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'The job is not done': the fight to combat neglected tropical diseases

Global leaders need to take a “hardcore” approach to tackling tropical diseases that kill, blind, disable and disfigure more than 1.5 billion people in the world’s poorest and most marginalised communities, experts have warned.

Record-breaking progress has already been made in the fight against neglected tropical diseases (NTDs), but more must now be done to engage local partners, improve diagnostics, fill research gaps, and access sustainable funding, according to experts at a Guardian roundtable event in Geneva, supported by the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA).

“The job is not done and we have not finished,” warned Nathalie Strub-Wourgaft, director of the Drugs for Neglected Diseases Initiative. Many patients with bacterial or fungal infection mycetoma, for instance, still have limbs amputated, because there’s no effective treatment.

The World Health Organization has identified 20 neglected diseases that are found in tropical and subtropical conditions across 149 countries. These deadly, painful and disfiguring diseases, including leprosy, rabies, guinea-worm disease and snakebite envenoming, are strongly connected with poverty, and mostly affect people living in poor, marginalised rural communities, without access to proper sanitation and water.

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Because of this, NTDs, which are often ancient diseases, remained largely hidden from the international community for many years. But some progress has been made. The roundtable was held to coincide with the anniversary of the 2012 London Declaration on NTDs, which brought together the WHO, pharmaceutical companies and government representatives to pledge additional support and resources to eliminate the most common NTDs, including Chagas disease and trachoma.

More than one billion people a year have been treated for NTDs for the past four years and some diseases, such as sleeping sickness, have been almost eliminated, with fewer than 1,000 cases reported to the WHO in 2018.

But keeping up the pace of progress is vital. The WHO is set to release new goals to guide progress until 2030. Mwelecele Ntuli Malecela, WHO director for the control of NTDs, said the new roadmap would be a “hardcore approach” needed to make significant change. It will also encourage health workers to tackle all 20 diseases on the WHO list, rather than just the most common.

The plans will encourage global programmes to work more closely with local communities and governments, which have too often been left out of decision-making, according to Malacela. In the past, experts have “dropped in from 40,000 feet” and pledged to be in and out of a country within five years, she said. But a more collaborative approach is needed.

Thoko Pooley, director of the Uniting to Combat NTDs NGO, agreed that local scientists, healthcare workers, volunteers and private partners all need to be involved. “This really needs to be owned by the countries,” she said. “They should lead the conversation, with us offering support.”

Christian Burri, deputy head of the department of medicine at the Swiss Tropical and Public Health Institute, gave the example of the treatment of leprosy. Because there is often stigma around the disease, people don’t always ask for treatment and doctors may not recognise it, which can leave people with serious disabilities that could have been avoided if they were treated earlier. This can only begin to be addressed by working with patients and local healthcare workers, he said.

Such partnerships will also help to ensure the most vulnerable people aren’t left behind, said Rachael Thomson, director of the CouNTDown project at the Liverpool School of Tropical Medicine. “We’ve had huge successes, but have we [simply] treated the people who are easier to treat?” she asked.

Diagnostics also need to be improved. Catharina Boehme, chief executive officer at the Foundation for Innovative New Diagnostics, said there are “critical diagnostic gaps” for 13 of the 20 NTDs on the WHO list. “This could allow elimination to slip through our fingers and mean industry will be exhausted and no longer willing to provide drugs. So we need to measure and target better.”

Technology could help, Boehme added: seven out of 10 people in the world’s poorest households now have mobile phones and this is a big opportunity for better diagnostics. “Technology enables us to reach those we’ve not reached before,” she said. AI can also be used to help diagnose skin-based NTDs, while geospatial mapping can identify disease hotspots.

Private sector involvement in tackling NTDs has increased, according to Thomas Cueni, director general of IFPMA. But it’s important to focus on sustainable investment. “Donations are good, but [pharmaceutical companies] also have to engage with stakeholders and move beyond that to form partnerships,” said Lutz Hegemann, chief operating officer for global health at pharmaceutical company Novartis.

But there can be obstacles to pharmaceutical firms and NGOs forming partnerships because of differing priorities, said Philippe Neau, head of the neglected tropical diseases programme for global health at Sanofi. Everyone involved must have the same end in mind, he said.

Amy Dietterich, director of the global challenges division at the World Intellectual Property Organization, said successful partnerships included pharmaceutical companies sharing molecular databases with researchers.

More research would help, said Fiona Smith-Laittan, vice president of global health at GlaxoSmithKline, but money must be spent where it is needed most.

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Even though sleeping sickness is close to elimination, for instance, scientific questions remain, and panel members were alarmed about the real threat of “donor fatigue”.

Keeping up the pace of progress is vital. “Donors have to understand research is long term,” Strub-Wourgaft said. There is still much more that needs to be done, panellists agreed.

At the table


Catharina Boehme, chief executive officer, Foundation for Innovative New Diagnostics

Christian Burri, deputy head, department of medicine, Swiss Tropical & Public Health Institute

Thomas Cueni, director general, IFPMA International Federation of Pharmaceutical Manufacturers and Associations

Amy Dietterich, director, global challenges division, World Intellectual Property Organization

Jane Dudman (chair), Guardian public leadership editor

Lutz Hegemann, chief operating officer for global health, Novartis

Philippe Neau, head of neglected tropical diseases program for global health, Sanofi

Mwelecele Ntuli Malecela, director of control of neglected tropical diseases, World Health Organization

Thoko Pooley, director, Uniting to Combat NTDs

Fiona Smith-Laittan, vice president for global health, GlaxoSmithKline

Nathalie Strub-Wourgaft, director, Drugs for Neglected Diseases Initiative (DNDi)

Rachael Thomson, director, CouNTDown, Liverpool School of Tropical Medicine

• Roundtable supported by the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA). All content is editorially independent