Communicating HIV science: the past, present and future

Today, I’m a regular contributor to several HIV publications. Communicating complicated HIV science in plain language is vital for our long-term health and wellbeing. And HIV scientists too, also need to gain our interest in their work for we are the pool from which they must recruit participants for cutting-edge HIV cure and ARV treatment clinical trials.

As positive people, we live in an age when HIV science has reached new heights with antiretroviral (ARV) long-term injectables, a new weekly ARV pill successful in recent clinical trials, and the promise of a functional cure. One such ‘functional cure’ being pursued by many researchers globally, and still in clinical trials, is based on broadly neutralising antibodies (bNAbs) combined with a six month or longer ARV long-term injectable.

Some may question: ‘Aren’t the ARVs that give us an undetectable viral load, already a functional cure?’

But a functional cure could well be the first step to an actual cure. For example, the bNAbs and ARV injection combo could be every six months, then a year and then maybe after a few or more years, the body makes its own bNAbs? This science holds exciting potential; yes?

The past

Remember when protease inhibitors were discovered in 1996?  This new generation of effective HIV medications took us from the darkness to the light. But the discovery did not come easy. Many of our peers from those early days volunteered as guinea pigs, testing various combinations of trial drugs, many of which had horrendous side-effects, until scientists got the formula and dosing right.

Back in 1996, HIV science was relatively easy to understand for the community. People just needed to know that the newly discovered protease inhibitors, in combination with already available HIV treatments, meant we were no longer going to die. The virus would be controlled to undetectable levels. Nothing else mattered and it took us all a few years to come to terms with living as opposed to dying.

We still faced stigma. Still do. And many people with HIV still hide their status, living in fear of family, friends, neighbours, employers, anyone finding out.

The present

Post 1996 were the quiet years, when many of us retreated and just got on with the new life we had been gifted by HIV science. With everything so new, researchers had not yet realised the impact HIV treatments had on our long-term health such as on our cardiovascular system, bones, nervous system, and what impact the undetectable levels of virus was having in the form of low-level inflammation.

We didn’t worry too much about side-effects. Mostly we just put up with it for we were alive and that was all that mattered. But treatments improved, side effects became negligible, combination one-pill-a-day ARVs emerged, and many of us accepted this was as good as it gets.

After all, weren’t ARVs as good as a cure except for taking a daily pill? Most of us had an undetectable viral load and lived healthy, happy, and productive lives. Then in 2016 with the science supporting Undetectable equals Untransmittable (U=U), we could even have condomless sex. Life was good, except of course, for the stigma. That was still here.

It was also back in 2016, at the Burnet Institute’s World AIDS Day presentations on the HIV reservoir, that I first became intrigued by HIV science and felt driven to communicate it to my peers.

I suddenly realised all was not as good as it looked. An undetectable viral load did not mean I was in the clear.

However, most of my peers were oblivious to their dormant HIV reservoir and the implications of ongoing low-level inflammation. They did not sit through complicated HIV science presentations as I did. Studies were also emerging about the long-term impact of this inflammation, such as heart disease, a higher risk of cancer, and dementia, especially as we age. But as people with HIV, we would feel this impact much earlier, researchers advised. My peers needed to be informed. They needed to be warned.

HIV cure science was also making new discoveries at this time as researchers explored even deeper inside the reservoir where HIV had embedded itself inside the DNA of our cells. This was complicated stuff even for scientists. So, it was understandable that many of my peers were not aware that researchers had sniffed out HIV’s hiding places and what this meant in terms of finding a cure.

I could also understand the disinterest from some, especially my older peers as they’d heard it all before when the media reported breakthroughs with an overly positive spin, but were soon disappointed when nothing came of it.

The future

Today, I believe, with the advances in treatment and cure research, HIV science is on the precipice of new heights of discovery. In just the past two years the breakthroughs in HIV science for both cure and treatments has been astounding. While in previous years I often struggled to gain the interest of my peers; to get them as excited about HIV science as I am, in recent months, I’ve noticed a dramatic shift. I see this, especially with the engagements on the HIV science stories posted on social media.

It was after the IAS HIV Science conference in Brisbane in 2023, I noticed this shift. There was some very good news presented at this conference. The Reprieve study and the significant preventative benefits to our cardiovascular health with the wider use of statins for people with HIV, especially those with elevated cholesterol, was one such presentation.

Plus, there was much discussion on the latest research on what scientists called a ‘functional cure’. Had they given up on the holy grail of an actual cure? Not so, I was told. Studies using initiatives like broadly neutralising antibodies (bNAbs) was another positive step in the HIV cure direction. I look forward to results from the latest clinical trials when I report virtually on the HIV science presented at AIDS2024 in July.

So, with a growing hunger from the HIV community for updates on HIV science, where do we go from here?

We, too, can be part of the HIV science. Clinical trials have long since moved from the test tube, and Analytical Treatment Interruptions (ATIs) is the new buzz word in HIV research labs.

To accelerate the science towards an HIV cure, we as people living with HIV are vital.

Our participation in clinical trials where we take a trial drug or a placebo and stop taking our ARVs as a controlled ATI, is the only way to tell if viral control has been achieved.

Even if the trial drug (whether it is a cure, a more effective ARV treatment, for prevention, or as a vaccine) only works for some people, scientists know they are on the right track.

They can go back to the lab, tweak the formula and try again. Communicating the results of clinical trials to the community, even when trials fail, still gives us hope, because with the failures come successes. That’s how HIV science makes its discoveries.

From 1981 when HIV was discovered, it took another 15 years before a breakthrough. It is this hope that fuels the passion of HIV researchers and fuels our own growing interest and participation in HIV science. While we are not there yet, when we are together with HIV researchers, we are an unstoppable force against a virus that is fast running out of places to hide.

To find out more about HIV Cure research happening in Australia and globally visit HIV Cure.

If you live in Victoria and would like to enrol in HIV cure surveys and register your interest as a participant in HIV cure clinical trials visit the Victorian Volunteer HIV Cure Database.

Watch this recent webinar recording of HIV Cure Research in 2024.

To keep up-to-date with latest HIV science and news for women living with HIV: Positive Women Victoria Facebook.

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