The issue of paternalism – agencies who think or assume they are working in the best interests of their clients and make decisions for them – is in the news this week
A word about us: PositiveLite.com has always been a bit of an “alt-left” voice when it comes to HIV. We don’t rely for our continued existence on government funders so that gives us a bit more freedom to report on what we – and often others - are feeling.
So what’s the mood?
Big Picture? The mood is of optimism, a feeling that we’re almost there. If you haven’t been to an HIV conference that has an “Ending the Epidemic “ theme and a spirit of optimism hanging in the air, take my word for it.
But something else is going on in some quarters too. The mood as we approach World AIDS Day there is one of disappointment, of unrealized potential. Most epi data we see from our own country speaks to Canada lagging behind. “We have the tools, let’s use them” is a too often head cry for action from some of our best people.
CATIE’s Laurie Edmiston, a respected voice in HIV advocacy circles, is sounding increasingly exasperated. “Unless we do something drastically different in our approach to HIV testing and treatment in the next three years”, says Edmiston “Canada will not meet the global targets set by the Joint United Nations Program on HIV/AIDS to end the AIDS epidemic by 2030. As we enter what should be the final decade of the global AIDS epidemic, it’s time for Canada’s leaders and policy makers to get serious, step up and do what can be done now.”
I like it that people are addressing national performance indicators quite squarely. And I like particularly that I feel on the same page as CATIE and others who echo their message. We stand with CATIE. We too are concerned.
This week illustrated another confluence of opinion, this time on the issue of paternalism..
First we published an interview with vindicated Swiss statement author Pietro Vernazza, who in 2008 took a beating for his statement that people who are virally suppressed don’t transmit HIV to their sexual partners. People at the time said he shouldn’t be saying that. It was dangerous, they said. People couldn’t handle that information responsibly. He termed that world view, and the paternalism behind it, as unethical.
"...it begins with us. Because paternalism only exists if we let it."
A few days later on PositiveLite.com came CATIE’s World AIDS Day piece, "Clients can handle the Truth”. If you haven’t read it, do so now. It’s a strongly argued statement whose theme overlapped that of the Vernazza piece. “Whether we are talking about U=U, PrEP or HIV self-testing” says CATIE “we must provide all the information and options to our clients and trust them to make the best decisions for their own health . . . This paternalism has re-emerged time and time again over the course of the HIV epidemic.”
That paternalism has consequences. It can mean, for example, that not all people living with HIV are being advised that undetectable = untransmittable. That doesn’t seem right.
How do we address that? I think it begins with us. Because paternalism only exists if we let it.
We need to acknowledge we are a diverse group. Some are vulnerable, some less so. Some do the work, some can’t. Some are part of the dialogue, some aren’t. But one thing is, I believe, key; people living with HIV in Canada should be part of the prevention dialogue. And unless you work for an AIDS Service Organization you are likely not.
“Nothing about us without us” is a term that is sometimes used to illustrate what GIPA - the Greater Involvement of People with HIV/AIDS - really means. If that principle is upheld in the context of discussing services and supports for people living with HIV it is virtually absent from prevention discussions. Why? We people living with HIV have somehow bought in to the notion that prevention and testing issues are about HIV-negative people, not us. That argument doesn’t really wash, though, in an environment where so many don’t know their status – about 20% of people with HIV, according to the available data in Canada. Those people are our peers.
Bottom line, though, is that paternalism represents a power imbalance which isn’t healthy. The position of people living with HIV in the response to HIV needs to be elevated. That’s not an alt-left position; that should be our reality.