"I first heard about Neglected Tropical Diseases (NTDs) last week. I had to Google what they are. The thing that struck me most is that they are preventable and treatable. They are ‘diseases of poverty’ and the injustice of that makes me angry. It makes me want to take action. I noticed there was no news on what young people are doing in the fight against NTDs. There doesn’t seem to be any youth engagement. The positive news is that there are tangible solutions to tackling and eradicating these debilitating diseases.

"I want to be part of the youth movement to combat NTDs as I know we could be the generation to bring about lasting change,” said Jenny Njuki during the Kigali Summit on Malaria and NTDs in Kigali the week before last.

Njuki is Advocacy Communications Officer, Youth Advocacy Project, Amref Youth Combating NTDs. She is committed to helping in the fight against NTDs.

January 30 marks the first-ever World NTD Day that seeks to raise awareness on NTDs and ensure these diseases are placed high on the global agenda.

The World Health Organization’s NTD 2030 road map will be launched during the Kigali Summit on Malaria and NTDs in June.

The NTD 2030 Road Map will set the global agenda for the next decade of action for NTDs to truly reach the 2030 targets.

The Kigali Summit on Malaria and Neglected Tropical Diseases itself will serve as the first pledging event to fund the next decade of work on NTDs, seeking to secure US$1.5 billion in funding to deliver on the WHO 2030 NTD road map.

UNDERSTANDING NTDS

Janvier Ruzindana, a general practitioner at La Nouvelle Clinic in Remera, Kigali, says NTDs are a group of 20 debilitating infectious diseases.

More than 1.5 billion people are at risk of an NTD. They disable, disfigure and sometimes kill — keeping children out of school and adults out of work, in turn trapping communities in endless cycles of poverty and costing developing countries billions of dollars every year.

He says NTDs thrive in areas where access to healthcare, adequate sanitation and clean water is limited, such as in remote and rural areas, informal settlements or conflict zones.

The diseases affect some of the world’s poorest, most marginalised and remote communities, predominantly in Africa, Asia and the Americas.

Ruzindana says some of the NTDs include; schistosomiasis, lymphatic filariasis, trachoma, river blindness, intestinal worms among others.

More than 1.5 billion people — one in five people alive today — across 149 countries are at risk of an NTD. Currently, over a billion children require treatment for NTDs. The sheer number of people at risk from these diseases is staggering.

229 million people require treatment for schistosomiasis alone, 893 million people require treatment for lymphatic filariasis, while 178 million people live in areas that are endemic for trachoma; which is the leading cause of infectious blindness in the world. 217.5 million people require treatment for river blindness (onchocerciasis), 1.073 billion people require treatment for intestinal worms (soil-transmitted helminths)

In Rwanda, approximately 4.45 million people received treatment for two NTDs in 2017, intestinal worms and bilharzia. Thanks to the government’s commitment to NTDs and strong community interventions,

99 per cent of people require treatment for intestinal worms, and 62 per cent of people in need of treatment for bilharzia received treatment in 2017.

Overall, nearly 40 per cent of people in Rwanda are affected by NTDs.

Thoko Elphick-Pooley, the director of Uniting to Combat NTDs, based in London, says it’s also important to note that NTDs disproportionately affect women.

"Women bear the largest burden of infection and consequence of disease predominantly through socio-cultural reasons, and through biological factors,” she says.

For instance, she says, female genital schistosomiasis (FGS) is a waterborne NTD affecting 56 million African women and girls, yet it remains widely underreported, under- and misdiagnosed and largely untreated.

Moreover, she notes that women living with female genital schistosomiasis can be at three times the risk of contracting HIV.

Meanwhile, Thoko says Africa is disproportionately affected by neglected topical diseases (NTDs).

And that it accounts for almost 40 per cent of the worldwide NTD burden. However, she goes on to add that the continent has seen an incredible amount of leadership and progress over the past decade in ending NTDs.

For example, in May 2016, WHO Regional Office for Africa created the Expanded Special Project for Elimination of Neglected Tropical Diseases (ESPEN), to accelerate the elimination of NTDs in Africa by disseminating best practices, coordinating activities, and offering technical guidance where needed.

Since 2012, 31 countries have eliminated an NTD (one of the 10 NTDs included in the London Declaration), eight of them in Africa.

Despite these, Thoko says there is still more that needs to be done in order to end NTDs in Africa.

"The reality is that global control and elimination targets cannot be met without increased financial support, stronger political commitment and better tools to prevent, diagnose and treat the diseases,” she says.

WAY FORWARD

Though tremendous progress has been made in reducing the burden of NTDs since the London Declaration, Thoko says global control and elimination targets cannot be met without increased financial support, stronger political commitment and better tools to prevent, diagnose and treat the diseases.

Private and public partners, including country governments, will need to commit to ensure interventions reach all people affected by these devastating diseases.

Besides, Thoko notes that strong leadership from affected countries is also vital to sustaining progress against NTDs.

In order to meet control and elimination targets, she says more research and development is needed to provide NTD programmes with improved tools to prevent, detect and treat the diseases.

PREVENTION

Dr Mwele Ntuli Malecela, Director of the Department of Control of Neglected Tropical Diseases at the WHO says currently, WHO recommends five strategic approaches to tackling the burden of NTDs.

She says these include preventive mass treatment of populations at risk, individual treatment for complex NTDs.

WHO also recommends integrated vector management to prevent transmission of vector-borne diseases as well as facilitating access to safe water, better sanitation and hygiene, and, veterinary public health for diseases which affect both humans and animals.

WHO also prioritizes 20 diverse NTDs. They represent a mix of parasitic and bacterial infections that are transmitted through a range of vectors, such as mosquitos, worms, snails and sand flies.

"As you can imagine, there are many different ways one can be infected, but the common factor is that NTDs thrive in poverty; specifically, in areas where access to healthcare, adequate sanitation and clean water is limited, such as in remote and rural areas, informal settlements or conflict zones,” says Thoko.

YOUTH INVOLVEMENT

By 2050 Africa’s young population will increase by nearly 50 per cent, meaning the continent will have the largest number of young people in the world.

According to Thoko, these young people are not the future’s leaders, they are today’s leaders.

"This is the generation that could see historic achievements in the fight against NTDs. We don’t want future generations to be limited by the same preventable and treatable diseases that affected their parents and grandparents,” she notes.

"We need to break this cycle. This is the decade to put an end to diseases of poverty and amplify the fight against NTDs,” she adds.

Further, she notes that engaged and empowered young people are essential in making this happen, to raise awareness about these devastating diseases to communities everywhere.

"Their creativity and influence online and offline is unparalleled. With their energy, I am confident we will be able to beat NTDs for good. Youth should not wait to be invited to the table, they must demand a place,” she says.