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Reaching people “beyond the end of the road”

06 December 2018

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“If you plan to help the poorest of the poor – the people, to coin a phrase, who are ‘beyond the end of the road’, you can change the course of your nation.”

Dr Mwele Malecela, a health scientist from Tanzania, is taking up a leading position at the World Health Organization (WHO). We met her as she was transitioning into her new position at WHO headquarters in Geneva, Switzerland.

As she settles in to her modern offices, with the rust-coloured leaves of a European autumn covering the ground outside, she sometimes finds her thoughts racing back in time.

She goes back 30 years, to the Tanzanian village of Kichalikani on the shores of the Indian Ocean.

“It was an idyllic-looking seaside settlement with thatched buildings and coconut palms”, Dr Malecela recalls.

But the reason why the young research scientist was drawn there, over a generation ago, was not tourism – pretty though the coastal village might have been.

She was embarking on a career dedicated to fighting the viciously debilitating limb-swelling disease which speakers of her native KiSwahili language call matende – which roughly translates as ‘big foot’. It is also commonly known as elephanitiasis and scientists call it lymphatic filariasis

“In those days”, the newly-appointed Director of the WHO Department of Control of Neglected Tropical Diseases says; “when you went to a village like Kichalikani, you would ask if anyone had matende and you would be told ‘no’”.

Such was the stigma and ignorance surrounding the affliction that people with the parasite often didn’t know it; and people manifesting the symptomatic swollen limbs or scrotums simply hid from view.

“But when you looked deeper in some villages, one or two cases would then emerge. Then, sometimes, hundreds would be counted in one area. It was much more widespread than we thought.”

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Those early days for the young scientist inspired her to work harder against neglected tropical diseases (NTDs). The progress that has been made in fighting the disease in Kichalikani is, for Dr Malecela, a personal symbol of the wider successes in tackling NTDs.

She moved on to the London School for Hygiene and Tropical Medicine to take a PhD. Then it was back home again, where she established Tanzania’s first National Lymphatic Filariasis Programme on Mafia Island, just off the Indian Ocean coast, in October 2000.

Years later she rose to become Director General of Tanzania’s National Institute for Medical Research, moving on later to become Director in the office of the WHO Regional Representative for Africa. She officially started her new role in Geneva on December 1 2018.

“The beauty of my job has been that I was able to see places like Kichalikani and Mafia, when we had few solutions or medicines for these diseases. But now, by contrast, I can go back and see, thanks to the hard work many people have done, that there are now fewer and fewer people with lymphatic filariasis”,Dr Malecela says.

“That makes my job. That makes my day. For all the dismissal of the sceptics, I know it is possible to fight these diseases. I can look back and know that there are far, far fewer cases of matende in the Kichalikani area. I know that for a fact.”

“When I went back to Mafia Island in 2006”, she enthuses, “I visited a school. When I asked how many children had filarial fever – which was a well-known condition, there were none”;

“This was in stark contrast to 2000, when half the school would have experienced these debilitating fevers, causing them not to attend classes. This to me is what progress looks like.”

Reaching this point has required innovation. The new Director of NTDs at the WHO recalls one initiative she took in her home country of Tanzania. During a speech to Parliament by the Health Minister she erected a poster outside the building that Members of Parliament (MPs) could not ignore. It showed which constituencies had diseases and what the programmes were to counter them.

This concentrated MPs minds and encouraged the government to commit to budgetary ‘line items’.

Dr Malacela thinks domestic ownership – and some financing – of NTD programmes is critical.

“Otherwise”, she says, “there’s a danger the programme is considered someone else’s. If you have domestic ownership there is accountability. While we are appreciative of partner funding, we need sustainable funding to get us to the end of the end game and this must be through domestic financing of NTD programmes.”

“The most important thing is that these diseases affect the poorest of the poor. And one thing that brings votes is lifting people out of a cycle of poverty. If you plan to help the poorest of the poor – the people, to coin a phrase, who are ‘beyond the end of the road’ – the return on your investment is great….you can change the course of your nation.”.

When asked if there was one thing she would like to prioritise, Dr Malecela replied “surveillance and data, as well as innovating for new tools and diagnostics for NTDs.”

“We need to be vigilant in our surveillance and how we measure progress – for example if we interrupt the transmission of a disease, which is vital, we need to keep checking and rechecking over the years to make sure it doesn’t come back.”

“And data is vital, too. If I see data telling me a certain disease is persisting, that may be due to a hotspot or other factors in play. We have to get to that data to the decision makers fighting the diseases. In short – using data for decision support.”

Dr Malecela speaks of unprecedented progress achieved over the past decade; however, while we are well ahead of targets for some diseases, she concedes that we are unlikely to meet all of 2020 targets for eliminating NTDs .

“We are not there yet. We have made tremendous progress. There are a number of countries that have verified the elimination of lymphatic filariasis, for example, and a number of countries that have verified the elimination of blinding trachoma [the leading cause of infectious blindness]. We need to revise our road map to 2030, looking at all the areas of work to see where we can accelerate our efforts.”

But Dr Malecela nevertheless believes the world is doing “excellently” in the fight against neglected tropical diseases;

“It is now about getting to the end point”, she stresses. Diseases that were barely mentioned in years gone by, Dr Malecela says, are now talked about at high-level events and in public health fora.

“There is a lot of excitement” in the world of NTDs, she says, “and I am honoured to be joining the NTD Department at this time.”