Anita Makkenchery, MD, MPH, and Brandy Farrar, PhD, discuss the potential for community health workers to become a regular part of the health care system in a post-COVID-19 world.
This feature is the first in a 6-part series on individuals and international organizations working to bring local and global awareness to the ongoing HIV/AIDS epidemic, which is marking its 40th anniversary this year.
The Centre for Sexual Health and HIV/AIDS Research Zimbabwe (CeSHHAR), founded in 2012 and headquartered in Harare, Zimbabwe, conducts evidence-based research related to HIV/AIDS, its prevention, and policy making, as well as provides and implements sexual and reproductive health education and interventions in several key research streams: sex workers, masculinity, and children and adolescents.
The American Journal of Managed Care® (AJMC®) spoke recently with Frances Cowan, MD, MSc, MRCP, MBBS, executive director of CeSHHAR and professor of global health at the Liverpool School of Tropical Medicine, about CeSHHAR’s history, its programs, and continuing to make inroads against this 4-decades-old pandemic.
This interview has been edited slightly for clarity.
AJMC®: Tell us about CeSHHAR and the work you do.
Cowan: CeSHHAR brought together a number of research projects that a group of us were working on, plus the sex work program, Sisters with a Voice, that had started in 2009. The center broadly conducts implementation research related to HIV/AIDS and sexual and reproductive health. We work with key populations, mainly sex workers, but also we have our masculinity stream, the children and adolescents stream, and then a sexual and reproductive health/HIV prevention stream. For example, we were the Zimbabwe research partner on the Unitaid-funded HIV Self-Testing Africa, or STAR, Initiative, which was a $78 million investment over 5 years to shape and stimulate the market for HIV self-tests. It started in 2015 and ran until 2020. CeSHHAR has been instrumental in doing implementation research to support introduction, model and delivery measurement, and implementation of self-testing in Zimbabwe, and across the region, as part of that initiative.
Since 2012, we’ve also been working with University of California, Berkeley; the Liverpool School of Tropical Medicine; and the Ministry of Health to evaluate the National Prevention of Mother-to-Child Transmission, or PMTCT, Program here, and that’s been with funding from the Children’s Investment Fund Foundation and the National Institute of Allergy and Infectious Diseases in the United States.
We have a large portfolio of research related to sex workers. And we have this large program that we set up initially as a demonstration project for National AIDS Council in 2009, which has now grown to be one of the few nationally scaled programs in Africa. The Sisters program has acted as a kind of research implementation platform. So the scale-up of the program has been very driven by the research that we’ve been able to do along the way. We’ve been demonstrating through research gaps in service provision, access, and use to leverage resources to strengthen the program over time.
In terms of children and adolescent work, 2 years ago, we completed the Zvandiri trial, which is evaluating the Zvandiri program. Zvandiri is Shona [a Bantu language spoken in Zimbabwe] for “As I Am.” The Zvandiri program is run by AFRICAID and is a differentiated service delivery model for children, adolescents, and young people living with HIV. We were evaluating it specifically in adolescents. They’re the age group that has the highest morbidity and mortality because of difficulties that adolescents have with adhering to long-term medication. And we were able to demonstrate in our cluster randomized trial that this intervention really does help young people adhere to their drugs better and has [had] an impact on rates of virological suppression. The trials results have been taken up into guidelines at the World Health Organization [WHO], regionally and nationally. The Zvandiri program is now operating in 8 countries around Africa. We work with Zvandiri as their research partners.
We were also very involved in both national and regional scale-up of circumcision, helping to develop models of implementation, assessing the effectiveness of different devices, looking at effectiveness of different demand creation strategies for voluntary male medical circumcision, both for neonates—which was a policy-driven research at the time, but has since fallen off the policy agenda—and also in adolescents and adults more broadly.
We run a large body of implementation research. An important piece of what we do is research capacity strengthening. CeSHHAR is a local Zimbabwean organization, all Zimbabwean researchers and program implementers. CeSHHAR has PhD students linked to both universities in Africa and Europe and the UK. I’m the only non-Zimbabwean in the organization.
Trials were reported in 2006 and 2007 showing that voluntary male medical circumcision reduced risk of acquisition of [HIV] in men by about 60% to 70%. It was surprising—all the trials came up with exactly the same point estimate, in totally different parts of Africa. And that led to WHO recommending scale-up of voluntary male medical circumcision in countries with low rates of circumcision but high prevalence and incidence of HIV; 15 countries around Sub-Saharan Africa, mainly east and southern Africa.
Zimbabwe has been a very avid implementer, although like all countries they haven’t entirely hit their targets. Zimbabwe is one of the countries with the lowest rates of circumcision traditionally, in this part of the world, so there was a big gap to fill.
AJMC®: Why is the rate so low?
Cowan: Circumcision is not done traditionally here for tribal reasons or it’s just not part of the culture. Prior to this initiative, about 7% to 10% of men were circumcised for medical reasons. Zimbabwe is dominated by 2 large tribes—the Shona and Ndebele—but there are some much smaller tribes in the south of the country that do traditional circumcision. But numerically and proportionately, they were a relatively small fraction of the men in the country.
AJMC®: Historically, studies have shown that access to HIV and AIDS treatment and care is often denied to sex workers due to the high levels of discrimination and stigma they face. The services they are denied include HIV testing, pre-exposure prophylaxis (PrEP), antiretroviral testing (ART), family planning, sexually transmitted infection (STI) testing, etc. How do you facilitate access to these services for those who most need them but are denied them or might not even be aware they’re provided?
Cowan: I think there’s a gap in terms of access. Sometimes it’s because people genuinely face discrimination at facilities. Sometimes it’s because they fear they will, because they stigmatize themselves. And sometimes it’s because they have legitimate concerns; for example, about their immigration status, about the illegality of what they do, etc. So we’ve been very lucky. We’ve worked hand-in-hand with the Ministry of Health and the National AIDS Council since the start of the program, and also very much with the sex work community.
The program includes a large number of sex work peer educators who work with the program, and over time we have been able to promote more and more sex workers to work within the program—to not just work in the community, with their peers, but actually be members of program staff. It takes time to change attitudes and beliefs, but I think sex workers are now widely incorporated in a lot of bodies, in the Ministry of Health [and] the technical working groups. They definitely have a voice as stakeholders in the whole health and engagement process—so that’s a good thing—and I think also have been able to mobilize themselves to a degree such that they are able to advocate for their own health care and rights, through the media and through community health platforms.
CeSHHAR has always worked in partnership with sex workers. The community activities that we do are not just to mobilize people for health services, but also genuinely to try and get at what they need and feel that they want. So we run community mobilization and empowerment programs at different levels, from informal teaching in the community to setting up self-help groups where women and men work together to address issues of importance to them.
And then, at the other end of the spectrum, we work with a few sex worker community-based organization [CBOs] to capacitate them so that they’re in a position to start applying for funding, managing their own funds, and managing their own programs. And our hope is that we work ourselves out of a job. In many parts of Asia, sex work programs are run by sex workers, and at the moment, it’s not that that couldn’t happen, but the CBO network is not sufficiently developed for them, for example, to be able to accept and manage large amounts of funding and the programming that would go with that. We’re working with them to build that organizational capacity so that that comes in time.
In terms of improving engagement with all services, it’s about providing trusted services reliably, and services that are of good quality, and supporting people in the community to access those services. And then providing the services they need and want. So making sure that people understand why it’s important to get tested, why it’s important to use condoms and contraception, that they can have [STIs] asymptomatically. It’s about getting the information out so that there becomes a demand for services. I think we’ve done that successfully over the years.
AJMC®: A recent study showed suboptimal viral load testing in Zimbabwe, despite adoption of routine viral load testing only a few years ago, and adolescents were shown to be especially adversely affected by this. What can be done to reverse those trends, not only in them, but in other age groups as well?
Cowan: I think viral load testing first got into guidelines in Zimbabwe around 2014. And although the aim was always to be able to provide viral load testing to everyone, there weren’t sufficient viral load tests available initially, so it was done on a targeted basis for those who needed it most. Inevitably, I think it got used much more in the tertiary referral hospitals and central clinics rather than across the country more widely. And that was partly because of supplies, and it was partly because although training had been done, if you’re not using a test all the time, it’s hard to build it into your routine practice.
But as the importance of viral load testing has become better understood, it’s been seen as an essential part of epidemic control and has been scaled up. There are more tests available, and the systems to ensure that viral load tests are done and results are returned in a timely fashion have been strengthened, ensuring that those tests are done and results are given to the patient and acted upon. All of those systems—there’s multiple layers to them—are being tightened.
In Zimbabwe, there are a lot of sites supported by PEPFAR [the United States President’s Emergency Plan for AIDS Relief], and they’ve had more supported HIV systems in place. They’ve been able to do that because they have more resources than the other clinics. But I think it’s fair to say that across Zimbabwe, access to virological testing is greatly improved. I wouldn’t say the coverage is complete, but it’s much better than it has been previously.
And I think for adolescents, the issue is that they have always been a difficult age group to engage in care. And it’s not just viral load testing; it’s also treatment adherence, it’s engagement with clinics—for several reasons. As children, they’re under the control of their parents or guardians, and as adults, they develop the autonomy to take responsibility for themselves. And there’s this period in the middle where they’re trying out different approaches. In an impoverished country like Zimbabwe, where many adolescents with HIV are themselves orphaned, the problems they face are multiple. It’s not just being HIV positive, it’s potentially being orphaned, often in very poor and unsupported households; often stigmatized by the family, although I think with the household members that they’re living with, that matters less as time goes on.
All of those factors conspire against them taking their medicines, getting to clinics regularly, and getting viral load testing done. The Zvandiri program is a peer-led program. It’s led by adolescents living with HIV who support their peers to take up and remain engaged in care. And it is transformative. Often, children who learn they’re HIV positive, their families are ashamed, nobody talks about it, and they live in isolation. And when they start engaging with other people in the same situation as themselves, it changes everything.
AJMC®: It was announced last year that PEPFAR, CeSHHAR, the Ministry of Health and Childcare, and the National AIDS Council would partner for “Closing the Gaps: Accelerating and Sustaining HIV Prevention and Care for Sex Workers.” There’s also been a $1.8 billion investment over the past 15 years that has led to an 80% drop in annual HIV-related deaths in Zimbabwe. How can Closing the Gaps build on that success, and where does the program now stand?
Cowan: The program is doing really well. As you near epidemic control, it gets harder to engage the few people who haven’t yet been engaged. As the epidemic contracts in the general population, the people who are at very high risk of both acquiring HIV themselves and transmitting it to other people become increasingly important to reach. Mathematical models, for example, have estimated that between 40% and 80% of all new infections in Zimbabwe, in 2030, might be attributable to either direct or indirect transmission as a result of commercial sex. Each sex worker has multiple partners, those multiple partners have multiple partners, they have wives, they have children, etc. And so the sex workers themselves are very vulnerable, their partners are high-risk transmitters. Working with sex workers is not important in its own right (they bear the highest burden of HIV in Africa), but you can also have a much greater impact on epidemic control overall than you can by working with other groups of adults, particularly at this stage in the epidemic.
Unfortunately, for Africa, HIV programs really focused on the general population for many years—and it’s not that it shouldn’t have focused on them. But for the whole of the 2000s, sex work programs were underfunded and/or closed down in Africa because they were thought no longer important. But of course, sex workers bear the greatest burden of HIV of any population in Africa. In Zimbabwe, about 60% of female sex workers are HIV-positive, and they get infected at a rate 10 to 20 times that of other women in the population. So they themselves need protection and care. By doing that, it’s a win-win, because by protecting them you also protect everyone else.
It’s really fantastic that Closing the Gaps has come on board. We’ve been advocating for years and years to build the program, and I think this year with funding from PEPFAR and The Global Fund to Fight AIDS, Tuberculosis, and Malaria, we’re getting to the levels of funding [with which] we really could aim to cover everyone and start really virtually eliminating transmissions associated with commercial sex transactions.
I think it’s really important, and because we’re building on a strong trusted platform, sex workers are really excited to engage in PrEP. They’re bringing forward sex workers who haven’t been engaged in the program to try and get them into care. That is really critical that that happens.
AJMC®: Do you tailor your approach to the sex workers differently if they’re male, female, or transgender?
Cowan: I think the services that each needs is different and they have different health concerns. But essentially, the approach is the same. It needs to be very much led by the sex workers themselves, it needs to prioritize their needs. We work with a lot of peer educators. For male sex workers, we have male sex worker peer educators; for transgender sex workers, we have transgender sex workers. Those are run by CBOs we support, not just by us. And we link those groups either to our clinical services or to Ministry of Health Services, where staff have been trained to be specifically sensitive to their needs.
The general approach is the same: you provide trusted caring services that are of good quality and you work with the community to build the platform, but the actual clinical services or approaches you use might differ slightly in different settings.
AJMC®: A recent study showed that the uptake of self-testing dropped precipitously when the price point went from $0.00 to $0.50. To what can you attribute these results?
Cowan: This study was done in the general population in both urban and rural settings. We found that uptake of self-testing was very dependent on the price of the test. So tests that were offered for free were taken up much more commonly than those that had a price attached to them. We also found that self-tests were taking up much more in rural communities than they were in urban settings, and that’s probably because the options for accessing testing are so much more limited in rural areas. So self-tests were about twice as likely to get taken up in rural than in urban settings.
To put it in to context: teachers in Zimbabwe are earning $30 to $50 a month at the moment. So a test that costs $2 is beyond most people’s reach. You’re only going to spend $2 if you are really motivated to test and if it’s going to cost you $2 on the bus to go to somewhere free to get a test. But if you don’t have the money, you might not bother to do it. The opportunity costs related to testing are the transport, the time you have to take off work, the waiting time at the clinic, and how scared you are getting results. So self-testing is very attractive because it overcomes a lot of those issues. But if you have to pay for it, when you can get HIV testing at a clinic for nothing, then even if people would like to self-test, that can be a barrier.
That study was done anticipating that that was likely to be the result. But it was done because there is always a push to make services sustainable and to try and get poorer countries to take on the cost of providing services themselves. But I think it showed very clearly that if you make people pay for the tests, they won’t use them.
AJMC®: Tell us about the Sisters with a Voice partner programs that provide services outside of Zimbabwe, in Botswana, Mozambique, South Africa, and Zambia.
Cowan: The relevant ministries or implementing partners in those countries are providing the services. What we’ve been funded to do—USAID funded us [and] I don’t think there’s that many programs like it in this part of the world—is to set up a cross-border program to try and help keep female sex workers in care when they travel.
We’ve already been talking about how important it is to keep people in care and to help them maintain their drugs and to keep their viral load suppressed. One of the things that makes that difficult for sex workers is they’re very mobile. For example, a sex worker might get picked up by somebody at a truck stop in Zimbabwe—they often travel with their passports—and she might go with the truck driver to Zambia and then pick up another truck to come back. And if she hasn’t got enough drug with her and she’s got no control over how long she’s away and she can’t access [services] in Zambia, then she might interrupt her treatment. We’ve tried to set up a network of providers so that sex workers from Zimbabwe or sex workers from Botswana can get linked into services in the other countries. It’s not that we provide those services in the other countries, we just facilitate the linkage. This is a fairly new program, and it’s working well, but we’re really establishing the best methods [and trying to] get a feel for how best to make it work.
AJMC®: What do you want the world to know about CeSHHAR?