Toward a quality of lives

The challenge societal stigmas pose for HIV treatment

The 18th International AIDS Conference in Vienna last summer marked a critical moment in the global fight against the pandemic. Coinciding with the United Nations deadline to achieve universal access to HIV care, early and effective treatment was touted as a functional way to slow and even stop the spread of HIV and AIDS given the current difficulty in developing efficient vaccination.

A strategy known as “Seek and Treat,” pioneered at the British Columbia Centre for Excellence in HIV/AIDS, aims to seek out individuals with a high risk of becoming HIV-positive, and begins aggressive and early use of anti-retroviral treatment, as opposed to the earlier method of only treating individuals once they display symptoms of AIDS. This was facilitated by the development of new anti-retroviral drugs in the last five years that act on several parts of the virus and on different phases in its growth cycle, preventing patients from forming resistances – as occurred with the older drugs.

With early anti-retroviral treatment, not only is the quality of life of the patient improved, but his or her viral load is dramatically reduced. Notably, this means that the chance of infecting others is also lessened.  For every ten-fold reduction in the viral load of a population, an analysis of trends in BC found that the number of new HIV cases declined by 14 per cent.

For treatment to actively prevent the spread of HIV, however, those who are infected must know their status and have access to early treatment.  In Canada, it is estimated that a quarter of people living with HIV have not been tested, and only about half of those who tested are receiving treatment, according to the Globe and Mail.  While “Seek and Treat” aims to reduce this number by targeting high-risk populations through aggressive testing campaigns, the focus is slowly shifting to promoting testing in the general population, rather than just those deemed high risk.

This change in focus is due to recognition that the stigma surrounding HIV/AIDS limits treatment. Mona Loutfy, head of the Women and HIV research program at Women’s College Research Institute at the University of Toronto, has focused her research on issues of stigma and the treatment of HIV in women. “Stigma is one of the most important issues we face in all aspects of HIV care and prevention,” she explained.

Loutfy explained that stigma exists in two forms: symbolic stigma, the fear that people will associate one’s condition with the old stereotypes of HIV as a result of reckless sexual practices or drug use, and internalized stigma, when one begins to believe and internalize these stereotypes. The experience of either stigma can lead one to avoid getting tested. “If people don’t get tested, they end up getting care later in the progression of the disease,” said Loutfy.

The World Health Organization’s guidelines advise that treatment should begin when CD4 counts – the measure of HIV’s progress in destroying immune system cells – dip below 350 parts/microlitre. Normal levels are 600-1200, with treatment ideally beginning at 500. Despite this Loutfy has found that many Canadians are not receiving treatment until their counts are below 200.  At this level, the virus is already considered to have progressed to AIDS, and treatment success rates are much lower.

The problem, as Loutfy sees it, has not only to do with stereotypes in the general public, but also with problems within the medical system.  “HIV-patients are very likely to receive stigma in their treatment, particularly in clinics outside the major downtown centres.”

For example, “many clinics will treat Hepatitis patients but will refuse to treat HIV-positive patients, or quarantine them if they do, even though the risks are the same,” Loutfy said. A 2010 paper by Loutfy exploring the perception of stigma in HIV-positive women found a correlation between reports of experiencing high levels of stigma with negative encounters with a health care professional.  There is a worry that many HIV-positive patients could be driven to avoid the regular monitoring needed to ensure successful treatment.

Stigma becomes even more  entrenched when it comes to issues of family planning.  “When properly treated,” Loutfy explained, “the chances of HIV transmission from a mother to her child [prior to and after childbirth], or from one sexual partner to another, has been reduced to well below one per cent.”  However, “there are only five fertility clinics in Canada – four in Ontario, one in Alberta – that offer full fertility services to women infected with HIV. The majority of Canadians with HIV have no access to fertility services.”

Royal Orr, co-founder of Highlands Hope of Tanzania, a McGill-affiliated umbrella group that supports the work of nurses in HIV clinics in one of the country’s most effected regions, has also worked with this issue.

“I’ve been surprised when speaking to Canadian audiences by how negatively they react when they hear we are helping people with HIV to safely have babies,” Orr said.  “At the base of this reaction is the presumption that if you have HIV, you’re toxic and you’re expected to swear off being a sexual and reproductive being.”

Orr worked extensively in the early years of AIDS in Tanzania, combating the stigma preventing people from getting tested.  “Those were the years of ACT UP,” a reference to the direct action AIDS-advocacy group founded in the U.S. in the late 1980s.  “There was a lot of anger and we believed change could only happen if we stood up against the institutions that were failing to deliver proper services.”

But now, as institutions have begun to respond and HIV has become more manageable, he sees that the strategies for fighting stigma are changing. “What we see now is a slow, patient, nose to the grind approach of tireless, fearless advocates within the system.”

The problem seems to be one of education.  “People don’t know that sex and reproduction can be safe if you have HIV and properly treat it,” explained Orr.  He mentioned that it is an especially tricky pronouncement to make for the medical profession, because of the worry of leading to more risky behaviour.

At this, he recalled that on his first experience meeting an HIV-positive family in Tanzania planning to have children, he was initially taken aback. “But then, I thought,” he says enthusiastically, “Of course! Why shouldn’t these people have a family if they want?”