Thursday, December 1st, 2016
By: Adam Graham
Programs and Development,
Silence equals death. It’s a prophetic and foreboding statement that was often used by activists in the early days of HIV/AIDS because of the unforgivable silence that followed this disease from isolated outbreaks all the way to the status of a global epidemic.
I grew up in a small town in Northern Ontario and the first time I heard about anyone living – or dying – of AIDS was through the hushed whispers of neighbours who couldn’t find the language to talk about a local man who came back home to live his last days with his family. At the risk of projecting my own thoughts and feelings, I can’t imagine that he had all the supports he might have needed, not to mention suffering the indignity of his community turning its back on him.
In North America and Europe, the first victims of this horrific and still-incurable disease were primarily gay men, sex workers, and people who used injecting drugs. Those silenced whispers in my small Northern Ontario town were not terribly surprising given that even the top leadership of many countries stayed silent for so long and caused countless more deaths because of it. But in addition to the lives cut short, millions of people were otherwise affected by HIV: grandmothers in Africa forced to care for grandchildren orphaned by dead parents; compassionate lovers and friends who cared for the dying until the end; patients and advocates who lived through the panic, trauma and stigmatizing attitudes that resulted from inaction on this global pandemic.
There is no getting around it, the early days of the AIDS crisis were full of pain. But there were also valuable lessons that laid the groundwork for the world to have arrived at where we are today. Health activists demanded that politicians pay attention to a disease that was disproportionately affecting socially marginalized populations. Along with activists, clinicians came to the fore, getting involved in a global health justice movement for the first time. In settings of extreme poverty where countries lacked even the most basic health care the situation remained extremely dire for many years. I worked in Lilongwe, Malawi 12 years ago on a reproductive and child health project and I remember driving through the notorious “Coffin Road” on my way to our project sites. There were so many deaths at that time that the competition amongst coffin sellers was fast and fierce and they had an entire road to sell their products.
At Partners In Health, we’ve never chosen to be silent. PIH has worked on the front lines of this disease since the first reported cases of AIDS in Haiti in the late 1980s. Partners In Health brought some of the first antiretroviral treatment and prevention programs to the country while advocating for innovations in treatment protocol to make sure that medication first reached those who needed it most. Our clinicians and social workers ensured that patients were provided with food and other community supports, which set the stage for a significantly better chance of recovery. People that were once weeks from death started to recover mere days after beginning the new drug cocktail and subsequently made a full rebound back to a state of good health. This turnaround was often termed the “Lazarus effect”, referring to the way that people were literally brought back from the brink of death.
The world has made some breathtaking advances in relation to HIV/AIDS in the last several decades. Many more people are accessing treatment, and deaths because of AIDS have been cut in half. Prevention and awareness campaigns have become more tailored to the specific populations that are most affected by HIV, and our prevention toolbox has expanded mostly recently with the introduction of pre-exposure prophylaxis (PrEP), a daily pill that can prevent people from getting HIV.
But these gains are still overshadowed by the fact that only half the number of people who need treatment are actually getting it and new HIV infections continue to occur. Like most diseases, HIV is a product of our social environment, and stigmatizing attitudes toward people living with HIV as well as other marginalized groups continues to drive new HIV infections all over the world.
There is optimism though. Backed by numbers, scientists, community health activists, politicians, and clinicians, we now have global goals that quantify how and when we can arrive at the day when there are no new HIV infections, where everyone has access to treatment, and people enjoy the necessary social protections to live free from stigma and discrimination. There is a lot less silence and a lot more noise.
The suffocating silence that local man might have felt when people in his community turned their back on him is one of the driving forces behind my own work in HIV/AIDS. On this World AIDS Day in 2016, I wonder – what is yours?
Senior Manager, Programs and Development
Partners In Health Canada