The struggles of those living with HIV/AIDS are spotlighted with Dec. 1 being World AIDS Day, a date that also marks the end of Regional HIV/AIDS Connection (RHAC)’s annual Red Scarf Campaign.
However, as important as initiatives such as these are, stigma remains a tremendous obstacle to climb for people living with an epidemic that is more than three decades old.
Despite that lengthy battle, the major barrier to HIV treatment continues to be stigma and discrimination. This reality is struggled against on a daily basis by the RHAC staff.
Although they tackle it is different ways, Kelly Wright, director of HIV support services; Meredith Fraser, director of education; and Emily Marcoccia, director of community relations, all see how important it is to get people talking about the disease.
Those conversations are vitally important, particularly when considering how much confusion and misinformation there continues to be around the realities of HIV and AIDS.
“Since the advent of antiretroviral medications in the early- to mid-90s there seems to be a luxury for some who have not been touched directly by HIV/AIDS,” Fraser said. “We often think about HIV/AIDS in a non-local context, we think about it globally, internationally. As a result, we don’t always tend to be aware of the impact here in London and area.”
Fraser said there remains “a lot of misconceptions” around a cure. It isn’t uncommon, she adds, for RHAC staff to encounter individuals who believe there is a cure. Certainly, because the research can be so complex and isn’t often broken down more simply for the general public, there can be confusion around various pieces of research.
So it remains essential, Fraser said, to raise awareness around the fact HIV is “a
chronic, manageable illness;” there are medications to treat the disease, but there is no cure.
Even at a medical level, Wright said, studies have showed there remains consistent evidence of people being afraid to even going to the hospital.
“You would think going to an HIV doctor, a location specific to their illness, would be welcoming, supportive and a safe place. And yet, it is not,” Wright said. “There is still very much stigma around who else is in the waiting room. Do they know about my disease? If my name is called, or if my doctor’s name is called, will that out me as having HIV? There is a real stigma even around the safe places we try to provide for people.”
The presumptions of others creates what Wright describes as “a real us versus them attitude” at times around people that have HIV and those who do not.
At the RHAC picnic earlier this year, which was held in one of the city’s community parks, Wright said there was “a very clear understanding” there wouldn’t be any large banners identifying the event — or even a bunch of big red balloons — out of the concern people would feel outed if they were seen attending such an event in the community.
“So even in our social, fun, very safe events, we take it into consideration how we ensure people’s privacy,” Wright said.
That fear is also seen among the volunteers Marcoccia works with.
While quick to acknowledge RHAC has “tremendous volunteers,” there are those who aren’t willing to be photographed or identified in any way as actually assisting the HIV community.
They are happy to volunteer, they are comfortable to do so, Marcoccia said, but the need remains to protect their wishes of anonymity.
Fraser said that reality speaks to some of the “visceral fear” of people living with HIV that they will experience discrimination and stigma. And that can contribute to social isolation, which is challenging if someone is already grappling with the complexities of their lives, which may or may not be connected to their HIV status.
Unfortunately, Fraser said, there are people who are worried about offending those living with HIV, about not knowing the facts, and depending on their experience, they could even be worried about outing themselves as being HIV positive.
The work of RHAC is to try and create dialogue, to help ensure people are equipped and supported in having conversations, to normalize them and let people know it is OK to talk.