This sense of appreciation for the community of clinicians and researchers working with HIV is yet another driving factor that encourages those living with HIV to volunteer themselves for ongoing cure trials.
“I feel like I'm stepping into another world when I go to The Alfred,” says Natasha. “They’re always really warm and it does feel like you’re stepping into a little bubble, and there’s a real sense of community.”
While all areas of healthcare aspire to provide this kind of environment, there is nonetheless something inescapably unique about the community around HIV care.
“It is a family, it’s a great community,” says Associate Professor James McMahon, Head of Infectious Diseases Clinical Research at The Alfred, who also acts as President of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM).
“We get a huge amount from our patients, where they're so thankful for the care that they receive and we're constantly getting positive feedback,” continues A/Prof McMahon. “And you are sort of looking out for each other, which is sort of family like, isn't it?”
Indeed, both A/Prof McMahon and Dr Lau have gone to particularly unique lengths themselves in support of this sense of community with the HIV community.
“A large part of why I do the trials is because the people in the research team are just so passionate,” says Alastair. “And what really impressed me is that Jill and James both had the biopsy themselves just to see what it was like.”
“They didn't need to do that, they were the researchers, but they went and had it so they can then advise the patient what the experience is going to be like. And that impressed me so much that I think I said to Jillian that I will be part of anything that you do.”
Dr Lau laughs when asked to recall volunteering herself for this biopsy process, which involves a fine needle being inserted into a lymph node in the groin in order to retrieve tissue samples.
“So we were, in inverted commas, healthy volunteers one and two, and that was mainly to test and validate the processes with the study protocol,” Dr Lau concedes. “And the extra advantage of doing that process myself as an investigator is that I know exactly what the people who I consent for this trial will go through.”
“And I know that because I've done that myself.”
Beyond just this process alone, Dr Lau suggests that HIV cure research more generally has enriched her relationships with this community even further.
“I think HIV cure research has brought me closer to the HIV positive community and people not just living with HIV, but also those affected by HIV. So their families, those on PrEP, those who are still facing stigma and discrimination,” Dr Lau explains. “And I think just working in research in this area, particularly with cure, has brought me closer to the community.”
“And it has really emphasized to me as a researcher the importance of taking them on this journey, you know, and being on that journey with them.”
Ultimately, it becomes clear that the quest for an HIV cure remains one defined by hope, relying upon the courage and compassion of a unique community, who are themselves inspired both by the lessons of the past and a vision for the future ahead.
“I hope people know that it’s been a long journey,” says Simon. “But we’re definitely kicking its ass, for sure.”
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*At request, pseudonyms have been used for some participants to respect anonymity