It can also directly affect physical health in ways not entirely understood, and it has been linked with an increase in the speed of HIV progression, as well as a faster drop in T-cell counts.

Depression can also become a barrier to seeking help. For Lewand, coming to terms with his disease took many years. “Disclosing is the biggest challenge because you can’t get the help you need at the beginning if you don’t admit there’s a problem,” says Lewand. When asked what he believes would make this process easier, he is quick to answer: “More psychiatric help for newly diagnosed people is desperately needed.” At the very least, he says, individuals newly diagnosed with HIV should be given a psychiatric assessment, “and an opportunity to know that help exists if you need it.”

Difficulty contacting agencies and front-line workers, he adds, makes dealing with HIV and depression even more challenging. For Lewand in the early days, it was a struggle to maintain contact with the different agencies that provided the services he needed to stay physically and mentally healthy.

But there are signs that this disconnect between AIDS service organizations and mental health agencies is finally being bridged. Across the country, networks of service providers are beginning to collaborate, using a model that has slowly emerged over the last decade, and which is quietly revolutionizing how HIV and mental illness are approached.

This model, which has found recent expression in the Ontario AIDS Network’s Adding Life to Years project, has as its mandate the bridging of the mental health and HIV sectors. For co-founders Rick Kennedy, director of the Ontario AIDS Network (OAN), and Sean Rourke, director of the Ontario HIV Treatment Network (OHTN), the project is bringing these not-so-different worlds together to ensure that people like Lewand get help when and where they need it.

“We know that people living with HIV who are depressed don’t live as long or as well,” says Rourke, who is also a scientist with the Centre for Research on Inner City Health (CRICH) at St. Michael’s Hospital in Toronto. “The situation now is that mental health issues, depression in particular, are not picked up or addressed well on the front lines.”However, Rourke is quick to point out that this is not for lack of desire or skill on the part of community-based AIDS organizations. “These agencies do such a great job of creating an environment for people who are at the margins, and they’re great at addressing a lot of the vulnerabilities that come with HIV and depression,” says Rourke. “We saw this project as an opportunity to build more capacity and expertise on the front lines. Through these partnerships we’re helping agencies feel more comfortable with identifying mental health issues and helping people link to better treatment.”

Kennedy, who is HIV+, agrees. “With the advent of HIV medication, all of a sudden people are thinking, ‘Your problems are over; all you have to do is take these pills.’ But it’s not just about an infection that affects your physical well-being; it also affects your emotional and spiritual health.”

“It’s easy to look at HIV as the principle ingredient,” adds Rourke, “but life is very complex with HIV.What’s exciting is that the solutions aren’t just going to be found in the HIV sector. Our project is about bridging sectors. We’re bringing in the OAN’s expertise with care and support, the Canadian Mental Health Association on the mental health level and what the OHTN and CRICH know on the population health and clinical sides, and bridging that knowledge with our community- level partners.”

That bridging takes the forms of partnerships and outreach, initiated by the OAN, that involve AIDS organizations and mental health agencies across Canada. The ultimate goal is a simple one: to foster basic connections between front-line organizations that are dealing with HIV individuals and issues such as shame, discrimination, workplace barriers and living with the challenges of stigma and mental illness. This simple act of building individual and organizational contacts and sharing the terms and definitions that each sector uses can make accessing services for people living with HIV and mental illness much easier.

The model is so intuitive that it has emerged independently through the work of a number of HIV and mental health organizations. Scott Bowler is a social worker who works in HIV psychiatry at Mt. Sinai Hospital in Toronto. Since 1999, he has been a member of the Coalition on HIV and Mental Health, which, like the Adding Life to Years Project, has been trying to build sustainable relationships between AIDS organizations and mental health agencies. But where Adding Life to Years looks to build bridges between organizations in order to foster communication, the coalition has turned these partnerships into group therapy projects for HIV+ individuals with specific needs, like those with depression.

“Not everyone who has HIV has the same experience, and through the group process, we build a norm of mutual respect and tolerance for difference, along with a non-judgmental stance,” says Bowler.

The motivation for the project came from the fact that most groups being offered for people with HIV in a community setting were based on a peer-support model, says Bowler. “Or, if it was a hospital-based group, there were probably more hoops to jump through, like having a psychiatric assessment. And those of us who work in hospitals know that not everyone wants to come into a hospital, especially its psychiatry department. So we wanted to provide a service in a setting where we might get more people.”

While group members are able to share their experiences living with HIV and mental illness, the groups also provide an opportunity for agencies and front-line workers in the HIV and mental illness fields to build relationships that make it easier for clients to access services. “For the people providing the groups, it reinforces the fact that there’s a lot more similarity than differences in how we provide care,” says Bowler. For Paul Lewand, projects that bridge the gap between HIV and depression services are a step in the right direction. “AIDS organizations have the capacity to do things like create support groups and do critical case management, but not so much psychological counselling,” says Lewand. “They can put things in place for people, but if those people aren’t in the right place mentally, everything can be forgotten. Hooking up with an agency was the single most important thing that helped me through my depression.”

For more information about Adding Life to Years, visit www.ontarioAIDSnetwork.on.ca, or contact Rick Kennedy at rkennedy@ontarioAIDSnetwork.on.ca.

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