Networking & Advocacy To Raise The Profile Of Men In The HIV Response
Morna Cornell (Researcher, UCT)
Editorial Note: In this piece, reseacher, Morna Cornell reflects on the challenges facing men who are living with HIV/AIDS. The piece highlights gender differences in mortality on ART and proposes ideas, processes and ways forward to address challenges that surround men's health and HIV/AIDS.
My involvement in the iALARM and BRIDGES projects builds on a longstanding concern and advocacy around the marginalisation of men, and African heterosexual men in particular, in the response to HIV. My own background is in activism for the rights of people living with HIV, including access to treatment. More recently, I studied public health, so I have a strong interest in human rights and a critical eye for good quality public health evidence.
In 2002, I co-authored a book on the social, cultural and historical aspects of HIV/AIDS, based on papers from the 2001 AIDS in Context conference. After reading 90 diverse papers, I concluded that the strongest theme running throughout was the issue of sex and power: what it means to be a man or woman in South Africa, and how these meanings impact on people’s actions and ability to make choices.
Gender and Mortality
My interest in the issue was revived when I wrote my Master’s thesis, exploring sex differences in mortality among patients on antiretroviral therapy (ART) in a Cape Town township. I found that men had higher mortality than women over one year on ART but that this fact had been ignored in the main HIV policy framework at the time:
‘The NSP [National Strategic Plan] also fails to address other needs of men in the PHC services. The special needs of women and children are prioritised for treatment, care and support. There is, however, no mention of the special needs of men, other than those of men who have sex with men. In fact, there is almost no mention of men in the entire NSP. As Jordaan (2006/7) argues, ‘ignoring half of the population and in effect making the other half solely responsible for HIV prevention cannot be a durable strategy’.
In my research, I regularly encountered explanations blaming men for their own poorer health outcomes. Over and over, I read that men’s poorer health-seeking behaviour and toxic masculinity prevented them from seeking health care. While doing my Master’s, I wrote to experts in the field of gender (as 'gender' and 'sex' are used interchangeably in much of the literature, and as sex only refers to biological differences, I have used 'gender' to cover both aspects) and HIV, trying to understand the issue better. I received little response but was referred to a limited literature. In some cases, the findings of a single study with small numbers in a specific context were generalised to apply to all men. Some studies were more anecdote- than evidence-based, and there was little attempt to understand or address this gender inequity in services.
At the time, however, in line with prevailing wisdom, I concluded that men’s high mortality was largely due to presenting with more advanced HIV disease than women, and argued that if we could measure and adjust accurately for stage of disease, men and women would have similar mortality risks on ART.
I then revisited the issue of gender differences in mortality on ART during my PhD research on the South African ART programme. Using a large collaborative dataset with good quality data and methods, and linkage to the National Population Register, I explored whether there was evidence to support the common explanations for men’s increased mortality that I had come across in the literature, that compared with women: 1) men were older and sicker when they sought treatment; 2) men were more likely to be non-adherent to ART and therefore have unsuppressed viral loads (and therefore higher mortality); and 3) they were more likely to be lost to follow-up (and therefore higher mortality).
We found some evidence to support the first explanation: the initial crude mortality risk was a hazard ratio (HR) of 1.46 (ie, compared with women, men had a 46% higher risk of dying over three years on ART). But if men and women had started ART at the same age and stage of disease, this gender disparity in mortality would have been reduced to an adjusted HR of 1.31, a reduction of 15%, supporting calls to start more men on ART earlier. We found no evidence to support the other explanations: in our study, there was no difference in viral suppression among patients with viral loads; and although men were more likely than women to be lost to follow-up (LTF), there was no gender difference in mortality after LTF.
So I was left with the big question – WHY do men have higher mortality than women in ART programmes? We found the answer only when a colleague generated a hypothetical cohort of HIV-negative individuals who were age- and sex-matched to the patients in my analysis. This allowed us to compare mortality in HIV-positive and HIV-negative individuals. To our amazement, not only was there a gender difference in mortality between HIV-negative men and women, it was substantially larger than in our study among individuals on ART. This suggested that the background mortality risk for men, independent of HIV, was far higher than for women – an issue that had never been mentioned in the literature on gender and mortality on ART.
In fact, individuals who are stable on treatment are far more likely to die of unrelated causes: for South African men, these causes are mainly the exceptionally high rates of interpersonal violence and road traffic accidents. This study was a wake-up call that convinced me that a) the national HIV programme should urgently focus on getting more men on ART earlier; b) mortality in ART programmes may be unrelated to HIV or ART, especially with longer duration on treatment, and we need to report and understand background mortality rates when we look at mortality in ART programmes; and c) it’s time to start understanding why men’s mortality rates are so high in general, raising the broader issue of men’s health.
So How Do We Change The Discourse?
So how do we take these insights and change the discourse on men and health?
In the iALARM project, we have approached this from local and global levels by:
- providing a community forum for the two-way exchange of health information through the iALARM Task Team;
- building local capacity to do high-quality research;
- developing a network of individuals and organisations to share emerging research and resources;
- building the knowledge base on men and HIV; and
- undertaking advocacy to raise the profile of men’s health.
At the community level, the iALARM project aimed to increase men’s linkage to HIV care in the Klipfontein health sub-district of Cape Town. A collaboration between the Division of Social and Behavioural Sciences (DSBS), community organisations and the local health facilities, we used health information to improve services and support men through the HIV cascade. Monthly meetings provided a platform to share information, present and discuss research, plan a range of community events, and improve communication between all parties. The community-based Movement for Change & Social Justice (MCSJ) emerged from iALARM meetings, as did smaller local groups like the Street Transformation Committee, and the Men’s Forum of MCSJ. During the COVID-19 pandemic, MCSJ and other community organisations are playing an active and important role in providing masks and hand sanitiser and undertaking community education and referrals.
We are building capacity for research through iALARM (MPH and PhD students) and, more recently, through the BRIDGES Programme, where we mentor emerging young (largely Black South African) researchers to undertake rigorous research on issues related to men and health. Networking takes place within the monthly iALARM meetings, the larger community meetings, and within a burgeoning network of researchers and implementers. Notably, we have facilitated collaborations across studies exploring innovative ways of increasing men’s linkage into testing and ART initiation. Researchers working on similar issues have shared key documents, questionnaires and other key documents in an attempt to avoid duplication and learn from each other’s experiences. In a field noted for its siloed approach to research and intervention, this is an exciting development.
We are also developing the knowledge base by initiating and collaborating on quantitative and qualitative papers in peer-reviewed scientific journals. We have collated an extensive database of our own and others’ papers that challenge outdated and inaccurate stereotypes about men and health. And we have facilitated and co-authored numerous papers in the first Journal of the International AIDS Society (JIAS) special issue on ‘Men and HIV’ as well as in many other peer-reviewed journals.
Finally, advocacy at all levels helps to raise the profile of men’s health. iALARM meetings have provided a forum for community advocacy challenging community attitudes that stereotype men. Provincial/national advocacy has had an impact on guidelines and practices. Our researcher network reviews and provides combined comments on key national and global documents and participates in processes related to men and health. In 2020, this included the South African National Integrated Men’s Health Strategy, the UNAIDS Male Engagement Framework for Action, the UNAIDS Resource Clearinghouse and the (currently inactive) WHO Working Group on enhancing uptake of HIV care among men.
Global advocacy can also challenge the gendered nature of international health institutions and donors, which has a massive trickle-down effect through to the local level. Our network planned and facilitated the first IAS Satellite Session on Men and HIV in Mexico, 2019, and is playing a similar role in the follow-up session at IAS 2021, which will cover programme implementation over the past two years. The network is represented on the current Lancet Commission on Gender & Global Health, which has the potential to impact on global thinking, funding and practices. Most recently, we co-authored an Invited Comment in The Lancet highlighting the role of advocacy in ensuring access to ART in South Africa, and pointing out that heterosexual men remain the largest gap in HIV services across sub-Saharan Africa.
And In Conclusion...
Discussions about gender and HIV can quickly become acrimonious and polarised, with an underlying concern that any focus on men’s health distracts attention and funding away from the needs of women. Clearly, focusing on men should never threaten the important gains that have been made in women’s health, but there are two powerful arguments why men must be fully integrated into the HIV response: firstly, all people living with HIV have the right to health for their own sake; and second, this is the only way to break the cycle of HIV transmission.
Author Biography
Since 2007 she has directed IeDEA-SA (the International Epidemiology Databases to Evaluate AIDS Southern Africa), a highly productive regional scientific collaboration. Her PhD comprised epidemiologic analyses of longitudinal cohort data from IeDEA-SA, and she has published extensively. Her research work now focuses on (heterosexual) men as a population whose need is both underserved and under-acknowledged.
Morna has been a co-investigator on iALARM since 2015, providing epidemiological expertise. She leads networking and advocacy initiatives to increase the body of research on men and HIV care and to get men’s health issues onto the agendas of national programmes, international donors and health agencies. Morna is passionate about seeing more high-quality research produced, presented and published by African researchers. To this end, she acts as a mentor for early career students at UCT and in Zimbabwe.
Email: morna.cornell@gmail.com