The secret to protecting unborn babies from HIV

As part of a blog series on Social Entrepreneurs, we spoke to Frank Beadle de Palomo, President and CEO of mothers2mothers, which works to keep HIV-positive mothers alive and healthy to care for their children and promote HIV-free survival of their infants.

Your social enterprise has reached more than 1.3 million HIV-positive mothers in sub-Saharan Africa in 9 countries since it was founded in 2001. Your approach has virtually eliminated mother-to-child transmission of HIV, according to UN Global Plan guidelines. What factors made your work both successful and scalable?

Our core innovation is employing HIV-positive women to serve as “Mentor Mothers,” helping to make sure other pregnant women who have the virus do not pass it onto their unborn children. We recruit HIV-positive mothers who have avoided perinatal HIV transmission, which means that when they were pregnant, they discovered they were HIV positive, but because they faithfully took anti-retrovirals throughout their pregnancy, they managed to deliver an HIV-negative child. So these women have an innate and intimate experience how to do this. We put them through a rigorous training process, after which they become salaried healthcare workers working side by side with nurses and doctors in public health clinics.

When a pregnant woman is first diagnosed as HIV positive, one of our Mentor Mothers works with her throughout her pregnancy until the baby turns 18 months old or so. It sounds simple, but this intervention is actually quite groundbreaking. When Dr. Mitch Besser, an obstetric gynaecologist, came to South Africa in 1999, he was shocked to find that interventions which had pretty much eliminated perinatal HIV transmission in developed countries had not been implemented in Africa. HIV-positive pregnant women were not getting the education, support, and medicine they needed, and their babies were becoming infected with the HIV virus as a result.

So Mitch reached out to HIV-positive women to understand what their experience was like, and he realized how isolated and terrified they felt. Doctors have a very different status from these women, who often times don’t have much money or education, and they were usually quite cold to them, while nurses were overburdened and sometimes did not even speak the same dialect. So these women came into the clinic very excited about their pregnancy, and then they received a life-changing diagnosis. By the time they walked out, they were thinking, “My life is over.” Our Mentor Mothers have changed all that. They are there, in the clinic, at the moment of diagnosis, to say, “Look, I know where you are, because I’ve been there. This is what it was like for me, and this is what I think it will be like for you, so let’s do this journey together.” It is utterly transformative.

One thing we do differently, which is essential to our success, is that we do not engage our Mentor Mothers as volunteers because there is a certain level of professionalism required. They must learn how to become peer educators, how to deliver health education messages, how to provide psychosocial support, do data and case management, and provide access to other kinds of services. So it’s a pretty intense position. They really need to track the mothers and their infants over time, and track their medication history, to improve outcomes.

What milestones have you reached so far? How do you track your progress?

We look at three things: number of women reached, reductions in transmission rates, and cost savings. To date we have served more than 1.3 million pregnant HIV+ women across the seven countries in which we operate. In 2014, we reached nearly 500,000 pregnant women and 106,700 HIV-exposed infants. Without any intervention, the mother-to-child transmission rate is around 40%. Right now, South Africa is looking at a rate of about 2.81% per cent. The mother-to-child transmission rates are far lower among women in our programme than national averages – in Lesotho, for example, the transmission rate is 3.15% among women in our programme compared to 21.7% nationally. These numbers mean we achieved the targets set out in the UN’s Global Plan a year ahead of schedule. In other words, among the women in our programme, we have achieved what the UN calls virtual elimination. The last measure we look at is cost savings. An outcome evaluation study of our Ugandan programme, for example, showed that for every dollar we save $11.40 in future treatment costs.

How did you replicate the mothers2mothers model in new countries? What lessons did you learn in the process?

We started in Cape Town in 2001 and expanded organically until 2003, when we received a game-changing funding boost from the US President’s Emergency Plan for AIDS Relief. After that we went quickly from South Africa to six other countries – Swaziland, Lesotho, Kenya, Uganda, Malawi, and Tanzania. We didn’t have a manual of how to replicate the model country by country, we just responded to the huge need. Each time, we started by taking our senior team to the new country, finding and recruiting the management team, familiarizing that team with how we work, hiring local women, and building the whole thing brick by brick. We didn’t look for partners or affiliates. We did it ourselves as a direct service approach.

We learned a lot of lessons in the process. The first lesson is to hire locally. We don’t take a woman from Uganda and put her in Kenya. We identify women who can share the experience of what it’s like to live in that community, to deal with the cultural issues, language issues, gender issues, and all kinds of socioeconomic issues in that area. That’s part of what makes the intervention work – it’s not just a medical intervention, it’s psychosocial support in the broader sense.

The second lesson is that if you really want to be able to implement these kinds of programmes at scale, you have to get support from a national government. Even if they’re not funding you or transferring resources, you need to have that implementation support in order to make things move at the local level. We created separate MOUs (memorandums of understanding) with each government-run public health clinic we work in outlining how our programme is implemented – i.e., we’ll supervise and pay the salaries of the Mentor Mothers, but they need to ensure links with the doctors and the nurses, they need to provide access to meeting rooms for support groups, etc.

Over time we built relationships with national Ministries of Health, and having the mothers2mothers model institutionalized in the national policy framework has turned out to be critical since those policy frameworks direct the implementation at the provincial, district, and local level. We didn’t appreciate that at the beginning, though. We had more of a grassroots, community-by-community approach to building the programme.

Serving one in four pregnant, HIV-positive women in the countries in which you operate through your direct service model is, by any account, “operating at scale.” So where do you go from here? Are you focusing on just one approach or are you pursuing a combination of replication and scaling strategies?

At some point, we realized that if we continued to think about scale as “growing our organization,” it was going to be impossible for us to keep apace of direct service implementation with the level of quality we needed to sustain the intervention. So we’ve evolved our strategy. We put our training curriculum and our intellectual property out into the space as an “intervention in a box,” sharing the Mentor Mother Model with several international NGOs and implementing partners who then implemented the model in Ethiopia, Rwanda, and Botswana.

The second strategy emerged from an opportunity to partner with the Kenyan government in a different way than we had partnered with governments in the past. In 2009, the UN launched “Countdown to Zero: Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive.” Mothers2monthers was invited to participate in the global steering group for that policy process. After analysing the epidemic in their country, the Kenyan government decided to implement a national Mentor Mother programme. So they partnered with us, funded by USAID, to roll out the Kenya Mentor Mother Program. We worked with the government to create national guidelines, identify local implementers and train them, and get 300 sites up and running. We also provided a nationwide monitoring and evaluation framework.

We’re really excited about this because it allowed us to scale back our own direct services to only a handful of model sites where we innovate and provide teaching and training services to the Kenyan implementing providers. If we had embraced a direct service model to scale in Kenya, we would have needed a much larger presence at a much higher cost, obviously, whereas this model allows us to spend 90 cents of every dollar on programming.

Even in South Africa, we’re transitioning our sites and our staff to become government employees in two provinces, Mpumalanga and Limpopo. The provincial Departments of Health have been working hand in hand with us to take on our programme and to implement it with their own resources. This gives me tremendous hope for the future. This kind of leadership – to have South Africa commit its own resources, not just donor funding, and prioritize this programme in the allocation of public resources at a local level – means there’s much more buy in and sustainability over the long term.

Your organization has evolved so much since its origins. What do you know now that you wish you knew then? What advice do you have for other social entrepreneurs who might be at an inflection point and exploring how to transition beyond a direct service model?

The pace at which our organization reached scale was both exhilarating and painful. The most important advice I would give to any social entrepreneur is to ask yourself, “How do we put ourselves out of business?” Embracing the notion of an end game allowed us to take risks in order to achieve the bigger goal we want to accomplish. Up until then, the organization’s fame and evidence base was all predicated upon our own ability to implement.

Second, when you pivot from direct service to technical assistance to a tertiary implementer, it’s a completely different skill set and cost structure. Implementing directly is very different than teaching others how to implement. And when you’re the implementer, costs are spread out across a staffing structure that has a very large base of entry-level employees and a relatively small leadership level made up of Site Coordinators to District Managers on up. So our costs were very distributed and our services per woman reached were very cost-effective. To provide technical assistance to governments and other implementers, the skills sets required are also better remunerated – you need experts in quantitative evaluation and adult learning theory, trainers who are credible with government officials and NGO staff, and so on. Your cost structure starts to invert because the bottom of the base becomes narrower and the top is widening. It’s going to be harder for you to justify the cost-effectiveness of your approach, and I don’t think people really understand those implications as they make the transition.

Our third big lesson has been about engaging the donor community – public donors, private philanthropists, impact investors, whatever. Everyone gets excited about supporting the initial impact and innovation of small grassroots efforts. Very few donors want to support maintenance or the next generation of activities. If it weren’t for the leadership at USAID, and a handful of private donors such as Johnson & Johnson, Skoll Foundation, Mulago Foundation and the “Big Bang” partners, which were thinking about this like we were – that you need government adoption to sustain the level of resources required to continue treatment and prevention – then the transition of ownership to the government would not have happened. Our experience with most funders is that they want to be able to point to the impact of something they’ve funded directly.  We have not found a lot of folks who are excited to talk about how their funding can be leveraged to achieve something beyond what you could do by yourself.

Last piece of advice: you have to be willing to explode your sacred cows. Address the elephant in the room. For us to really be out of our jobs one day, we had to look at the impact of our intervention and think about the intervention more broadly. As the HIV epidemic changed, and drug treatments improved so significantly, we took a hard look at our core competence – which we realized is our ability to develop a trust relationship with these women and sustain it over a long period of time – and evolved from an organization helping women understand how to stay alive and prevent transmission to their child at birth to an organization that focuses on the retention of HIV-positive women in healthcare. There are a lot of needs those moms have over time after the baby is born – making sure they adhere to exclusive breastfeeding or exclusive formula feeding, making sure they use condoms, improving their nutrition, etc. – because we know that a child born into an HIV-exposed family has a higher mortality rate than a child who is not.

This act of pivoting requires a lot of different people to help you think through what the next steps are and forces you to go outside that comfort zone of what you are known for. But that’s exactly why I can’t imagine doing anything else.

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Frank Beadle de Palomo was interviewed by Katherine Milligan, Director and Head of the Schwab Foundation for Social Entrepreneurship.

Image: A woman with her child strapped onto her back attends a support group for people with HIV and their families in Agoe-Nyive, a suburb of Lome, April 16, 2013. REUTERS/Darrin Zammit Lupi