New survey results uncover differences in opinion across genders
Modern HIV medications are powerful in both managing the infection and preventing its transmission and many of its negative health effects. Still, for many researchers and community members, the ultimate goal is to find a cure.
A cure for HIV would mean no more antiretroviral medications, fewer health checkups, and less concern about early onset of chronic illness associated with living with the virus. But what would such a cure look like? There’s no single answer.
Types of Cure
Dr. Branka Vulesevic is a research associate for the Cure & Immunotherapies Think Tank at the CTN+. Together with Dr. Cecilia Costiniuk, who co-leads the Think Tank, she’s also a member of the Canadian HIV Cure Enterprise (CanCURE), a Canadian organization dedicated to developing a cure for HIV. CanCURE is one of the Network’s partner organizations and is a key conduit from basic, bench-based research that develops and tests new immunotherapies to clinical trials like those led by the CTN+.
Broadly speaking, there are two possible forms this cure could take. The first would be a ‘complete cure’, one which would completely remove the HIV virus from a person’s body. The second would be a ‘functional cure’, where viral particles remain, but they could not be transmitted, and would not have any negative impacts on the person’s health.
Current research suggests that we’re most likely to develop a functional cure. This type of cure would most likely be composed of multiple parts—one to help the immune system to identify the HIV virus, one to kill the virus, and another to manage the many downstream health issues caused by HIV.
But which of these health issues should be prioritised? HIV is a hydra of a disease, and it’s a challenge to know which of its serpent heads pose the biggest threat. “We needed to actually examine the outlook of the community towards a cure,” said Dr. Vulesevic. “How much do people who live with HIV actually know about the research being done to find a cure? What would they like to see from the research being done?”
To find out, a team of CTN+ and CanCURE researchers surveyed over 100 people living with HIV to evaluate their knowledge and priorities when it comes to a cure. They published the results in the journal Personalised Medicine, with a particular focus on analysing how these priorities differed according to gender.
“Men are still mostly concerned about wanting to have a cure that is helping them not transfer HIV to their partners,” Dr. Vulesevic explained. “Meanwhile, women want to be able to live without comorbidities that affect them earlier than other people their age.”
For these respondents, it’s not enough to simply remove or incapacitate the virus — a ‘cure’ would mean freedom from the negative impacts of HIV has on heart health, early menopause, dementia, and more.
Highlighting women’s voices
Of the 109 participants in the survey, 48.6% were women and 48.6% were men, with the remaining 4.8% being two-spirit, non-binary, agender, or other. “That balance was the main pillar of the research, the whole reason the survey was able to be conducted,” said medical student Jessica Lu. She was one of the paper’s key writers, alongside lead author Dr. Cecilia Costiniuk.
“The way a lot of current HIV clinical trials are designed seem to inherently exclude women. For example, they say we can’t accept any women of reproductive age for any health outcomes on their reproduction,” explained Lu. A central philosophy of this paper was to avoid this gender bias so common not only in HIV research, but the medical field at large.
They achieved this gender parity by working very hard in collaboration with community organizations, and having a Women’s Advisory Board on the research team to ensure the survey was designed with gender inclusivity in mind. “It’s been a long time that men living with HIV had their voices heard, while the women were left somewhere in the background,” said Dr. Vulesevic. “So, I’m proud of what we managed to accomplish.”
Women In STEM
This support for women was evidenced not just within the paper, but in the way the researchers behind it spoke about one another. “None of this could have been done without Jessica,” insisted Dr. Vulesevic. “She’s the one who took all this data and turned it into a beautifully written paper.”
The sentiment was mutual. “Branka and Dr. Costiniuk are the best mentors ever,” Lu said. “I was able to filter all the data, but I could only do it because Branka helped me and Dr. Costiniuk gave me the resources to accomplish it.”
Community, first and foremost
Now that the team has collected this important information, it’s time to develop a plan to address community priorities.
While there were places where cure priorities diverged by gender, overall, community members were very aligned on what they wanted in a cure. A top priority across demographics was ‘not having to take a pill every day’.
When asking about the values and principles that HIV researchers should uphold during researcher, the top priority was ‘Expansion of community involvement in HIV cure research activities’. Right behind it was ‘Taking into account representation of persons identifying from different ethnic groups.’
“People just want to feel like they’re represented in research,” said Lu.
“Everyone wanted more involvement of the community in designing the research from the get-go,” said Dr. Vulesevic. “I think that’s where CTN+ can be proud — we really are a leader in supporting clinical trials with community-first mindsets.”
The next step for this area of research is finding ways to ensure the desired community inclusion in HIV cure research, especially when it comes to women and racial minorities. That entails building studies that are designed to be accessible for people of many different backgrounds and walks of life. Dr. Vulesevic said, “One of my dream pilot studies is just asking women if they’d join an imaginary study. Asking them, would you participate if we do this? Or if we do that?”
Looking Forward
“Medical research is thought of as a very technical, scientific field, but I think it’s really important to remember that ultimately, we’re doing it for people,” said Lu, when asked what had inspired her to pursue medicine. “It’s a very human domain.”
“Collaboration is the most important thing,” said Dr. Vulesevic, echoing the sentiment. “Both within research organizations, and with community organizations. None of this research could happen without that.”
A cure for HIV might still be years — or even decades — away. In large part, that’s because good research takes time to do right. Together with organization like CanCURE, CTN+ strives to make sure its clinical trials are done in a way that align with the priorities and values of people living with HIV.
Lu wanted to ensure community members knew this above all else: “We see you.”
