Neglected Tropical Diseases by Mediaplanet UK&IE

Q3 2021 | A promotional supplement distributed on behalf of Mediaplanet, which takes sole responsibility for its content

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Initial symptoms are fever and headache but with monkeypox there is also a swelling of the lymph nodes in many patients, which was not observed for smallpox.

Why we need to be more aware of monkeypox COVID-19 has brought infectious diseases to the forefront and now monkeypox is a condition which needs wider visibility and attention globally.

E INTERVIEW WITH Florian Lienert Product Lead Medical Affairs, Bavarian Nordic WRITTEN BY Mark Nicholls

xperts are looking to raise awareness of the rare viral infection monkeypox amid concerns that cases of the condition could rise in western countries as COVID-19 travel restrictions are eased. The disease was discovered in monkeys in the late 1950s, and the first human case was detected in 1970. In the last few years there have been outbreaks in Nigeria and the Democratic Republic of the Congo, with cases subsequently exported to the United Kingdom, the United States, Israel and Singapore. Governments, public health officials and clinicians are now being urged to be more vigilant of the condition amid concerns that more cases may be observed. Less severe Dr Florian Lienert, Product Lead Medical Affairs at Bavarian Nordic, explains that the symptoms of monkeypox are similar to those observed in smallpox patients before the eradication of smallpox in 1980. The similarity of clinical symptoms is due to the close relatedness of the viruses that are causing these two diseases. “The disease is usually less severe than smallpox, but it can still have a mortality of 1-10%,” he states. Milder cases of monkeypox may go undetected and represent a risk of person-to-person transmission. The time between the exposure to monkeypox and first signs of symptoms can range between 5 to 21 days. Initial symptoms are fever and headache but with monkeypox there is also a swelling of the lymph nodes in many patients, which was not observed for smallpox. Typical skin symptoms with monkeypox include pustules and fluid-filled blisters, which generally disappear within 2-4 weeks. In most cases, people recover though there can be long-term sequelae and severity of the disease is higher in people with immune-compromised conditions. However, experts are concerned that “monkeypox might at some point occupy the epidemiological niche that was created because of the eradication of smallpox.”

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Travel restrictions Monkeypox, prevalent in central and western African countries, can spread from animal to humans and then be transmitted between people mainly through respiratory droplets, direct contact with infected secretions and from being in a contaminated patient environment. Recently, a person travelled from Nigeria to the UK this summer with monkeypox, which was subsequently transmitted to two other family members. Similarly, there was another case found in the US. Yet, with no clear picture of the extent of the disease in African countries, particularly in Nigeria, what is causing experts particular concern is the changing epidemiology of the condition. They are concerned that monkeypox has the potential to become a bigger problem.

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Vulnerable populations Smallpox vaccines are known to be effective against monkeypox, which may explain the small number of monkeypox cases before and in the years after smallpox was first eradicated. But since smallpox vaccination programmes were phased out, immunity within vulnerable populations to monkeypox is now less than before, explains Dr Lienert, leaving a population that has never been vaccinated against smallpox or only many decades age more susceptible to monkeypox. “With less immunity in populations against smallpox and other related viruses, this might explain this increase in monkeypox cases in these African countries and export to countries outside of Africa,” he says. There is also a growing generation of clinicians who will not be familiar with symptoms of smallpox or monkeypox. It is now imperative to raise awareness of the condition and support surveillance efforts, particularly as global travel becomes easier while COVID-19 restrictions continue to be eased. GL-ODA-2100001 – Date of preparation: September 2021

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WRITTEN BY Thoko Ephick-Pooley Executive Director, Uniting to Combat Neglected Tropical Diseases

How we can achieve the WHO’s Neglected Tropical Disease Roadmap Neglected tropical diseases (NTDs) are a group of 20 diseases that debilitate, disfigure and can kill those affected.

ncredible progress has been made against neglected tropical diseases. There are 43 countries that have eliminated at least one so far and 600 million people no longer require treatment for NTDs, proving that ending these diseases is possible. However, there is still a lot more work to be done until the world is free of NTDs, which is why the World Health Organization’s (WHO) 2030 Roadmap – which sets out targets to ensure that NTDs are eradicated, eliminated or controlled by 2030 – is so important.

COVID-19 has shown how highly connected the world is, how diseases don’t respect borders and why disease control can only be dealt with through global coordinated action. Setting out roadmap success Many factors will underpin the WHO roadmap success, but action at the community, national and global level is critical. At a community level: We need empowered and informed communities worldwide that can take charge of their own health. These must be supported by strong community delivery systems and public health functions which can respond to endemic diseases, ensuring the world is more resilient to epidemics. At a national level: Country ownership has been critical to progress on NTDs to date. Continued country leadership is essential if we are to deliver tangible results at scale.

This means countries creating and delivering country plans, integrating NTD programmes into national health services and as part of Universal Health Coverage plans, enabling domestic resource mobilisation and celebrating successes to demonstrate that progress is possible. At a global level: COVID-19 has shown how highly connected the world is, how diseases don’t respect borders and why disease control can only be dealt with through global coordinated action. As such, the eradication and elimination of NTDs must be recognised as a global public good whose benefits are of universal reach. This includes backing efforts to tackle NTDs with bold financial commitments, incorporating NTDs in global agendas, ensuring we have robust data and surveillance systems to track and respond to emerging infections and including NTDs as part of the global health security agenda and associated financing mechanisms. Equally, partnerships and collaboration among a wide range of stakeholders – governments, donors, civil society, the private sector and academia – are key if we are to move the dial on NTDs. These diseases are preventable or treatable, so it is within our power to end NTDs. We must each play our part at the community, national and global level to ensure that NTDs are eradicated, eliminated or controlled by 2030.

Join us and pledge to tackle NTDs by signing the Kigali Declaration: unitingtocombatntds.org/kigali-declaration

Joint action to combat neglected tropical diseases The global burden of neglected tropical diseases (NTDs) affects over 1.7 billion people living in poverty, predominantly in South America, Africa and Asia.

n the past decade, the global health community has made strides in controlling and eliminating NTDs – a group of diseases that can be painful and debilitating, not just in terms of health but also on livelihoods.

WRITTEN BY Ruth Musila Secondee, Global Health and Access, IFPMA

WRITTEN BY Vanessa Peberdy Associate Director, Global Health Policy, IFPMA

Multisectoral partnerships for greater impact The health, social and economic gains made with the WHO roadmaps on NTDs, and the implementation of the commitments of the London Declaration are tangible in families and communities. Over a billion people have been treated for an NTD and 42 countries have eliminated at least one NTD. For example, visceral leishmaniasis has almost been eliminated in Bangladesh and Nepal. Since the launch of the global programme for lymphatic filariasis (LF) in 2000, there has been a 74% decline in the number of people infected and a 43% reduction in the global population requiring mass drug administration. Togo recently became the first African country to eliminate both human African sleeping sickness and LF as well. We have also witnessed new ways to ensure these diseases are no longer ‘neglected’. Biopharmaceutical companies have been increasing investment in R&D for NTDs and, with over 30 cross-sectoral partnerships on NTDs, have been pioneering collaborative approaches to catalyse innovation. One such example is WIPO Re:Search, which unites public and private sector assets to boost early stage R&D in neglected diseases by matching resources and royalty-free sharing of intellectual property assets. WIPO Re:Search also bolsters research capacity in NTD-endemic countries by providing scientists access to researchers and resources that might not otherwise be available to them. Sustaining successes toward ending NTDs Despite these outstanding accomplishments, much remains to be done at global, regional and national levels. To maintain momentum and build on these successes, multisectoral partners will renew and reenergise their commitments and actions to control, eliminate and eradicate NTDs in the imminent Kigali Declaration in January 2022. Greater ownership by endemic countries and shifting the role of donor partners to filling gaps is a critical factor for long term, sustained success. Strengthening health systems of endemic countries in order to combat NTDs requires undeterred political will and commitment through countryled, targeted strategies whose operationalisation is supported by domestic resources. Together, through coordinated and consistent actions, we can determinably combat NTDs over the next decade.

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Sleeping sickness elimination is within reach. We can’t afford to give up now Sleeping sickness is a disease which largely affects remote communities in Africa and is fatal without treatment. Thanks to collaborations and innovation, there is hope that its elimination is within reach.

The next generation of diagnostic tools is urgently needed and essential funding required for tsetse fly control must not be thrown off course.

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n recent years, great strides have been made in the fight against human African trypanosomiasis (HAT), also known as sleeping sickness. A devastating disease which is endemic predominantly in remote areas of sub-Saharan Africa and is caused by parasites transmitted by infected tsetse flies. Encouragingly, the number of people diagnosed with the illness has fallen dramatically and, last year, Togo announced that it was the first African country to end sleeping sickness as a public health problem. This is hugely positive news because, if left untreated, sleeping sickness is almost always fatal. “The world cannot afford to be complacent,” warns Philippe Neau, Head of Neglected Tropical Diseases Program, Sanofi Global Health, “because it continues to be a health threat.”

those in remote areas where health infrastructure is either poor or nonexistent, have difficulty accessing any therapies which mainly need to be given in hospital. Where treatments are available, drugs are not always well-tolerated. One— given for rhodesiense infections — is derived from arsenic and is fatal in 5% of patients who receive it. “Neglected tropical diseases have been low on the list of international public health priorities,” admits Neau. “However, Sanofi is a key player in that field with more than 20 years partnering experience with the World Health Organization (WHO) to donate drugs and provide financial support for awareness, information and training programmes in the field.” Sanofi is committed to continue actively fighting against NTDs and elimination of sleeping sickness is a key objective of their new societal impact strategy.

Why treatments have been difficult to access There are two forms of the disease: Trypanosoma brucei gambiense, which accounts for more than 95% of reported cases and develops gradually; and Trypanosoma brucei rhodesiense, which accounts for 5% of cases and develops rapidly. There are two stages to the disease. “Common symptoms of stage one include fever, headaches and anaemia,” explains Neau. “In the second stage, parasites cross the blood-brain barrier to infect the central nervous system. If not treated, this is usually fatal.” Treatment depends on the type and stage of the disease; but

New therapies could be a game changer for disease control Thanks to this collaboration (which both parties extended in 2020 for a further five years) and sustained control efforts, the total number of sleeping sickness patients fell from 10,000 in 2009 to 663 cases last year. In close partnership with DNDi, (Drugs for Neglected Diseases initiative) Sanofi has developed innovative oral drugs allowing treating patients living in the most remote areas. The first 10 days all-oral treatment, fexinidazole, has been approved to cure both stages of the disease, eliminating the need for patients’ systematic hospitalisation. This treatment was registered in the Democratic Republic of Congo in 2018, which bears the majority of the sleeping sickness burden. Now a new once a day oral drug is in the pipeline which, if approved, Neau believes could be a treatment “game changer”. Elimination of sleeping sickness in 2030 is a target of the new WHO NTDs Roadmap. However, there are issues which may slow down elimination progress, says Neau. The next generation of diagnostic tools is urgently needed and essential funding required for tsetse fly control must not be thrown off course because of the COVID-19 pandemic. Recent breakthroughs, however, show what can be done when stakeholders pool their expertise. “There needs to be continued investment from all players — WHO, NGOs, pharma, countries, institutions, communities — to move towards the elimination of sleeping sickness,” says Neau. “We are in the last mile, but this is the most difficult part. Now everything depends on our will and energy to finish it. Together, #WeCanDoMore”

INTERVIEW WITH Philippe Neau Head of Neglected Tropical Diseases Program, Sanofi Global Health Unit, Sanofi WRITTEN BY Tony Greenway

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Why investment in NTD control can improve health and economic outcomes NTDs don’t just shatter lives. By stopping 1.7 billion people from reaching their full potential they also hinder economic growth.That’s why urgent investment in NTD control is needed.

he health impacts of neglected tropical diseases (NTDs) are both obvious and devastating. They can disable, disfigure and — if left untreated — even kill. Yet NTDs also have a less obvious — but no less devastating — economic impact: they discreetly rob people of their economic opportunity and prevent them from meeting their full potential. Those affected are more likely to have lower educational outcomes and earning ability. To change lives and improve economic productivity, more investment is needed in NTD control. Take a simple treatment such as deworming drugs, which are shown to increase educational outcomes in children and earning potential in adults. “Studies disclose that children who are dewormed are 25% more likely to attend school, and adults are able to increase their earnings by up to 20%,” notes Dr Kesete Admasu, CEO of Big Win Philanthropy and Former Minister of Health for Ethiopia. “Deworming also improves labour productivity and longterm economic gains.” How African citizens in the Diaspora can make a real difference Dr Kesete highlights findings from an EIU report which reveals that eliminating illness and death from bilharzia and intestinal worms in Ethiopia, Kenya, Rwanda and Zimbabwe by 2030 could boost GDP by US$5.1 billion . “In order for NTD elimination to become a reality, we need greater commitment from leaders in government, industry and all those who will benefit from the economic growth ending NTDs can create” he insists. Dr Kesete also calls on Africans living in the Diaspora to play their part by directly investing in NTD programming within their countries of origin. “Philanthropy by and for Africans is extremely important,” he stresses. “This is because African citizens in the Diaspora likely have insights and resources that are crucial to maximising any effort to reduce the burden caused by NTDs in African countries.” The END Fund provides a platform to fund partners that support critical programming across the continent. INTERVIEW WITH

Dr Kesete Admasu CEO, Big Win Philanthropy and Former Minister of Health for Ethiopia WRITTEN BY

Tony Greenway

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Fighting neglected tropical diseases to build human capital The fight against neglected tropical diseases (NTDs) has caused an overwhelming economic burden to many countries, which has stalled human capital development, but more is being done to tackle this.

R WRITTEN BY David Wilson Program Director, Health, Nutrition and Population, World Bank

ecognising the nexus between poverty and disease and the importance of reducing the disease burden to improve human development, the World Bank initiated their first health project in 1974. It was a disease control program for river blindness, one of the leading NTDs in the developing world. Since then, we have supported numerous programs to combat NTDs and reduce the impact on people and economies in Sub-Saharan Africa, Asia, Latin America and the Caribbean. NTDs cause disabilities that range from physical impairment to severe malnutrition and anaemia.

Better coordination across sectors will help developing countries to reach the Sustainable Development Goal 3.3 target to end epidemics of NTDs and other communicable diseases. Going beyond health Investing in people’s health and education significantly contributes to human capital development, which is why the World Bank launched its Human Capital Project in 2018. The potential synergy between the health, education and water, sanitation and hygiene (WASH) sectors is often undervalued and the returns on co-investments are rarely optimised. Therefore, to address the public health threats from NTDs, the Deworming

Africa Initiative supports cross-sectoral approaches in partnership with the World Food Programme, United Nations Educational, Scientific and Cultural Organization and the World Health Organization. Deworming as a key health service Through this initiative, we have helped reduce the endemicity of five NTDs by focusing on deworming the most vulnerable populations. Annual investments to combat NTDs in SubSaharan Africa from the International Development Association, the World Bank’s fund for the poorest countries, doubled from US$4 million to US$8 million between 2015 and 2019. A new way forward While the pandemic risks undermining recent advances, it also offers an opportunity to improve the sustainability, implementation and governance of programs against NTDs through innovative approaches. Better coordination across sectors will help developing countries to reach the Sustainable Development Goal 3.3 target to end epidemics of NTDs and other communicable diseases. The World Bank will continue to support developing countries as they fight these debilitating conditions and build up their resilience to external shocks that slow progress toward their health and human capital objectives.

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We need more funding commitments to advance NTD research and innovation — and we need it now.

Why failure to innovate in the field of NTDs is not an option More innovation is needed — and urgently — to create better tools and strategies to combat neglected tropical diseases. Otherwise more lives will be needlessly lost.

I INTERVIEW WITH Jamie Bay Nishi Director, Global Health Technologies Coalition

INTERVIEW WITH Dr Monique Wasunna Director, Drugs for Neglected Diseases initiative Africa

INTERVIEW WITH Dr Julie Jacobson President, American Society of Tropical Medicine and Hygiene WRITTEN BY Tony Greenway

t’s obvious that neglected tropical diseases (NTDs) cause unimaginable suffering to those who are affected by them — estimated to be over 1 billion people globally. What might be less obvious is that NTDs also create a particularly pernicious, vicious circle, notes Dr Julie Jacobson, President, American Society of Tropical Medicine and Hygiene. “The majority of NTD patients live in poverty,” she says. “Being sick keeps them in poverty because it takes away their ability to go to school or work. And if they become blind or disabled it places a huge burden on their families.” There’s a reason why they are known as neglected tropical diseases. For most NTDs, there are no vaccines, while for some existing treatments can be toxic, ineffective or too expensive. For example, the existing treatment in Eastern Africa for visceral leishmaniasis — a fatal parasitic disease — requires a 17-day hospital stay to receive painful twice daily injections; while existing treatments for mycetoma, a disabling disease of the skin and tissue, have only a 35% cure rate for the fungal form of the disease. It’s clear that more tools are urgently needed to combat these deadly yet preventable illnesses. Thinking differently to create the next generation of NTD tools “For example, we need more NTD diagnostic technologies, because the ones we have are limited,” says Jamie Bay Nishi, Director, Global Health Technologies Coalition. “That’s a real problem because before we can treat, we have to be able to diagnose. We also need tests to confirm NTD patients have been treated effectively.” It is, however, critical that diagnostics, vaccines and treatments are affordable, fit-for-purpose and tailored to the specific needs of NTD populations, including pregnant women, children and those living in remote areas. “We need to innovate around both products and delivery systems — to find out how best to get these tools to the people who need them,” warns Dr Jacobson. “That’s why we have to bring

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all stakeholders together — governments, industry, academia, NGOs and affected populations — to work out what needs to be done.” Dr Monique Wasunna — Director, Drugs for Neglected Diseases initiative (DNDi) Africa — agrees, stressing that multisector collaboration really does yield results. For instance, in 2018, through a public-private partnership, Sanofi, the Democratic Republic of Congo Ministry of Health, DNDi and local communities were able to introduce the first all-oral treatment for sleeping sickness. Crucially, this cures all stages of the disease in 10 days, replacing previous treatments that involved weeks of intravenous injections in hospital. A stark message for policymakers about urgent investment There are still major challenges to overcome, however. To begin with, non-COVID-related research has been knocked off course by the global pandemic. There is also a worry that cuts to international aid could jeopardise R&D progress, such as the recent decrease to the UK’s aid budget. “Any money redirected away from NTDs is going to have a negative impact on patients,” says Nishi. “Yet we know that eliminating NTDs doesn’t have to be a dream. Just look at what the world has accomplished with COVID-19 vaccines, thanks to targeted financial resources and technical expertise.” Dr Wasunna echoes this sentiment with a stark message for policymakers. “We need more funding commitments to advance NTD research and innovation — and we need it now,” she says. “Otherwise affected populations will remain trapped in a cycle of poverty. I would also remind governments that many NTD patients are children, so if we don’t make a concerted effort to innovate in this space then we are going to lose the next generation. The youth are our future — so please get involved. If not, we are potentially signing the death warrants of more than a billion people. We can’t do that. Failure is not an option.”

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Access is key to end the neglect for the one billion people that are affected by these preventable and treatable diseases.” ~Read more on page 12 from Peter Steinmann, Swiss Tropical and Public Health Institute

©Rama George-Alleyne / World Bank

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©Rama George-Alleyne / World Bank

As partnerships form, the sharing of knowledge and acquisition of funding can combine to strengthen community water and sanitation services, providing these essential services needed to prevent avoidable diseases.” ~Read more on page 14 from Lars Stordal, GWOPA (UN-Habitat)

Read more on the importance of access and innovation being key to beating NTDs in the 2nd half of this edition READ MORE AT GLOBALCAUSE.CO.UK

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Access and innovation: the keys to beating NTDs In the last decade, the world made great progress against neglected tropical diseases. We must continue to invest in access and innovation to end these diseases.

It is possible to end the “neglect” in NTDs A world without debilitating, disfiguring and even deadly neglected tropical diseases (NTDs) is within reach and eliminating them will save millions of lives.

eglected tropical diseases (NTDs) include several parasitic, viral and bacterial diseases that cause substantial and devastating illness, and economic challenges globally. Several of these diseases can be controlled or eliminated through existing, straightforward, communitylevel interventions, including mass drug administration of preventive medicines donated by pharmaceutical companies, or simple water filtration. The current need The warranted, expanded global focus on the control and elimination of NTDs has called for development and validation of surveillance strategies that are cost effective and can be integrated into existing programs. A core strength of CDC’s work is in the laboratory which provides a vital and unique service to states and countries to improve the diagnosis of diseases. As part of our focus on eliminating NTDs and the commitment to innovation, we developed a multiplex diagnostic tool to improve surveillance of NTDs, as well as vaccine-preventable diseases, like malaria and some waterborne and zoonotic infections. CDC work with partners to provide scientific leadership and input towards global NTD policy development. We also offer trainings and technical assistance to help strengthen global laboratory capacity and build a skilled international workforce capable of integrating new technologies into their own NTD elimination and other disease prevention and control efforts.

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Collaboration to tackle NTDs CDC has worked for decades with the U.S. Agency for International Development, other U.S. government partners, and outside of the U.S. with in-country partners, including ministries of health; and globally with non-governmental partners to eliminate NTDs. More than 40 countries have achieved the World Health Organization’s (WHO) elimination targets for at least one NTD by 2020. Millions of people no longer require treatment for lymphatic filariasis, trachoma or Guinea worm disease. We should celebrate the successes so far, but at the same time continue program scale up and advance scientific research that will inform the way forward. We are committed to reach WHO’s new global targets for eliminating NTDs in its recently launched Ending the Neglect to Attain the Sustainable Development Goals: A Roadmap for Neglected Tropical Diseases 2021– 2030. We are determined to maintain our progress in combatting NTDs and are making strides toward elimination. Public health never takes place in a vacuum. Together, we can shrink this global health equity gap and ensure healthier futures for millions of people.

WRITTEN BY Monica Parise, MD

CAPT U.S. Public Health Service, Director, Division of Parasitic Diseases and Malaria (DPDM), Center for Global Health (CGH), U.S. Centers for Disease Control and Prevention (CDC)

WRITTEN BY Dr. Katey Einterz Owen Director, Neglected Tropical Diseases, Bill & Melinda Gates Foundation

eglected tropical diseases (NTDs) are blinding, crippling diseases afflicting millions in the world’s most impoverished communities. In the last decade, the world has made tremendous progress in controlling and eliminating NTDs with 40 countries having eliminated at least one NTD. These gains have been enabled by billions of tablets of disease-preventing drugs that the pharmaceutical industry donates every year, helping low-income communities worldwide escape cycles of poverty caused by NTDs. Innovation to improve access to treatment Unfortunately, we’re not yet reaching everyone; about 65% of those who needed treatment for at least one NTD received it last year, those we are missing are often in some of the hardest places to reach. Luckily, partners have taken on the challenge to ensure these life-saving donations are delivered even in hard-to-reach areas. Last year, after a months-long pause due to the pandemic, mass drug administration campaigns resumed in Senegal and Mali. Here, the Reaching the Last Mile Fund supported treatment for 6 million people and training of over 6,000 community health workers in river blindness and lymphatic filariasis (LF) programs, made possible by drugs donations from MSD and GlaxoSmithKline. To map the burden of schistosomiasis and intestinal worms in Ethiopia—and improve drug delivery—The END Fund trained health workers to conduct surveys via mobile phones. In India, the Government and its partners moved all planning and coordination for deworming campaigns online, allowing the program to reach nearly 19 million children. Innovation through dynamic partnerships The Indian government is rolling out a groundbreaking approach to LF called triple-drug therapy. Unlike past treatments, this treatment kills the adult parasite that causes LF, making it more effective and potentially dramatically speeding up the timeline towards disease elimination. The three drugs used—ivermectin, diethylcarbamazine, and albendazole—are donated by MSD, Eisai and GlaxoSmithKline. In Africa, fexinidazole—the first oral treatment for sleeping sickness, developed by DNDi and donated by Sanofi—is significantly more effective and tolerable than the previous treatment. Being an oral treatment, it is also more accessible to people living in remote areas. We’re also better at reaching young children through new forms of deworming medicines. Recently, Merck KGaA developed a new paediatric formula to treat and prevent schistosomiasis and Johnson & Johnson created a chewable, better-tasting formulation to treat and prevent soiltransmitted helminths. Keep the momentum going These remarkable developments were made possible by joint efforts between endemic countries, pharmaceutical companies, donor governments, NGOs, the World Health Organization and private philanthropy. Investments from donor governments like the UK have been vital in creating programs that pave the way toward NTD elimination. However, these gains are in jeopardy due to the recent UK foreign aid cuts, which have resulted in millions of people being left behind. The exemplary partnership of pharmaceutical companies to develop and provide free medicines must continue to be matched by the public and philanthropic sectors to deliver these needed interventions. Many goals have already been met, but only by continuing to invest in these massively successful programs can we reach the endgame for these diseases and achieve a future free of NTDs. READ MORE AT GLOBALCAUSE.CO.UK

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The long-term vision of zero leprosy is threefold; zero transmission and disease; zero disability; zero stigma and discrimination.

Why we are in danger of forgetting the scourge of leprosy To achieve ‘zero leprosy’, the world must take a two-pronged approach. This means finding a way to break transmission of the disease while tackling the discrimination leprosy causes.

P INTERVIEW WITH Yohei Sasakawa World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination and Chairman, The Nippon Foundation WRITTEN BY Tony Greenway

eople affected by Hansen’s disease — otherwise known as leprosy — have two devastating issues to deal with. First is a chronic bacterial infection causing skin sores and nerve damage that can be both disfiguring and disabling; second is the emotional trauma of societal exclusion. The huge amount of ignorance and fear surrounding leprosy means that patients and their families are often victims of prejudice. “It is so important that correct information about the disease is widely available, and that the human rights of persons affected by leprosy are recognised and respected,” says Yohei Sasakawa, World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination. “I believe both a medical approach for treating the disease and a social approach for tackling discrimination are essential. I liken these approaches to the two wheels of a motorcycle. Both have to turn at the same time if we want to make progress against leprosy.” Sasakawa has been committed to fighting leprosy for more than 40 years. His persistence led to a UN General Assembly resolution in December 2010 on elimination of discrimination against persons affected by leprosy and their family members, which was unanimously endorsed by 192 countries. The Nippon Foundation — of which Sasakawa is Chairman — and Sasakawa Health Foundation have made significant contributions to strengthening measures against the disease in endemic countries. As Goodwill Ambassador, Sasakawa travels the world, meeting people affected by leprosy and speaking with government officials about the actions needed on the ground. Barriers to achieving ‘zero leprosy’ While leprosy was eliminated as a public health problem at the global level by 2000, around 200,000 new cases are still reported each year, and hotspots of the disease remain in areas where access to health services is difficult. That’s why individuals and

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organisations involved in fighting Hansen’s disease are now urging the goal of “zero leprosy” (adopted by the WHO’s Global Leprosy Strategy 2021-2030 ‘Towards Zero Leprosy’). The long-term vision of zero leprosy is threefold; zero transmission and disease; zero disability; zero stigma and discrimination. There are, however, various barriers to achieving this aim. There is waning political commitment, ironically due to the successes that have so far been achieved. “Efforts to date have significantly reduced the number of new cases,” says Sasakawa. “As a consequence, the disease has slipped down the list of health priorities in most countries.” Leprosy amid the COVID pandemic There is a shortage of expertise in leprosy because of the loss of political commitment and insufficient funding. Awareness-raising activities have yet to fully change community attitudes toward leprosy, so stigma and discrimination persists in even medical institutions. This can lead to delays in diagnosis that increase the risk of disability. Sasakawa warns that “budgets and personnel have been reallocated to deal with COVID”, with a nearly 40% drop in new cases in 2020 showing the extent to which services have been disrupted. “Given the fact that the disease can leave someone with lifelong disabilities, and considering their human rights, leprosy is an issue that cannot be ignored and must be addressed by the whole of society,” insists Sasakawa. Therefore, the Sasakawa Leprosy (Hansen’s Disease) Initiative — a strategic alliance of Yohei Sasakawa, Sasakawa Health Foundation and The Nippon Foundation — has created a Don’t Forget Leprosy campaign, reminding the world that leprosy should not be side-lined amid the COVID-19 pandemic. The campaign runs until May 2022, features webinars and messaging on TV, radio and social media, and marks the 20th anniversary of Sasakawa’s appointment as a leprosy elimination ambassador.

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Allowing children to learn and adults to earn: why NTD elimination matters Integrating neglected tropical diseases (NTDs) into universal health coverage could be the best way for governments to meet the World Health Organization’s (WHO) goal of eliminating five key NTDs by 2030. ia 2

Focussing on NTD progress Although the WHO goal has not yet been achieved, many countries are making progress. In 2000, Haiti was found to be endemic nationwide for LF, while today only 18 of 140 districts require drug treatment. “Countries are doing a lot for NTD elimination; governments are committed and understand their impact,” says Direny. “Complementary interventions are necessary to sustain these gains and NTDs should be integrated into the health system, not treated as a separate entity.” Direny states, “It’s not something we’re going to achieve tomorrow, or next week. But we have identified the gap and understand the means to overcome it.” IMA World Health has helped countries including Haiti, South Sudan and DRC make significant steps towards NTD elimination through mass drug administration and treatments including over 7,000 eye surgeries. In Tanzania, the organisation has ensured more than 21 million people no longer require medicine for LF and more than 16 million do not need medicine for trachoma, as well as training 180,000 local government officials, health workers, teachers, and community drug distributors to administer medication. Direny believes the 2030 goal is entirely achievable. INTERVIEW WITH

Dr Abdel Direny Senior Technical Director, Neglected Tropical Diseases, IMA World Health WRITTEN BY

Meredith Jones Russell

Paid for by IMA World Health Find out more at imaworldhealth.org/ 12

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eglected tropical diseases (NTDs), including lymphatic filariasis (LF), schistosomiasis and trachoma, affect more than a billion people across 70 developing countries, with children as the most vulnerable. The diseases kill or disable millions of people every year. Treatment requires both medicinal and non-medicinal interventions. Dr Abdel Direny, Senior Technical Director of Neglected Tropical Diseases at IMA World Health, explains: “Countries that have been successful in reducing NTDs transmission have done the key thing, which is providing medicine to the eligible population. But that is just attacking the source of infection, the worms themselves and not the reason the worms are in the country. “NTDs are linked to poverty. To eliminate them, we must improve living conditions, including water, sanitation and hygiene. Medicines by themselves are not enough.”

Using innovative new tools to advance progress in NTDs Great strides have been made in the fight against neglected tropical diseases over the past 20 years, but the global burden is still considerable. In order to end the neglect, novel tools and innovative approaches are needed.

nnovation has enabled unprecedented progress in the fight against neglected tropical diseases (NTDs). There has also been a fundamental shift from the traditional approach of treating individual patients to a public health perspective, most notably mass drug administration campaigns, which has led to hundreds of millions of people being treated for NTDs each year. Such efforts have resulted in the elimination of several NTDs such as elephantiasis, river blindness and trachoma from multiple countries in Africa, Latin America and Asia. Novel tools to combat NTDs These advancements have been possible due to the availability of safe and efficacious drugs, global alliances, reliable funding and a renewed focus on partnership. The collective efforts have resulted in the discovery and development of new diagnostics, drugs and preventive approaches for treating NTDs. Scientists and public health specialists at the Swiss Tropical and Public Health Institute (Swiss TPH) and their network of partners have contributed to some of these novel tools to combatting NTDs, including a new paediatric medication derived from praziquantel to treat schistosomiasis within an international consortium, and the drug fexinidazole that was developed against sleeping sickness in partnership with the Drugs for Neglected Disease initiative (DNDi). Combined with new, point-of-care rapid diagnostic tests, the elimination of sleeping sickness is now within reach.

The potential of novel tools and innovative approaches to combat NTDs can only come to fruition once they are accessible to those most in need. Making novel tools accessible The potential of novel tools and innovative approaches to combat NTDs can only come to fruition once they are accessible to those most in need. This is when implementation research come into play, which is the process of introducing a tool into a real-world context. This spans from acceptability by health workers and the local population, to ensuring sustainable funding that makes the tools available, namely in remote and low-resource settings that are characterised by poverty, illiteracy and a lack of basic infrastructure. In order to realise the potential of new tools and strategies, the time until a drug, diagnostic or intervention reaches the most vulnerable populations must be shortened. One way to do this is through implementation research, which should go hand-inhand with the development of novel tools. Access is key to end the neglect for the one billion people that are affected by these preventable and treatable diseases. WRITTEN BY Peter Steinmann, Epidemiologist and Public Health Specialist, Swiss Tropical and Public Health Institute (Swiss TPH)

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How an equal partnership can lead to big breakthroughs in NTDs research

Paid for by NTD Network

By building an equal partnership of international scientists, new treatments and diagnostics may be found for leishmaniasis and Chagas disease.

L INTERVIEW WITH Professor Paul Denny Director, Centre for Global Infectious Diseases at Durham University and Director, NTD Network WRITTEN BY Tony Greenway

ike many NTDs, leishmaniasis and Chagas disease — two lethal illnesses caused by parasites —affect the world’s poorest communities. These underreported infections lack effective diagnostics and patient-friendly drugs, says Professor Paul Denny, Director of the Centre for Global Infectious Diseases at Durham University. Yet, if our global scientific community can tackle these challenges in equal partnerships, the potential breakthroughs could change the lives of millions of people. The operative word here is ‘equal’, stresses Professor Denny, who also leads ‘A Global Network for Neglected Tropical Diseases’, known as the NTD Network; an international academic consortium whose mission is to help identify new treatments that target these parasites without harming patients. “We have no interest in being ‘top down’,” he says. “We are an egalitarian community that can help fund and develop the work of scientists in affected countries. By combining this research excellence, we can find new ways to deal with these diseases.” Building bridges and research potential Professor Denny believes that these new global collaborations haven’t just facilitated innovation; it’s also significantly contributed to worldwide trust and cooperation. “It builds international bridges,” he says. “It’s a way to reveal potential, and better understand and address

Our ongoing challenge Leishmaniasis occurs as a visceral disease (lethal if untreated, and current medicines - such as pentavalent antimonials - make many patients too ill to work); as cutaneous leishmaniasis (the most common form, often treated by injection into the painful skin sores); and as mucocutaneous sores attacking mucosal membranes. Scarring from these infections often destroys lives through social stigma. Chagas disease is curable if treated early (within six weeks), although approximately one third of patients retain an asymptomatic, persistent chronic infection causing lifethreatening damage to the heart and digestive system. With cuts to budgets, and with the healthcare sector consumed by the global pandemic, Professor Denny is concerned about the future research into these diseases. “Investment in the next generation of early career researchers is vital to carry through NTD solutions to a successful conclusion for our shared global health security.”

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Human scabies is an invisible disease in more ways than one. More funds are needed to further work in tackling this often unrecognised scourge.

H INTERVIEW WITH Professor Andrew Steer Director, The World Scabies Program, Murdoch Children’s Research Institute

WRITTEN BY Linda Whitney

uman scabies may be invisible to the naked eye, but it affects millions worldwide. “The scabies mite burrows into the skin, causing intense itching that keeps people awake at night, can stop children going to school and adults going to work. It can also lead to serious complications,” says Professor Andrew Steer, Programme Director of the World Scabies Program (WSP). It affects over 200 million people at any time globally, especially poor and socially disadvantaged communities in tropical climates, such as the favelas of South America and poor communities in Africa. Vulnerable people, children, the elderly and homeless are particularly at risk.

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Find out more at ntd-network.org

Partners needed to help beat scabies

the problems we all want to solve.” This is vital; the unusual physiology of leishmaniasis and Chagas disease means that researchers need to deploy specialist laboratory techniques and novel approaches - hence the NTD Network’s teams include parasitologists, biochemists, chemists, biologists and immunologists.

“It is a disease of poverty that keeps communities in poverty,” says Professor Steer. Complications caused The scratching caused by itching can result in skin infections like impetigo. This can lead to chronic kidney disease, rheumatic heart conditions and infection that enters the bloodstream to cause sepsis. “Our research in Fiji and Solomon Islands shows that up to a quarter of people, and nearly half of five- to nine-year-olds, had scabies at any one time and that complications such as bacterial skin infections were more common than elsewhere,” says Professor Steer.

Tackling the problem WSP says that the solution in highly endemic areas should be community wide treatment via public health systems with oral ivermectin, a safe and effective anti-parasitic medicine. “Our research shows ivermectin could reduce the incidence of scabies by 90% after just one treatment,” says Professor Steer. It’s not currently licensed for use in under-fives and pregnant women, but WSP is suggesting the use of topical permethrin for these groups. Partnerships and funding needed WSP now wants to expand the programme elsewhere, in line with the WHO’s Neglected Tropical Disease Roadmap 2030, that includes targets for scabies control. Sarah Andersson, WSP Program Manager, says: “To do so, we need strong partnerships with countries with a high prevalence (over 10%) of scabies that are willing to include scabies in their universal healthcare packages and to take the mass drug administration approach.” Professor Steer adds: “The initial national demonstration projects, with the co-operation of the ministries of health in Fiji and Solomon Islands, have been funded by Macquarie Group. We’re also looking for new partners to expand the mass drug administration programmes, monitoring and evaluation to other countries and regions.”

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The World Health Organization has found that handwashing is one of the most effective actions that can be taken to reduce the spread of pathogens and prevent infections.

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Solidarity in WASH as a tool for reducing the spread of NTDs

Globally, millions of people suffer from neglected tropical diseases (NTDs), many of which are often found in places with unsafe drinking water, poor sanitation and insufficient hygiene practices.

n recent decades, substantial progress has been made in increasing access to clean drinking water and sanitation. However, billions of people still lack these basic services. One in three people do not have access to safe drinking water and more than 673 million people still practice open defecation.

WRITTEN BY Lars Stordal Programme Management Officer, GWOPA (UN-Habitat)

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The link between water, sanitation and health The World Health Organization has found that handwashing is one of the most effective actions that can be taken to reduce the spread of pathogens and prevent infections, yet two out of five people do not have a basic handwashing facility with soap and water. These issues are among those that Sustainable Development Goal (SDG) Six includes in its eight targets, with the aim of ensuring “clean water and sanitation for all”. Most utilities in developing countries suffer from several institutional weaknesses, including inadequate cost recovery through revenue, little to no funding for dilapidated infrastructure, limited service area coverage, insufficient training available to staff and poor customer relations, among others. Fostering collaboration between water supply and sanitation utilities is a vital element in ensuring an exchange of experiences and know-how between peer utilities at varying levels of performance. This can be done by bringing together a diversity of factors such as utilities, utility associations, financial institutions and research and expert organisations in a not-for-profit environment. This is key to not only promoting peer-to-peer learning for the betterment of destitute communities, but also for creating a sense of solidarity. As partnerships form, the sharing of knowledge and

acquisition of funding can combine to strengthen community water and sanitation services, providing these essential services needed to prevent avoidable diseases.

One in three people do not have access to safe drinking water and more than 673 million people still practice open defecation. Networking for peer-to-peer support Since 2009, the Global Water Operators’ Partnerships Alliance (GWOPA), an initiative hosted by the UN Human Settlements Programme (UN-Habitat), has developed a network of utilities and their partners committed to peer-to-peer support. Water and sanitation service providers, connected through GWOPA’s extensive network, are sharing and helping one another improve services every day through not-for-profit partnership. This year, GWOPA will hold its 4th Global WOPs Congress—a global gathering of hundreds of public utilities and their partners (donors, NGOs, regulators, government, etc.). Every one of us has both something to learn and something to share with water and sanitation utility staff. We hope to see everyone from across the world of water and beyond this October at this free and fully online event because by learning from each other, we can be better prepared for future challenges ahead.

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Why we think chronic skin related NTDs are linked to human rights issues To combat skin related NTDs, an integrated approach is needed which recognises their relationship to human rights.

N INTERVIEW WITH Iñigo Lasa General Manager, Anesvad Foundation WRITTEN BY Tony Greenway

eglected tropical diseases (NTDs) cause huge economic, social and physical burden. Leprosy, yaws, Buruli ulcer and lymphatic filariasis are chronic skin related NTDs mostly found in isolated rural communities in sub-Saharan Africa, resulting in immense suffering. However, they are all preventable and, with early diagnosis and treatment, curable. Leprosy, yaws and Buruli ulcer are caused by bacterial infection and can lead to permanent disfigurement and disabilities. Lymphatic filariasis is caused by parasites transmitted by mosquitoes and can lead to abnormal swelling of body parts, pain, disability and social stigma. Iñigo Lasa is General Manager of Anesvad Foundation, a non-governmental organisation based in Spain, which is dedicated to controlling, eliminating and eradicating these four diseases and others like them. He believes that the new World Health Organization’s NTD Roadmap is an important step in the fight against NTDs. “It presents clear guidelines for those of us working in the field of NTDs,” he says. “It also highlights the challenges we face with regards to reaching people in remote areas and detecting and identifying diseases.”

An integrated approach to a human rights problem Everyone should be entitled to good health; yet, as Lasa notes, skin diseases “feed the cycle of poverty, which are both its cause and consequence, and which make the struggle against inequality insurmountable.” The way we think about them must change. After all, says Lasa, over the last two decades other issues like the environment and mental health have been viewed through the prism of human rights. “But neglected tropical diseases?” he says. “Not so much. We think it’s time to take a wider view.” To tackle skin NTDs, a coordinated approach is necessary between different actors. “Ministries of health, the World Health Organization, international organisations and civil society need to work together,” says Lasa. “Civil society’s role is important because local organisations often have a different picture of what is going on at community level adding to national governments point of view.” Nonhealthcare actors also need to get involved, including those working in education, nutrition, water and sanitation. Finally, country ownership is critical. “Governments and healthcare ministries must make these diseases a financial and logistical priority, in the way they have with other healthcare issues,” stresses Lasa. “Because, right now, they have not.”

Working together to gain greater insight – and develop better solutions for NTDs

illustrator are developing the first medical illustrations of the disease, to help health-workers spot infections earlier.

NTD researchers should take an interdisciplinary approach. Bringing together a broad coalition of expertise results in greater insight — and better outcomes.

T INTERVIEW WITH Dr Martha Betson, Senior Lecturer in Veterinary Parasitology, University of Surrey

WRITTEN BY Tony Greenway

he global challenges posed by neglected tropical diseases (NTDs) are vast and complex. That’s why research should be carried out in an interdisciplinary and collaborative way, says Dr Martha Betson, Senior Lecturer in Veterinary Parasitology at University of Surrey, an institution studying bacterial, viral and parasitic NTDs. A coalition of cross-sectorial expertise can lead to greater insight and, ultimately, better solutions. Dr Betson and her team are working on a Philippines-based initiative investigating the role that animals play in spread of intestinal worm infections to humans. “The project involves experts in parasite biology, human medicine, animal

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medicine, mathematical modelling and economics,” she explains. “We believe it’s vital to address problems in this interdisciplinary way, because simply understanding the biology of the infectious agent doesn’t give us the whole picture of the disease, or how human factors can influence infection spread.” This interdisciplinary approach is adopted consistently by Surrey NTD researchers. Dr Joaquin Prada’s work with the NTD Modelling Consortium and World Health Organization to assess and respond to the impact of COVID on NTD control programmes is underpinned by mathematics. Dr Rachel Simmonds and her group focus on Buruli ulcer, a chronic stigmatising skin infection. She and a medical

Fostering a culture that encourages collaboration By engaging with partners in NTD endemic countries, researchers gain a better understanding of the local situation and factors that can affect disease control. “Partners in these countries can offer real insight into the stigma surrounding NTDs, or how well communities will accept particular interventions,” says Dr Betson. “They can also engage with key players in local communities to explain the research that is undertaken.” Local engagement means it is possible to deliver research results to those that need them most, such as the presentation of Dr Dan Horton’s rabies work at the Middle East Rabies Control network directly to those dealing with rabies every day. Dr Betson believes that academic institutions should foster a culture that actively encourages cross-faculty collaboration and partnerships with external organisations. She recommends the ‘one health, one medicine’ vision advocated by University of Surrey. “This recognises the linkage between human health, animal health, plants and the environment,” she says. “It is fundamental to much of the research we do.”

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Find out more at surrey.ac.uk/ NeglectedTropical Diseases

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