Meet the woman whose study of insects helps prevent Neglected Tropical Diseases

Africa is on the brink of achieving a major victory over deadly diseases that have plagued its population for generations. With increased access to medical care, improved healthcare infrastructure, and a renewed focus on disease eradication, the continent is closer than ever to rid itself of illnesses that have taken a devastating toll on its people.

Beninois entomologist Pelagie Boko-Collins believes that preventative action should always be the first course of approach. She places proactive measures at the highest priority, emphasising that prevention is better than cure.

“Most people think about treatment, but because I’m an entomologist, I think about prevention,” she said.

Boko-Collins is dedicating her career to entomology, the study of insects, with a special focus on disease vectors. During her first eight years working at a research centre, her main area of focus was on malaria vector control. She observed that many neglected tropical diseases transmitted by vector-borne transmission were not being adequately addressed. She was determined to make a difference and work to prevent the spread of these illnesses. This led her to conduct further research on these NTDs in order to inform vector control strategies for their prevention.

“I was like, why are we just not working in other disease transmissions? Why it is just malaria vector control? We should be able to do more.”

Neglected tropical diseases, also known as NTDs, are a set of 20 illnesses or disease groups that are mainly found in tropical and subtropical regions. They are caused by a variety of pathogens including viruses, bacteria, parasites, fungi, and toxins.

These include lymphatic filariasis (also known as elephantiasis), onchocerciasis (or river blindness), schistosomiasis (or bilharzia), and human African trypanosomiasis (often referred to as sleeping sickness). Most of these diseases are spread by vectors such as mosquitoes, sandflies, and snails. NTDs can lead to severe disability, disfigurement, and even death. They have long been overlooked and ignored by the global health community, leading to a lack of resources and research to treat and prevent them. However, in recent years, there has been an increasing global effort to combat NTDs and provide access to treatment to those affected. More than a billion people are affected by neglected tropical diseases globally. Africa accounts for nearly 40% (400 million people) of the global burden.

Boko-Collins realised the importance of furthering her studies to investigate NTDs, beyond just malaria. Through her research, she uncovered a wealth of illnesses that were being neglected, such as lymphatic filariasis and onchocerciasis, both of which had devastating effects on individuals and communities and also posed a huge risk to public health.

“Despite efforts to eliminate trachoma successfully, there remains a pressing need to address the management of morbidity in neglected tropical diseases like lymphatic filariasis, particularly in areas with limited resources and support, to alleviate the burden on affected individuals and communities,” she said.

Lymphatic filariasis and onchocerciasis are among the most prevalent and persistent diseases. They’re responsible for disabling millions of people and causing untold suffering, particularly in the poorest countries, with an estimated 1.5 billion people living in poverty, according to World Health Organization (WHO).

Untreated cases of lymphatic filariasis can lead to debilitating symptoms such as swollen breasts or legs, predominantly affecting women, and surgical interventions have been provided to address the condition. However, lack of support and diagnostic challenges have hindered progress in providing comprehensive care, leaving many patients suffering from advanced stages of the disease. Onchocerciasis can cause severe itching, skin lesions, and, in some cases, blindness if left untreated. Morbidity management programs and vector control efforts have been implemented to combat the disease in affected regions.

Boko-Collins said that onchocerciasis disease even does more damage than just malaria when you put all those neglected tropical diseases together. “The reality is … a lack of prominent research on neglected tropical diseases, specifically in the area of vector-borne diseases. People need to be informed about preventive measures rather than solely focusing on treatment and waiting for annual treatments.”

Benin successfully eradicated trachoma

Boko-Collins made it her mission to help eradicate trachoma when the program was initiated and launched in 2013. In order to do this, she worked to map out and identify communities that required intervention. Through her efforts, she was able to help those who were affected by this disease and work towards providing them with the necessary resources to reduce its prevalence.

Trachoma is a bacterial infection of the eye that is a major cause of infectious blindness worldwide. It is mainly transmitted from one person to another, particularly between children and their mothers. This is particularly common in places with crowded living conditions, limited access to water, lack of proper sanitation such as shared clothes and towels, and the presence of flies. These factors create an ideal environment for the disease to spread. Repeated cases of infection in the eyes can lead to trichiasis. If left untreated, trichiasis can result in vision loss or permanent blindness. Blindness from trachoma is irreversible. Hence, prevention measures such as improved hygiene and regular screening are essential for curbing the spread of the disease.

We have achieved a significant milestone in Benin, as it has taken us approximately 10 years from the initial mapping phase to the present moment of disease elimination,” she proudly said. “It’s not frequent to see the beginning and the end of such fights within ten years.”

“I have actively supported the country throughout this journey, ensuring that our approach leaves no one behind,” she said. “When we go into the community where the disease is endemic, our primary objective is to ensure that every patient requiring surgery to preserve their eyesight receives the necessary treatment. We reach out to them and offer them the treatment they deserve and which will save their sight.”

Boko-Collins stressed the necessity of handwashing and keeping clean surroundings in order to prevent the spread of disease. “Our goal is to educate the community and encourage behavior that safeguards against the transmission of trachoma,” she said. “We sensitize the community and work with the mayor’s office to build more wells, ensuring access to clean water and promoting hygiene standards in schools, so that children are protected from disease transmission.”

The World Health Organization estimates that over one million people are visually impaired due to trachoma. Unfortunately, the burden of trachoma-related blindness is particularly high among women than men, making it a critical gender-related public health issue. In a Trachoma and NTD’s Brief released by Sightsavers in 2020, it was revealed that the risk of blindness due to trachoma is nearly twice as high for women compared to men. This is primarily because women often serve as the primary caregivers to children in the household, leading to increased exposure.

“When we go into the field, it’s remarkable to witness the impact, especially on women above 50 who bear the weight of responsibility for their entire community, including grandchildren and children. Many of these women have struggled to provide for their families, which becomes a tremendous burden. They endure not only the pain and suffering of their illness but also the loss of independence, relying on their families for support. This creates a ripple effect within the community, where they transition from being caregivers to being dependent. However, after undergoing surgery, the transformation is astounding. The joy that radiates from their faces is more rewarding than any other recognition. Witnessing their ability to resume daily activities, regain independence, and become a pillar of support rather than a burden on the community is truly inspiring,” she said.

Challenges

In the field, Boko-Collins face the main challenge of educating the community about the preventability of the disease. Many of the community members tend to be uninformed and believe that any type of illness is inevitable. Through outreach, education, and awareness, Boko-Collins is seeking to demonstrate to the public that the disease is in fact preventable and that steps can be taken to protect themselves and their families.

“We invest time in explaining the importance of practices like waste management to prevent disease transmission by flies… We have to take our time to explain and demonstrate to them the importance of prevention, even after surgery.”

The second challenge Boko-Collins encounters in the community is the deep-rooted faith in traditional healers as the go-to source for any type of illness. Rather than seeking medical attention at the hospital, people would first turn to these healers to solve their health issues. As a result, many will be delaying the medical care they need in order to properly address their ailments.

“It is crucial to sensitize the members of the community so that they understand the appropriate course of action when patients seek treatment. By educating them, they will know where to direct individuals for proper treatment, whether it be through medication or, in advanced cases, surgical intervention,” she said.

She added that they “collaborate with local leaders and healers to raise awareness of the importance of treatment within the community. Having respected figures in the community publicly support the treatment has a huge impact on how it is viewed and accepted by those around them. This increased acceptance can help to encourage more people to access the necessary care.”

“Having influential figures endorse the treatment significantly increases community acceptance,” she said.

However, this male-dominated field continues to be a harsh environment for women. Many female professionals in this sector, Boko-Collins included, experience the discrimination and exclusion that has hindered women’s progress in other industries. This is a challenging reality that all women in the NTDs sector must confront and strive to overcome.

“It’s a constant struggle for women working in this field to be accepted as everybody says that this job is for men,” she said. “We have to fight gender bias which has been there for a long time and make sure and prove yourself, make sure everybody knows you can also do the same thing as the man in the lab.”

Despite these challenges, women like Boko-Collins remain determined to overcome them and make a lasting impact on the NTDs sector.

Great strides worthy of celebrating

The success of Benin in eliminating trachoma serves as an inspiration to other countries.

In May 2023, WHO declared that Benin and Mali have successfully eliminated trachoma, a major infectious cause of blindness, as a public health concern. This achievement makes them the fifth and sixth countries in the WHO African region to defeat this eye infection. Prior to Benin and Mali, Ghana (June 2018), Gambia (April 2021), Togo (May 2022), and Malawi (September 2022) had already received WHO validation for successfully eliminating trachoma in the African region.

Africa has made great strides toward eliminating once-killer diseases. According to WHO, 47 African countries have successfully eliminated at least one NTD as a public health concern. Togo achieved a remarkable feat by becoming the first country to eliminate four NTDs namely Guinea-worm disease, elephantiasis, sleeping sickness, and trachoma. The Democratic Republic of the Congo achieved the elimination of Guinea-worm disease. These milestones highlight the ongoing efforts to combat NTDs in Africa and signify important victories in improving public health in the region, WHO reported.

Although significant progress has been made in the fight against NTDs, there remain many challenges to overcome before they can be fully eliminated. These include a lack of appropriate diagnostic tools and treatments, an inability to properly integrate NTDs into national health systems, irregular and insufficient funding, and the issue of the Covid-19 pandemic placing more strain on already fragile healthcare systems. It is vital that these challenges are addressed if the world is to make any real progress in the global fight against NTDs.

Boko-Collins added that “every country needs to have the belief that this type of elimination is feasible and achievable. This belief should be the first step, shifting the focus from treatment to elimination.”

“Gathering evidence early on and implementing projects in the field is relatively straightforward, but ensuring proper data collection and documentation becomes a challenge. It is important to maintain program coordination and meticulously record evidence of the work done, such as treating individuals and providing surgeries. However, obtaining and documenting this evidence can be difficult. This is where countries need to prioritize elimination efforts from the outset, rather than waiting until fieldwork is completed before addressing elimination as a separate activity. This phase can prove to be particularly challenging.”

Boko-Collins pointed out the role of the Accelerate trachoma elimination programme in Benin which made a tremendous impact on the nation. This program enabled Benin to make significant strides in fighting this disease, leading to remarkable progress in improving the health and well-being of its people. Benin was the first country to be supported by Accelerate but the program aims to eliminate the disease in 14 African countries. This remarkable achievement serves as a beacon of hope for other countries facing the same problem.

“Many African countries, including Benin and Togo where I’ve worked, face a major challenge in achieving elimination goals,” said Boko-Collins. “Take blindness, for example. We started treatment several decades ago, but we are still far from achieving elimination.”

“Our goal now is 2030, which requires improved communication with the community. The approach should focus on prevention as well as ensuring that no one is left behind. In our program, we emphasized the importance of comprehensive coverage during implementation, regardless of external factors. However, we often fail to reach out to certain communities, creating conflicts.”

She said that it is important for countries to raise awareness about prevention and address any resistance to treatment. She added that “fortunately, trachoma has made progress toward elimination due to a comprehensive approach and donor support. However, diseases like Lymphatic Filariasis and river blindness still require more time due to a lack of support. We must focus on supporting countries to reach elimination for other diseases as well.”

Boko-Collins hopes to celebrate the successful elimination of Lymphatic Filariasis in Benin within the next three years. She says this has been a long-standing effort in the country, and the goal was to achieve elimination before trachoma. In order to make this a reality, she urges global leaders, governments, NGOs, and the entire community supporting NTDS to unite and contribute to the different components required for achieving elimination, as they have done with trachoma.

“It requires collective support from all of us to assist different countries in their efforts to combat these diseases. The roadmaps have been established, providing a clear path forward,” she added.