I started out as a parasite specialist, but soon wanted to shift my focus to lymphatic filariasis, or elephantiasis. It was highly endemic in Tanzania at the time and there wasn't much being done about it.
My first experience of working with sufferers of the disease was very disheartening. I could see their physical deformity but I knew there was little I could do for them. It was a frustrating situation where I would go in and talk about the disease but not be able to do anything. For me it was very sad.
There was a drug around at the time – diethylcarbamazine – but we couldn't use it on patients because most of them who lived in the areas where we worked had something called river blindness, also known as onchocerciasis, and they would experience severe reactions to it.
In 1998, when the World Health Organisation announced its intention to eliminate lymphatic filariasis by 2020, I was central to developing a health plan for Tanzania – mainly because of my long experience of working in the field. I moved away from laboratory research and into the implementation of what we'd learned. Slowly, we started administering the drugs. We began on a little island called Mafia, off the coast of Tanzania, because we wanted to start small and learn from our experiences before scaling up.
Our first challenge was to ensure that all the people who were eligible for the drugs got what they needed. There were issues around the delivery and how to finance it. The drug itself is donated, but to circulate it to every sufferer involves a lot of extra cost. Initially we received donations from the UK's Department for International Development (Dfid), then from the Bill & Melinda Gates Foundation. And then we started to receive funds from the Tanzanian government, which is now our main source of funding.
But still, the problem is very big. We're looking at phenomenal figures. We have 36 million people at risk from elephantiasis and 6 million with the actual manifestations of it. It's a horrific problem in Tanzania.
For the millions of people who already have the disease, we make sure they know how to take care of themselves. We also help them to deal with the social stigma, which is terrible. Women have problems getting married and men have to deal with impotency and other sexual issues. I could really paint a very desolate picture of the disease.
From the point of view of many Tanzanians, the disease is considered to be a "condition", which in Swahili means something that one cannot explain. It's therefore associated with the supernatural, or the evil eye, rather than with something biological that can be transmitted by a mosquito. People who have elephantiasis are freaks or think they have been cursed. It makes them even more depressed. They think: "What did I do to deserve this? Whom did I cross?"
But the fact that we are now talking about the disease and information is available – this has opened people up. Sufferers know that the swelling can be stopped from getting worse; they know their lives can improve.
They can also be assured that something can be done about the smell. Unfortunately, because of the bacterial infection, people with lymphatic filariasis can smell very bad. This contributes significantly to their alienation. I think, after leprosy, it is one of the most stigmatising diseases you can have – people just want to stay away from you.
We're trying to upscale the drug administration. So far we have reached 9.2 million people, but we're still a far cry from the 36 million who need us. In monetary terms, we say that it takes at least 10 cents per person to deliver the intervention each year. But it's amazing how difficult it is to get that kind of funding, and with what's going on now with the world markets – well, we need to wait and see.
The drugs really work: they kill the parasitic worms that live in the body. Somebody who takes the medicine once a year is decreasing the amount of parasites in their blood. This means that less infected blood gets spread around by mosquitoes, and this helps to break the cycle.
The medicine also stops filarial fever. These fevers are debilitating and can keep a person in bed for up to four days. It's a vicious circle because these people are already poor, and when they have these fevers they can't work at all. A lot of people say: "OK I know I've got filariasis, I know my leg is going to stay swollen – but can't somebody stop me from getting these fevers?" And one of the things that we're hearing back from patients who take the drugs is that they are experiencing a reduction in fevers.
In some cases it has been shown to reduce the swelling too. Now this was unexpected. We were so sure that all the drugs were going to do was kill the parasite and reduce transmission, but patients started coming back to us, saying: "Look! My legs have shrunk!" So for people with low-grade fluid retention, or lymphedema, it does seem to be working in a different way, and we need to carry out more research to find out why. It's great because now a lot of people are promoting our programme – our patients are our best advocates at the moment.
Rehabilitating people is something we're working on really hard at the moment, as well as getting patients back into the community. We want to involve the same village helpers who deliver the drugs in the actual care of the patient. For their part, they've shown a lot of interest in wanting to support people with the disease and provide help to sufferers who have undergone surgery. This is an exciting development for us.
Sometimes I go through periods of gloom, when I wish that we had been able to work faster on this. But I think that given what we've done in the past eight years, the programme has been a phenomenal success. We need to upscale to cover the whole country otherwise all the gains we made at the beginning will be lost. If we keep going slowly then the infection will pass back from untreated areas into the places where we have been successful.
There's so much going on in the world that it makes everyone cynical. But here we have a phenomenal partnership between private companies and pharmaceutical companies (who receive a lot of bad rap) and countries and NGOs and other different groups. It's a model partnership. Except that, quite honestly, in terms of the 10 cents, I think a lot more should be donated.
