The reality of what happens when funding for Neglected Tropical Diseases is suddenly turned off, as told through a programme leader’s diary entries.
Suraju an ophthalmic nurse screens eyes of children in Sokoto State, North-west Nigeria in 2019. The work was supported through the Ascend programme. Credit: Andrew Esiebo/ Panos pictures/ Sightsavers.
30 April 2021
Such a dreadful week. The UK government is cutting funding almost completely for work treating neglected tropical diseases. This could amount to a cut of as much as £38 million ($52 million) for the programme I work on at Sightsavers and at least £150 million ($204 million) in total. We knew cuts were coming but never expected they would be so dramatic. They say that our work has always been excellent and blame the “unprecedented circumstances” of Covid-19 on the UK economy. I am heartbroken.
The diseases I work on were called “neglected” for a reason. They hit the poorest and most marginalised in the world, cause intense pain, and stop people from going to work and school. Trachoma turns your eyelashes inside out, literally scraping your eyes until you go blind. River blindness is caused by a parasite whose larvae leads to intense itching and, if they reach the eyes, irreversible loss of sight. Lymphatic filariasis, spread by mosquitoes, makes limbs swell painfully.
More than half the population of Nigeria, where I am from, are at risk of at least one of these devastating diseases. Yet they are all preventable. Over the past two years, UK funding has helped us deliver more than 250 million drug treatments, trained more than 800,000 community volunteers and teachers, and provided 11,000 surgeries across 13 countries.
We estimate the cuts could impact more than 100 million people. I am angry and struggling to understand this decision. We have achieved so much, even through Covid. This January, I watched a video of the British Prime Minister, on World NTD Day, saying how important this work is. Now it feels as if the UK government is saying “we don’t care”.
5 May 2021
I keep thinking of individuals whose lives we’ve changed thanks to UK funding. People like Muzi, a seven-year-old boy who was diagnosed with an advanced form of trachoma. He was withdrawn and clearly in a lot of pain. If left, he would have gone completely blind but with surgery we were able to save what was left of his sight. When the team returned to his village, he was playing with other children and enrolled in school. It was such a transformation.
It could be a very different story for others now in the same position as Muzi.
10 May 2021
The UK broke the news to the Nigerian Federal Ministry of Health in a letter. It’s really happening. The ministry is shocked and concerned. This is a big set-back. This year, trachoma was eliminated in The Gambia. So much time and money has been invested in Nigeria towards achieving the same dream. I hope the cuts will mobilise my government to become even more committed to this goal. We can’t give up now.
The government must now break the news to all the local health workers and community volunteers. These are the people who work so hard in remote communities to get antibiotics to all the people who need them and find people who need surgery.
1 June 2021
We are hoping new funders might pick up the costs of the 9,000 surgeries needed to save the sight of people with advanced trachoma. People like Ibrahim who has been suffering for more than ten years and whose excruciating pain, particularly in bright sunlight, means he can no longer farm. Or 20-year-old Ubaida who pleads with the doctor to take away the pain. It’s so cruel to have given people hope and now tell them we can’t help.
I should be coordinating with ministry of health staff to arrange their surgeries. Instead, I am busy preparing a briefing for possible alternative funders. They want to know what our most urgent work is and if we have drugs that could go out of date. Pharmaceutical companies donate millions of pounds worth of drugs every year, provided donors like the UK cover the cost of delivering them. In our case, we have some Praziquantel tablets, used to treat schistosomiasis or “snail fever”, that will expire in September. We hope new donors will help us get these drugs to the people who need them.
These activities are easier to explain and get support for. Other losses are harder to quantify. The UK funding had allowed us to bring in specialists with the skills to make our health care systems stronger in the future. Who will support this now?
9 June 2021
I have been talking to the NGOs we work with. They are shocked too, but we are working together to meet the challenges.
It is incredibly hard to stop in the middle of a job. There is so much more to do. But whatever happens, we’ll be leaving the health system stronger than before we started. We have trained hundreds of thousands of health workers and community drug distributers, and those skills cannot be taken away from them.
28 June 2021
I am trying to stay positive and think about everything we have achieved. Last year, we moved heaven and earth to adapt our programme into a behaviour change campaign to help Covid-19 prevention. We developed engaging television adverts, radio jingles, social media content, billboards, posters, and flyers. We trained community health workers and volunteers to help raise awareness. We also involved influential community figures such as religious and traditional leaders to ensure messages were trusted.
We have reached so many people and I’m so proud of what we’ve done. At the same time, it’s hard to think about all the things we might have achieved with another year. I wonder if we’d kept the UK funding, would we now be supporting the vaccine roll out in those communities?
6 July 2021
Our official end date is November, but we have to finish our work on the ground by the end of August. As of today, our team has completed 403 surgeries and they are confident we will be able to finish the rest before the time and money runs out.
I want to make sure that people who have already been promised surgery for hydrocele get their treatment. This is a horrible condition caused by lymphatic filariasis where men’s testicles become painfully swollen. It leads to disability and stigma. The surgery to treat it transforms lives.
19 July 2021
A funder we have worked with before has come forward and we may be able to carry out more surgeries and share more drug treatments for river blindness and lymphatic filariasis. It will be a few more weeks before we know for certain, but I am excited. It won’t cover everything. We are still under huge pressure to fill the remaining gaps, but it is a start.
2 August 2021
The UK government have confirmed we don’t need to return any equipment paid for through their aid – such as vehicles and office equipment – as long as it’s still used for NTD work where possible. In Nigeria, there are more than 150 UK aid-funded motorbikes used to reach remote communities on bad roads. The motorbikes are vital to our work so this is a massive relief.
I am catching up with the teams in the different states we work in. They have been carrying out final hydrocele surgeries, making sure that information about patients is logged, and finishing admin tasks.
There is so much uncertainty about what happens next. We must keep trying to prove the value of what we do so we can get it funded. I fear very much that there will be many jobs we can’t do. We will miss life-changing drug administrations needed to end the spread of diseases like lymphatic filariasis. There will be patients we can’t support for the resulting lymphoedema and, as a result, their painfully swollen limbs may become infected.
We will keep working and fighting, but the bottom line remains that there will be millions of people, in my country and others, who will suffer unnecessarily from preventable diseases because of these cuts.
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Dear diary, today the UK took $200m away from the most marginalised - African Arguments
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