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World AIDS day: HIV prevention strategies must evolve as ARVs change the perception of risk

Healthcare professionals need to listen to the needs of women and adapt to their circumstances if infections are to be reduced, say experts

Worry about becoming infected with HIV has slipped down young women’s “priority list” as they navigate life, family, children and education.

This is because the availability of antiretrovirals to prevent and control infection means HIV is perceived as a condition that can be controlled and concealed, HIV experts told a webinar on the eve of World Aids Day hosted by the Genital Inflammation Test (Gift) team at the University of Cape Town (UCT).

For this reason, warnings about HIV risks no longer work, they said. Instead, messaging should emphasise the rewards of remaining HIV-negative and healthcare professionals should deliver services more holistically, paying attention to women’s evolving needs and circumstances.

“Pregnancy is a risk that cannot be hidden and can cause big disruption to women’s life trajectory,” said Prof Constance Mackworth-Young from the London School of Hygiene and Tropical Medicine, who leads social science research at The Health Research Unit Zimbabwe (ThruZim).

“In contrast, despite continued stigma, HIV is often viewed as something that can be hidden and controlled through taking pills.”

Prof Nelly Mugo of the Kenya Medical Research Institute said research she conducted with Prof Elizabeth Bukusi found young women at high risk of contracting HIV often have a low perception of that risk, prioritising short-term rewards and assuming they are invulnerable.

“There’s a perception that the consequences of HIV are no longer dire,” Mugo said at the webinar, which focused on understanding women’s awareness of HIV risks and ways to stay safe that are practical for women in their daily lives.

While the HIV risk might be seen as low, about 5,000 women between the ages of 15 and 24 were infected weekly in eastern and southern Africa in 2022, said Prof Sinead Delany-Moretlwe, director of research at the Wits Reproductive Health Institute.

“And the reasons for the higher prevalence of HIV in women have to do with a lack of decision-making power about sexual relations, contraceptive use and access to health care, which really limits people’s ability to protect themselves,” she said.

Prof Sinead Delany-Moretlwe, director of research at the Wits Reproductive Health Institute

“HIV continues to be a threat to health for young women and it’s important that we continue to recognise that HIV is unfinished business.”

The webinar was the first of a series planned by the Gift team, which recently conducted clinical studies of a new device designed to screen for vaginal inflammation that puts them at risk for HIV infections, to give women key information about their own risk, and ultimately to improve women’s sexual and reproductive health.

The device, a lateral flow test similar to a pregnancy test, detects vaginal inflammation – often caused by sexually transmitted infections (STIs) and bacterial vaginosis. These conditions are typically treatable with antibiotics, but because most women don’t have symptoms, they are often undiagnosed and untreated. That’s where Gift’s developers believe the test could transform the landscape.

In the clinical studies the device has been tried by nearly 700 women in South Africa, Zimbabwe and Madagascar this year. But Gift team member and webinar facilitator Dr Ramla Tanko from UCT said diagnostic and therapeutic innovations are only part of the solution for reduced HIV risk.

“We need to understand the concerns of women and their challenges to design better intervention strategies,” she said.

Mackworth-Young said “incredible public health efforts and successes” mean HIV is often seen as a condition for which effective treatment is readily available.

“A historically singular and successful focus on HIV has meant antiretroviral therapy and increasingly pre-exposure prophylaxis (PrEP) are accessible at public health facilities,” she said.

The risk perception is therefore lower, and “this is the irony of success in terms of HIV”.

In Zimbabwe, Mackworth-Young said her team had seen an encouraging outcome when it aligned its approach to women’s own priorities, rather than simply telling them about the importance of HIV prevention. Her team at ThruZim recently completed the Chiedza  cluster-randomised trial that offered 12 communities in Zimbabwe an integrated package of sexual and reproductive health services, including HIV and STI testing and treatment, menstrual hygiene products and care, condoms and family planning.

“We found providing free menstrual hygiene products in a context where they are prohibitively expensive to buy was a real draw for young women to attend,” she said.

“It drew them in, and while they were there they would take up other sexual and reproductive health services.

“The key message is about really understanding women’s risks and priorities first, designing programmes and services that address those needs, and only then seeing how they can be integrated or aligned with public health priorities.”

Mugo said her findings in Kenya were similar.

“Young people tend to be biased towards immediate concerns. ‘I need to hustle. I haven’t made any money today. I need to fetch water.’ That’s what we heard. Rarely do young people think about being at risk.

“One young woman told us: ‘ Now people with HIV are much better than us. They’re taken care of in lots of places, they’re the most important people and the pills for treatment are available. It’s not easy for you to just die like that any more. I would not have a problem if I get infected.”

Mugo said since “risk-framing” no longer worked, “gain-framing” is more likely to succeed.

“Very often we’ve sold the fear that you will get HIV, rather than [the message that] protection from HIV will give you a better life and a future,” she said.

Delany-Moretlwe said the uptake of PrEP, with more than a million South Africans initiated on a daily pill, showed a strong appetite for this form of HIV prevention.

“But many people who express huge enthusiasm for taking an oral pill daily struggle with that practice in reality,” she said.

“About two out of five people will likely stop their PrEP within the first six months of starting. And this challenge is probably greater for younger people.”

Risk is also a factor here, she said.

“People self-perceive their risk to be low. Many people articulate concerns about [drug] side-effects particularly. Just taking a pill a day is difficult to remember. And when young people move from home to school or a new job, often that means that their access might be limited.”

Researchers had also uncovered interpersonal factors that undermined PrEP adherence.

“Often, families are suspicious. ‘Why is this person taking these pills? Do they have HIV?’ And the stigma associated with HIV is still prevalent enough that many people don’t feel comfortable to take their pills in public.

“For young women there are also concerns that come with conversations with partners who might think they are trying to protect themselves from other partners. With the high levels of gender-based violence in our region, this is a big concern and may prompt people to stop taking their pills.

“Then there are the social and structural factors which are about cost and access to healthcare. And it’s striking that many of these factors that influence PrEP continuation also influence HIV risk, particularly in young people.”

Mackworth-Young emphasised the importance of involving men in their partners’ sexual health rather than placing all the responsibility on women.

“The biggest way men can support women’s health is for men to go to health services, and that’s something we see as a challenge again and again,” she said.

“We’ve tried offering boxer shorts or haircuts at health services and that has had some impact. But I’d like to go further and meet the need that young men face, which is economic income generation. What can we do to provide something around that which links to health services and will support men to access health services?”

Delany-Moretlwe said she was encouraged by efforts to develop new ways to deliver PrEP.

“We have seen approvals for the vaginal ring and for an eight-weekly injectable PrEP. And there are a number of other studies to evaluate a monthly pill, a six-monthly injection,” she said.

“There is a real desire to increase the range of options that are available because we recognise that oral pills are not feasible for everyone. If we have that expanded choice, we really have an opportunity to change the trajectory of the HIV epidemic.”

The Genital Inflammation Test (GIFT), is a low-cost device that detects vaginal inflammation, one of the biggest drivers of HIV risk and adverse pregnancy outcomes in low and middle income countries.

It has been co-developed in South Africa by an almost exclusively female team, through collaborative approaches, spanning multiple disciplines.

The device – a lateral flow test similar to a pregnancy test – entered clinical trials in South Africa, Zimbabwe and Madagascar in mid-2023, and the next steps will be to finalise and register the test and develop a rollout plan. Learn more at www.gift.org.za, or email gift@uct.ac.za.

As the GIFT team, we know that clinical solutions, whether diagnostic or therapeutic are only part of the problem. If we want to secure health for women across Africa we need to dismantle some of the structural inequality that maintains the status quo. This can only be done through deep reflection and dialogue – which is the purpose of our webinar series, GIFT: Women up to know good.

Episode 01: From knowledge to action: Getting PrEP(ed) for life

Across the African continent and around the world, women remain highly vulnerable to HIV. Knowledge and understanding of HIV risk, however is not enough. Women face significant obstacles outside of their own control.

These obstacles can make it difficult for women to receive and utilise risk protection and care options available. They include, among others: a lack of perception about HIV risk, lack of personal agency and negative attitudes from parents and caregivers, partners who prioritise their own needs over woman’s health and wellbeing, being shamed, judged and reprimanded when asking for help, communication barriers with healthcare providers, a focus on pregnancy prevention rather than risk of HIV, and a lack of access to affordable and effective healthcare, among others.

Within this context, how can we ensure that all women are aware of risks, educated about possibilities for staying safe and enabled to maintain these strategies in the face of their daily lived experiences.

Meet the experts:

Professor Elizabeth Bukusi, KEMRI, Kenya

Professor Elizabeth Anne Bukusi: MBChB, M.Med (ObGyn), MPH, PhD, PGD (Research Ethics), MBE is a Fellow of the African Academy of Sciences(FAAS). She is a Senior Principal Clinical Research Scientist at the Kenya Medical Research Institute (KEMRI), a Research Professor at the University of Washington (Departments of Obstetrics and Gynecology and Global health), an honorary lecturer at Aga Khan University in Nairobi and Maseno University (Department of Obstetrics and Gynecology) and Volunteer Clinical faculty – Professor at the University of California San Francisco (Department of Obstetrics, Gynecology & Reproductive Sciences). Prof. Bukusi, in collaboration with Dr. Craig Cohen at UCSF, established the KEMRI Research Care and Training Program in 1995. She is also the lead faculty for the Bioethics program at the Amref International University (AMIU). In addition to substantial experience in conducting socio-behavioral and biomedical research and providing HIV care, mentoring and training health care and research personnel to enhance local and international capacity, she has a strong interest in research and clinical ethics and the development of systems and structures for regulation of research. She was the founding chairperson of the National Bioethics Society of Kenya, (BSK), a board member of AVAC, and chaired the WHO HRP Alliance (capacity building for RH research) 2016 to 2021, and is a trustee for the HIV Trust

Dr Constance Mackworth-Young, Zimbabwe, Thru Zim and London School of Hygiene and Tropical Medicine

Professor Mackworth-Young is a Medical Anthropologist, with a research focus on young people, sexual and reproductive health, and adolescent wellbeing. She is based in Zimbabwe, with The Health Research Unit Zimbabwe (THRU-ZIM), where she leads social science research. Professor Mackworth-Young founded and leads the Social Science Research Group in Zimbabwe. Methodologies she focuses on are ethnographic, participatory qualitative methods, and process evaluations. She was previously based at Zambart in Zambia, where she conducted ethnographic studies with young people living with HIV. She holds an undergraduate degree in Biological and Social Anthropology from the University of Cambridge, and an MSc in Sexual and Reproductive Health and a PhD, both from the London School of Health and Tropical Medicine.

Professor Sinead Delany-Morletwa, Wits RHI, South Africa

Sinead Delany-Moretlwe, MBBCh PhD DTM&H is and Director: Research at Wits RHI Professor of Global Health and Infectious Diseases at the University of the Witwatersrand, Johannesburg. Her research interests span the intersections between sexual and reproductive health (SRH) and infectious diseases, particularly in adolescent girls and young women (AGYW). She has been an investigator on several phase III trials of new HIV prevention technologies and led the landmark trial for cabotegravir as injectable PrEP for women. She has also led several implementation studies to optimize oral PrEP use in adolescent girls and young women (AGYW) in eastern and Southern Africa. She has conducted studies to evaluate HPV screening and vaccination approaches for populations living with HIV, as well as studies of novel treatments and vaccines for gonorrhoea. She is an advisor to the South African National Department of Health PrEP technical working group and serves on several WHO and other advisory committees, including PDVAC, the WHO HIV, Hepatitis and Sexually Transmitted Infectious Scientific and Technical Advisory Committee and co-chairs the WHO HHS pregnancy and breastfeeding therapeutics working group.

The panel will be moderated by Dr Ramla Tanko, South Africa

Dr. Ramla Tanko is a Junior Research Fellow in the Mucosal Infections Group (MIG), Division of Medical Virology, and a Fellow of the Institute of Infectious Disease and Molecular Medicine (IDM) at the University of Cape Town. She obtained her MSc and PhD degrees in Medical Virology from the same institution. Dr. Ramla’s research focuses on investigating factors such as hormonal contraceptives, vitamin D3 deficiency, vaginal inflammation, and microbiome that influence vaginal health and the risk of HIV infection. She is also passionate about discovering disease biomarkers with the potential for translation into clinical tools to improve human health. One aspect of her research involves evaluating the performance of point-of-care tests (GIFT: Genital InFlammation Test) for detecting asymptomatic sexually transmitted infections and bacterial vaginosis. The goal is to improve women’s reproductive health outcomes in Africa and other regions where syndromic management is implemented.

We were proud to host this panel of experts as they reflected on learnings and explored possibilities for how we can ensure that women everywhere have access to the information, care and support to live safe and healthy lives.