Beyond ‘surviving’ with HIV: living proof of why the paradigm must change

Co-authors Jeffrey Lazarus & Kelly Safreed-Harmon share a high point from a recent meeting of the HIV Outcomes initiative, which is co-chaired by Professor Lazarus.

What is the HIV Outcomes initiative and why is it needed?

The initiative is a multistakeholder European collaboration that arose from a shared commitment to bringing about a fundamental shift in how governments and societies are responding to HIV.

Why is this change to the HIV response in order? We could draw on mountains of published studies to explain. Instead, we would prefer making our point with the below photograph.

Mario Cascio (right) with one of his greatest sources of joy – his son.

That’s 65-year-old Mario Cascio of Italy with his 21-year-old son. Since 1985, Mario has been living with a triple diagnosis: HIV, hepatitis B virus and hepatitis C virus. In the mid-1990s, Mario and his HIV-negative wife approached Mario’s physician to discuss their interest in having a child. At the time they were hopeful about being able to do so safely in light of what they had learned about sperm washing.

The physician responded that having a child was a terrible idea, since Mario’s wife would simply end up raising the child alone as a widow.

Mario recalled this experience when he spoke at a recent HIV Outcomes meeting on the issue of how our collective way of thinking about HIV needs to change.

For more than a decade after HIV was identified, it was regarded as a fatal disease. Then highly active antiretroviral therapy (ART) became available in wealthy countries in the late 1990s. The resulting declines in HIV-related deaths in communities with access to the new drugs seemed almost miraculous.

Even two decades later, the reality of having so many “long-term survivors” – people who have been living with HIV for many years – still can evoke a sense of wonder in people who remember a much darker era. Maybe that’s the problem.

We are overlooking something important: to merely ‘survive’ with HIV is not an acceptable outcome!

Maybe too many of us – including physicians, researchers, public health officials and perhaps even people living with HIV – are still so dazzled by the impact of ART that we are overlooking something important: to merely ‘survive’ with HIV is not an acceptable outcome!

Yes, people who are optimally treated with ART have a good chance of enjoying a normal or near-normal lifespan. We do not seek to diminish this achievement.

But far too many people worldwide are finding that life with controlled HIV infection is filled with numerous other challenges directly or indirectly related to having this virus. And our health systems are failing them because the medical goal of reducing viremia to an undetectable level has been allowed to stand in for more people-centred goals.

What do people living with HIV need and deserve from health systems?

Greater attention to the comorbidities that overshadow many of their daily lives – cardiovascular disease, bone thinning, non-HIV-related cancers, depression and too many others to name here. Also, greater attention to common quality-of-life issues such as fatigue, insomnia and sexual dysfunction.

There is no excuse for any health service provider anywhere to express stigmatising views or to discriminate against someone who has this disease.

And for goodness sake, with all that is now known about HIV, there is no excuse for any health service provider anywhere to express stigmatising views or to discriminate against someone who has this disease.

Which brings us back to Mario.

His physician’s response to his interest in fathering a child might seem like a tale from an unenlightened former era when health care providers routinely ignored the principle that people living with HIV have the same human right to found families as everyone else, regardless of their medical prognosis.

But in fact people today continue to report HIV-related stigma and discrimination in various health settings in most countries worldwide. Overcoming this problem needs to be a central part of the new HIV agenda.

As Mario put it at the HIV Outcomes meeting, one of the greatest sources of joy in his life has arisen from a decision that his physician opposed. How glad we are that in the face of such a challenge, Mario didn’t settle for mere ‘survival’.

The HIV Outcomes: Beyond Viral Suppression initiative will be presenting policy recommendations for key stakeholders in November 2017.

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