Could river blindness lead the way?

From women researchers to community control of health, APOC holds many of the answers for Africa.

SUMMARY: Uche Amazigo, now Director of the African Programme for Onchocerciasis Control (APOC), in 1991 discovered the terrible burden of this parasitic disease carried by river-flies – not in the form of “river blindness” in the elderly, then considered its main burden – but as life-altering skin disease in young women. She argues passionately for more women scientists in Africa – to study the specific health problems women face, that they won’t reveal to men; explains APOC’s success in giving communities control of their own treatment; argues for a continuum between research, policy and implementation; and rails against governments’ failure to care for their people.

(May 06)

RHN: Tell us the story – how did you discover the importance of skin disease in onchocerciasis?

UA: I was a teacher and researcher at the University of Nigeria in Nsukka, in Eastern Nigeria, working on schistosomiasis and oncherciasis and malaria – tropical diseases.

But I was also very interested in social issues affecting women. So I would go out into rural areas, as a hobby, once a week, and talk with the women there, and advise them on improving their lives, nutrition and overall health status.

I would visit them when they came to their antenatal clinics – that gave me the chance to meet many women, and talk to them about children, about parasitic infections. And on one of these trips a nurse called my attention to a young girl – a very pretty looking girl – and I was shocked, devastated, at the type of lesions I saw on her body. And she was pregnant as well, visibly anaemic, and very weak.

And the nurse told me from her experience, without any tests, that she thought the lesions were caused by a filarial worm. So being a researcher I decided to take a skin-snip [to look for worms] from the girl – her name is Agnes – and make a preliminary study in her village. I found she had the microfilariae (young parasites) of Onchocerca volvulus (the cause of river blindness when the microfilariae build up in the eye), but in very small numbers. But she had very bad skin disease.

At that stage I was more interested in saving her life and that of the child, because she was pregnant, so we gave her iron for her anaemia and other drugs to save her and her baby. Then I thought I should take photographs of her progress, and [in 1991] I sent them through Carol Vlassoff, Manager of the Task Force on Social & Economic Research, to Tore Godal, then director of the UNDP/World Bank/ WHO Tropical Disease Research Programme (TDR) in Geneva. The Task Forces he set up supported the work of many African young women in research. And as soon as she’d seen the pictures, Carol advised me to send in a research proposal on oncho in women.

Interviewing Agnes I found her husband had deserted her – because her lesions were very stigmatizing and awful looking. She was incessantly itching and scratching herself. I found many other women in the same village in the same condition, but I particularly followed and photographed Agnes and one other woman.

The two were ultimately treated annually with ivermectin – which kills the microfilariae.

Ten years later, in 2002, we went back to visit her from APOC, and we found that Agnes’ skin lesions had improved, her husband had come back to her, and she’d become an ivermectin distributor in her village and was very proud! People would come from other villages to ask her how she’d managed to get rid of most of the lesions. You could see the scars, but they were no longer the unsightly acute dermatitis that she’d had in 1991.

So each time I came to her village she hugged me! She was so pleased! I think that was one of the greatest moments in my life, to see her so very happy with her husband, her children, her family. And now she’s like an ambassador to APOC. So we had to report that in the Annals of Tropical Medicine and Parasitology in 2004.

RHN: And did that first baby survive?

UA: Yes, yes!

RHN: You said that Agnes actually had very few microfilariae in that first skin-snip. So was she reacting particularly badly to them? Or do most women react in the same way?

UA: I think the pregnancy was exacerbating the lesions. Because I realize the lesions began to dry up, a bit, after pregnancy.

RHN: So how important was this discovery?

UA: Oh it was important to OCP! [This was the then blindness-focused onchocerciasis control programme in 11 countries of West Africa, in which the disease has now been greatly reduced by community-directed ivermectin treatment].

TDR picked up our report, and we developed a tool to determine the prevalence of oncho outside the OCP areas. And when we realised the magnitude of the problem, in 19 more countries in Central and East Africa, TDR used it to make the case that while we should pay attention to blinding oncho, skin-disease caused by oncho plagues many more countries and people.

And that led to the nongovernmental development organizations, the donor community, the UN agencies, and TDR to launch the African Control Programme, APOC.

There were more cases on skin disease than blindness in these countries. There are places with both, like Sudan and Chad and northern Nigeria, but in the Democratic Republic of the Congo and southern Nigeria for example, in the forest areas, you are dealing mostly with skin disease. It’s to do with variation in the parasite and the fly.

RHN: So you were really very lucky to get your message over so quickly!

UA: I was lucky that I had people like Tore Godal. He really did something fantastic for Africa, which I think many people have recognized. He gave voice to developing country female scientists. Many of us were given a chance to serve in the WHO and TDR task forces. People like Jane Kengaya-Kayondo [a member of the RealHealthNews Advisory Board – see story on home-based management, page 10]. There were quite a number of us. Tore gave us the limelight and gave us very unique opportunities to be heard. That helped a lot of us.

And from there I moved to Harvard, and there the Takami Programme in International Health gave me an excellent opportunity to sell this message to the world.

RHN: This was good for you women scientists personally, but it was also good for women in Africa as a whole, wasn’t it, because you focused on gender problems.

UA: Absolutely.

RHN: So how well established is that principle? Do we still need more African women scientists?

UA: Oh yes. We are too few to make a difference. Very few. We need more women scientists. I hope our work will be an encouragement to African women, to be liberated – liberated from fear of competing in the world of science, in a man’s world. A world of science and leadership. My dream is to see more women in national and international leadership positions, in governance and health.

RHN: Looking at it from the point of view of ordinary women in Africa, and also from the point of view of policy-makers who want to improve health – it might be Ministers or international policy-makers – what opportunities are being missed, by there being so few African women scientists? What might they achieve?

UA: Oh, the opportunities! You know we have diverse cultures in Africa. But for many African communities and cultures women have more access to women, than men do. Bringing in and encouraging more women scientists will help us to reach women – who are the primary caregivers and providers of health! We can begin to understand better how to deal with health issues, and to work in partnership with communities and with women. Particularly those in very remote areas.

When I began my study on skin disease, for example, I enrolled in women’s groups, and would attend their women’s meetings, just to understand more. And this is what a male partner or scientist cannot do! To understand the social implications and psychological effects of disease on women, how it affects their social life, their entire lives, and what they can do to improve that, we need women scientists!

With oncho skin disease many of them had been divorced or their husbands had taken second wives, many had been stigmatized, they are not as economically productive, their children drop out of school.

So bringing in more African women scientists will help the world to understand the intricacies in public health, particularly for poor countries, and improve health in these regions.

RHN: I think that’s extremely important, what you say about the access to women, and the fact that women are the principal health carers.

UA: They are, they are.

RHN: You could think of issues in HIV/AIDS for example where it is obviously crucial to know the point of view of the women…

UA: Exactly. And women are the ones who can open up to each other. If you interview a woman, and you are a fellow woman, and you are down-to-earth with her, she will tell you things that she would not tell even medical doctors. And that crucial angle is extremely important in dealing with disease control.

RHN: Tell us more about APOC. Your principal tool is community-directed treatment with ivermectin [ComDT], isn’t it?

UA: Yes it is.

RHN: How does it work?

UA: Let me say that effective interventions [for many diseases] exist. They just do not reach the people who need them most – the poor in very remote communities. So for us, prior to launching ComDT, not enough was known about what systems can ensure that such people can get access to a drug like ivermectin – regardless of their locations, even in a conflict area, 50 miles from the end of the track, far removed from the health services. This was the challenge we faced when ivermectin became available.

So we did research. You know oncho control has always been based on research: we have a tradition that policy and decisions are always based on research.

I was in the task force to develop ComDT, and TDR asked the simple question: ‘can communities themselves distribute this drug?’ And the research showed that if communities are empowered to distribute and join in this business, the coverage rate would be higher and the distribution mechanism was likely to be sustainable.

Distribution needs to be sustainable, as we need to give ivermectin for more than the life of the adult worm – about 15 years.

[Individuals infected with onchocerciasis harbour one or more adult worms, the macrofilariae. Alone they are relatively harmless, but they constantly produce thousands of young – the microfilariae; and these microfilariae do the harm of onchocerciasis, causing skin disease and in some cases blindness. Ivermectin kills the microfilariae but not the adult worm, so retreatment is necessary annually until the adult worms die a natural death.]

RHN: So what is the technique – how does it work? Is there training?

UA: It’s more than training. The principle is community participation. Which means villagers make decisions themselves to select their own distributors; to plan the time of distribution; to select the location, and the mode of distribution – whether they want the distributor to come house-to-house and give them the drug, or whether they want to come to a central place in their community to take it.

Communities supervise the distribution; and the distributors are trained by the health service. APOC now has 261 000 community drug distributors (CDDs) in 16 countries. The CDDs are also trained to prepare a census record, which is now a big advantage to immunization programmes because these records help them – and other programmes – to identify children under five years old very quickly.

So the communities plan; they select the distributors; they are trained; but the community do the distributing. And the collection of the drug from the peripheral health service is even paid for by the community. They send their distributors – and some of them walk up to 14 km – to go and get this magic bullet.

RHN: When you say “the community” takes charge, what kind of people are you talking about? Who are these people who become involved?

UA: The community leaders call a meeting of community members, men and women. In most communities, given our tradition, we have more men than women attending the meeting. But once the decision is made, all good men and women comply, including those who did not attend. But we are trying to get more women to participate in those meetings.

RHN: Let’s generalize this a bit. ComDT has been applied to other kinds of treatment, for other conditions, hasn’t it. What can other programmes learn from what you’ve achieved with ivermectin and ComDT?

UA: I’m not sure that other programmes apply ComDT in the way we would prefer. Some programmes “short-change” the process. For us, what is important is the process of involving communities in decision-making – allowing them to be in the business as a full partner, making decisions on the whole process.

RHN: So that it belongs to them?

UA: So that it belongs to them. What has happened in the last ten years is that immediately programmes saw the benefits of the APOC strategy of ComDT. They’ve adopted part of it, by going to villages to use our distributors, without consulting with the entire community, without allowing the community to go through the whole process so that it owns the intervention. That is what is missing for now.

RHN: You are talking about other programmes like vitamin A and so on?

UA: Yes, exactly.

RHN: But to get the community involved in distributing a product, you do really need a magic bullet [one that they can see clearly works], don’t you.

UA: Not only a magic bullet, but social mobilization, sensitizing them, meeting with their community leaders, going to schools to talk about the importance of participation. So we do a lot of advocacy at a community level.

And of course we need the magic bullet. And the communities have recognized that ivermectin has other benefits – some communities want ivermectin more than once a year.

RHN: What other benefits?

UA: It acts as an antihelminthic too.

RHN: How important would it be to find a macrofilaricide, to kill the adult worm?

UA: Oh, that is my dream, my hope! My dream would be to get it to every infected person, in every community, a safe macrofilaricide – we have to emphasize that it must be safe. That would be wonderful.

RHN: We are still a long way from that, I think.

UA: We hope it will not be too long! There are molecules in the pipeline…

RHN: How does ComDT relate to a programme like the Home Management of Malaria [see this issue page 10]?

UA: Very well. Let me share with you what happened recently. Two years ago APOC provided funds to TDR to find out from communities themselves what other interventions could be included into ComDT. The first report of this study is out, and the communities informed the researchers in several sites in five countries that their most important concern now is malaria, and that they would like ComDT – the oncho control programme – to take on malaria as the next important issue.

And of the components of malaria control we find two of them – but particularly the home management of malaria (HMM) – where the APOC outreach, resources, community mobilization, our quarter-of-a-million distributors, our 100 000 communities could help HMM identify fever cases in children, reporting them immediately to the peripheral health service, and supporting the health service to take care and reduce mortality in the under-fives.

So already WHO AFRO and APOC are preparing a protocol to pilot this initiative.

RHN: You mentioned two interventions against malaria – what is the other?

UA: The distribution of long-lasting mosquito nets.

RHN: Oh yes, the insecticide-impregnated bednets.

UA: Yes. Our distributors know the families. They can help in distributing the bednets – correctly. And in keeping records for the health system and the donors.

So it would be a pity if people missed the opportunity of using APOC to improve health and achieve the Millennium Development Goals! APOC is one programme that is firmly in place now in 16 African countries that are highly endemic for malaria, and some of them with big problems with HIV/AIDS. And APOC has structures in place, communities who are sensitized, that can be harnessed to reach the MDGs.

RHN: Do you have the human resources in APOC to do all this?

UA: In APOC, we facilitate from Ougadougou [the capital of Burkina Faso]. So all our activities are done at the country level, by the Ministries of Health. We have the human resources at community level – there we don’t need more. But we need human resources at the front-line health facility level – that’s where the problem is. There’s a crisis in human resources for the health system. That you know very well.

So governments need to increase human resources at the peripheral level, so the efforts of the communities can be harnessed, to build strong partnerships with the health system.

RHN: Oh I see – so you are saying that the communities themselves are not a solution to the crisis in human resources for health – they do need to have a good health facility to deal with.

UA: Of course. They are not the whole solution. But they are a big plus to solving public health problems. They pave the way to delivery of health services beyond the reach of the health system, and for the control of neglected tropical diseases.

We still have a challenge –maintaining the success of OCP in West Africa. Oncho control has been achieved in nine of the 11 OCP countries. But we have evidence that infected Simulium blackflies [the oncho carriers] have travelled up to 700 kilometres from areas in conflict, like Sierra Leone and Liberia, and are re-infecting countries that had been cleaned of oncho, like Guinea-Conakry.

It’s not like mosquitoes, which are local. The Simulium flies are very efficient and cross boundaries. So OCP countries must not relax and think oncho is a disease of the past. This would be very wrong. The countries must maintain surveillance, as the battle is not yet won.

So the donors – and the World Health Assembly – should have an agenda item on surveillance. It should be a buzzword at the Assembly. To maintain our successes. We should talk about surveillance for oncho, for guinea worm – where programmes have recorded enormous success. There should be slots in the WHA agenda to make sure that ministers are sensitized and informed. They should know that without surveillance, these diseases will come back to their countries!

RHN: Let’s come back to your point about the role of research in oncho control. How important has it been?

UA: I think research has been the lifeblood, the engine for oncho control. OCP had this tradition, and APOC continues with this. It’s been very important because research informs the donors and the ministers on which direction to take their decisions. This I find lacking in some control programmes, and I think that they need to be encouraged to see the very powerful and positive relationship between research, policy and implementation.

RHN: Can you give us an example of how it works, perhaps for people working in other programmes? Say you’ve got a result. Do you take it to the minister or to donors? How do you get that result to create policy and get implemented?

UA: Well the first example is the creation of APOC itself. After the first study I did, TDR repeated the study in eight countries and confirmed the importance of skin disease; that informed policy to create a pro-poor regional programme – APOC – which instead of larviciding to kill the flies, which research had shown was unsustainable and was very expensive, would distribute ivermectin.

The other research was the ComDT research that showed communities could do it themselves. That informed a decision to stop mobile treatment and begin ComDT.

RHN: OK. But what was the so-to-speak “political dynamics”, or even the personal and social dynamics, of how that knowledge created by research actually turns into action?

UA: There are lots of different interventions against different diseases in low-income countries that have been proved to be successful, which are not being properly implemented. There’s been a political or economic obstacle, or a failure of communication – there’s been some failure in moving from the knowledge [created by research] that an intervention works, to a situation where the intervention is actually being applied in a wide variety of countries.

RHN: But in the case of oncho, you got that knowledge into action. I’m trying to understand if there are some lessons here that we can learn for other interventions.

UA: I think the broad and committed partnership for oncho control played a major role. Before even OCP was launched, the World Bank President Robert McNamara came to countries in West Africa and saw valleys abandoned by many communities because of the flies. Then the Bank and WHO pulled together a partnership that turned out to be very committed and provided sustained funding.

So high-level advocacy is very important; as is strong partnership, well-defined objectives, and preparedness to listen to and invest in research. The oncho control partnership believes in research, and making use of research findings.

RHN: This is really an extraordinary programme. Because what you’ve been able to do is connect the voices and problems of ordinary African women, in the villages, with people like the President of the World Bank and others, so that something actually happens for those women. It is an extraordinary result, isn’t it?

UA: It is. You are absolutely right. I think the partnership had a big role, and the nongovernmental development organizations working on blindness played a significant role. But the Bank, and the WHO, and at that time the UN Development Programme (UNDP) and Food and Agriculture Organization (FAO) were also interested, because of the socioeconomic consequences, seeing abandoned villages and valleys. Now they have turned into fertile villages.

RHN: Absolutely. And when I look at what the world Bank says about OCP on its website, already by paragraph three it’s saying that the programme’s already achieved a 20% economic rate return.

UA: Yes, and for APOC we are 17%.

RHN: So it fits the strategy of a development bank – it works at an economic level as well as a personal level.

But personally, how do you hope to continue?

UA: Well I hope I can continue to be the voice of the unheard women in my region. Because when I go to communities, and particularly of course to remote villages, and find that there is absolutely no health service; no beds in the wards; and they tell you that you are the first person they have seen from the health system in the last four or five years, it breaks my heart.

There is a need for governments to think how to improve the health systems. The problem is not only resources. Of course they need resources, but we need some kind of advocacy to bring people to the villages. When I go on mission, I try to bring, say, the wife of a Governor of a State, to a community where a generation has gone blind from oncho. And they are begging us: please don’t allow the next generation to go blind!

You find that the lady with you has never been there; and she’s not even aware that in her state she has generations of extremely poor people who are blind. It means that the advocacy is perhaps not well coordinated.

We don’t know how to market the health issues. If we could improve the social marketing of health, governments might invest more in health and less on the military and wars. In APOC we have countries in perpetual conflict! We build, they destroy. We build, they destroy. In South Sudan we’ve lost five years of investment. And we are starting again. We need peace.

Governments should visit their people, not stay in the capitals. And develop health systems that truly decentralize from the central to the sub-district level. Because decentralization in some countries is just on paper. There is no financial decentralization. So when you get to the peripheral level, you find that they are making plans, but they have no money to act on them.

But health is as important as defence. And without health, the economy will continue to be in shreds. Yet I know that women have a role to play, and I would wish that women would be considered, so we have more voices to speak for the unheard. - RW

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