Today, 1st December 2021, is World AIDS Day, and 40 years since the first AIDS diagnosis. So much has changed since then, and HIV is no longer a death sentence for those who contract it, but am I celebrating today? Honestly, for me this is a day of reflection – on the lives lost, the terrible suffering of countless people, the quiet deaths of young gay men drowning of pneumonia in stark and sterile hospital rooms where there was hardly a relative to be seen, and staff pushed food on trays on the floor through the door for fear of contagion, and politicians used religion and the moral high ground to ignore the problem and condemn a generation of people to inadequate medical care.
It’s also a time for gratitude – that we now have effective treatments, that HIV prevention through PrEP has had so much uptake, and that the joyous message of U=U (undetectable equals untransmissable) is finally getting through. Yesterday this amazing T shirt arrived in the mail from Angelina Namiba in the UK – she made it herself, raising funds for the @4Mproject, a perinatal peer mentoring project for women living with HIV. Just in time for me to wear it to work today!
As a clinician caring for people with HIV over the last few decades, I know that an HIV diagnosis now is a world away from what it meant to be diagnosed back in the 80’s or 90’s. The earliest reports of AIDS cases came in 1981 when a rare disease called Pneumocystis was reported in some gay men in Los Angeles – at first they called it Gay Related Immune Deficiency – GRID. The stigma was there from the start – it was reported as a disease of people who were seen as perverted and undesirable, and therefore of little significance to the good god-fearing public. In 1983 the virus was isolated in a laboratory in Paris by Dr Françoise Barré-Sinoussi, who eventually received the Nobel prize for her work in 2008, and HIV made the front page finally.
It was another 4 years before there was a medication that could arrest the virus and give people hope. ACT UP, the AIDS Coalition To Unleash Power, was a grassroots group formed in 1987 in New York to try and improve public understanding of the epidemic, and increase funding for research and access to the sought-after medication AZT. They soon had off-shoots across the globe. I remember taking part in a “die-in”, a popular method of peaceful resistance involving lying on the ground with chalk circles drawn around us, in an inconvenient location (in this case outside the entrance to the Courier Mail newspaper in Brisbane) wearing our ACT UP T shirts, protesting a homophobic columnist in the paper. Sadly, the hope that AZT delivered was short-lived, and those who had seemed to improve rapidly deteriorated as the virus became resistant to the medication. Over the next few years, more drugs arrived, but not a lot of hope, as many many thousands more across the world succumbed to the seemingly inevitable AIDS death. My flatmate and best friend in med school used to volunteer giving massages at the local AIDS support organization, and he would tell me how difficult it was to massage people who had virtually no remaining muscles, their bones poking through like concentration camp survivors. Those were terrible days.
Finally in the mid 90s a new class of drug, the protease inhibitors, offered a new hope, and in 1996 the concept of triple therapy became the gospel of HIV treatment. Unfortunately the mixture of drugs used to treat HIV often had terrible side effects, with metabolic complications and body shape changes, muscle wasting and fat deposition in the wrong places, and although they did save many lives, it was not without cost. HIV patients back then were often on a cocktail of dozens of different pills a day, and the treatment side effects meant that most were unable to work. Meanwhile over in Africa, medications weren’t so easy to come by, and the epidemic was in full swing.
By 2009 here in Australia we finally had the much sought after single pill to treat HIV. Even though it too had some side effects, they were minor in comparison, and it felt like the golden ticket for many who recalled the dark days of the 80s. So many of my patients had lost their friends and partners to AIDS, it was like there was a generational PTSD. To this day I have many patients who were severely traumatized by their experience at the height of the AIDS crisis. Many doctors and nurses who cared for AIDS patients were also profoundly affected.
Today we have an amazing array of choice with respect to HIV treatment, several stand-alone single pills that can be taken once daily, a 2 monthly injection, and long-acting pills, injections and implants are in the works. We also have effective prevention of mother-to-child transmission during pregnancy, and scientific evidence that people who are undetectable on treatment cannot pass on the virus to their sexual partners, the U=U paradigm. We have much to be thankful for. But there’s still so much more to do. We need access to safe effective medications in low income countries, we still need to work on HIV stigma, and we still need a cure. For now I will celebrate though, for the long-term survivors, for resilience in the face of great loss, for the effective treatments we can offer, for the future, for U=U. Thanks for reading, and taking the time to think about what the last 40 years have meant for people with HIV and their carers.