By Clifford Akumu

For medical researcher Dr. Borna Nyaoke-Anoke, a childhood experience in hospitals, and interactions with doctors, has blossomed into a lifelong passion.

She has been a fountainhead of empowerment, a star clinical researcher, and Head of the Mycetoma disease program at Drugs for Neglected Diseases Initiative, a not-for-profit research organization developing new treatments for neglected patients.

Dr. Nyaoke-Anoke has dedicated her time to mentoring young girls and early-career-scientists through the HEMA Foundation-an organization she founded together with other medical researchers to empower young people and avail opportunities including internships, scholarships in Science, Technology, Engineering, and Maths(STEM) careers.

She says societal and cultural expectations stifle women’s ascendancy in STEM careers.

The STEM gaps and challenges can only be addressed by solutions that empower women. Through investing in women, we can spark change and speed the transitions towards a healthier, safer, and more equal world for all, she adds.

“Africans always have the assumption or cultural myths that there are things that women can do or those that men can do better. STEM field is always deemed harder in terms of time and effort for women especially on balancing their career and marriage,” she reflects on her remarkable journey as a star researcher on neglected diseases.

Through the HEMA Foundation, they are encouraging young girls to venture into science-based careers noting, that empowering women and girls in science leadership roles is a driver to sustainable development.

Dr Nyaoke-Anoke grew up in an environment where education wasn’t an option- having been raised in the coastal city of Mombasa, Kenya to a home of educationists(the mother was a lecturer at Pwani University and father in the literature space).

Her interest in medicine was sparked right from childhood because she spent most of her time in the hospital.

“I was a very sickly child. I spent quite a lot of my childhood in hospitals and it became a matter of trying to understand what exactly I was going through,” recalls Dr Nyaoke adding that she always wanted to become a cardiologist.

“We were always on a discovery journey together with my doctor about my condition. And that prompted my curiosity within the medical field, I wanted to understand the disease that I had, how it started, and how we can prevent it from spreading and ultimately find the best treatment for it.”

After completing a Bachelor’s Degree in Surgery and Medicine from the University of Nairobi in 2011, she worked at Kenyatta National Hospital before joining the Nairobi Hospital.

Later in 2015, she joined the University of Nairobi’s Kenya Aids Vaccines Initiative (KAVI)-Institute of Clinical Research (ICR) where she conducted vaccine research and development in HIV/AIDS and Ebola diseases.

During the same period, there were several research studies conducted in Kenya regarding HIV/AIDS. Some of the key areas of focus included prevention strategies, treatment options, and the impact of the disease on different populations.

Her stint at KAVI-ICR also coincided with a wave of misinformation and allegations that research institutions were using the Kenyan population as guinea pigs in HIV trials.

“We had to fight these allegations. We carried lots of education and awareness sessions both in the media and within the local communities,” she says.

Her work at KAVI shaped her trajectory of practice from clinical research to looking at other non-clinical medical aspects. She would immerse herself in the world of research and development.

“At that time we did not have clinical courses in Kenya and within the region, so I worked on a clinical certificate from Harvard University which gave me a better idea of how to conduct clinical trials because it’s not something you are taught in a medical school,” she tells Science Africa during an interview to mark the 2024 International Women’s Day.

The day is celebrated on 8th March to mark women’s social, economic, cultural, and political achievements. This year’s theme is investing in Women: Accelerate Progress.

In 2018, she joined the Drugs for Neglected Diseases Initiative (DnDi) not-for-profit research organisation developing new treatments for neglected patients to expand her work in research and development.

“Since drug development deals with sick patients, it was a great experience for me in terms of expanding my knowledge within this research and development,” she notes. “Looking at neglected tropical diseases -that did not have quite a lot behind it then compared to HIV/AIDS and Ebola, I felt it was a good path for my career to delve into.”

Head of Mycetoma Disease, Borna Nyaoke examining patients at SN Medical College, Jodhpur in India. Copyright, Purushottam Diwakar-DNDi. Copyright, DNDi

As the Head of Mycetoma disease, she has her work cut out. She has led the world’s first clinical trial in Sudan to discover improved treatments for Mycetoma.

Mycetoma is a neglected tropical disease that is a chronic slow-growing infection that comes in either bacterial (actinomycetoma) or fungal (eumycetoma) form and is contracted through thorn pricks while walking barefoot. It is endemic in several regions across Africa, Asia, and the Americas.

Until the Sudan-based Mycetoma Research Centre (MRC) approached DNDi, Dr Nyaoke was a senior clinical project manager coordinating several clinical trials within the organization.

The initial work started at the MRC in Khartoum with advocacy to include Mycetoma in the NTD’s list by the World Health Organization (WHO) in 2016. By 2017, the team (DNDi, MRC, and Eisai Limited) had started implementing a randomised clinical trial for fosravuconazole- a new antifungal treatment for Mycetoma.

“I had no experience working in Sudan and my impression of the country was just what I’d seen on TV. But I was met with resilient people, and practising their culture of welcoming visitors amid turmoil and pain. These were people whose legs were swollen and wrapped in pain but they didn’t want you to see their legs until you have eaten!” she narrates of her first visit to Sudan to access Mycetoma cases.

Working in far-flung and war-torn Sudan states as a clinical research scientist hasn’t been easy. She remembers the 2019 political upheavals that brought Khartoum to a standstill and how it impacted the Mycetoma research and control work.

“The protests that broke out in the Sudanese town of Atbara quickly swept across the country leading to the closure of all the airports. We could not move out of Khartoum, I kept thinking about my young children..and family. With no internet connection, communication was a problem, and I kept wondering if I was ever going back home!

“However, once everything was calm, I always asked myself, if I’m not doing it, who else is doing it? And when I remember the people in Sennar, Gezira states suffering from Mycetoma-the warm welcome and hospitality it stops being a disease and it becomes about the people because everybody is looking forward to you providing solutions for them,” she says amid deep thoughts.

Unlike her work in Kenya which involved HIV/AIDS and Ebola, Sudan presented a new experience altogether. Nobody, even the physicians, understood Mycetoma in Sudan.

Misdiagnosis, lack of advocacy, investments in research and development, and point-of-care diagnostic tests for Mycetoma are making the fight against the disease a big challenge.

“Patients do not know about the disease, they are hidden away and don’t get treatment. Mycetoma is not a reportable disease to the Ministry of Health, so even if a physician finds it in the clinic, they leave it in the medical records making prevalence rates capture quite hard,” she explains.

Dr. Borna consulting a mycetoma patient Adiouma Sow at Saint Louis Regional Hospital with the presence of some trainee doctors. Copyright, Mamadou Diop-DNDi.2023

The Mycetoma Belt runs from Mexico across Africa from Senegal, Chad, Mauritania, Sudan, and Ethiopia and goes all the way to India. However, there are countries outside the belt that are reporting cases of Mycetoma.

“In Kenya, for example, we recently conducted a medical camp in Kacheliba, West Pokot County and we had patients presenting with Mycetoma. The disease is quite prevalent, but we are not looking for it.”

She adds that DNDi and the US Centre for Disease Control are working on a global surveillance program looking at a total of 15 countries to provide them with a better idea of Mycetoma prevalence around the world. “We are hoping by next year we will have this data to enable us to understand the disease burden and guide in planning,” Dr. Nyaoke-Anoke notes.

At the height of COVID-19, she managed the ANTICOV trial in Kenya and Sudan, the largest clinical trial in Africa for people with mild to moderate forms of the disease. In 2022, the trial was stopped as the pandemic waned.

She has also supported studies in anti-microbial resistance in Kenya and Uganda carried out by the Global Antibiotic Research and Development Partnership (GARDP) a joint initiative by WHO and DNDi.

Dr. Nyaoke-Anoke finds fulfillment and joy in prioritizing neglected populations. “It is my passion to ensure that we are not neglecting a particular population in research or development just because they cannot afford the drugs that we make,” she says.

She points out the need to prioritize neglected tropical diseases (NTDs) like Mycetoma. It is the most neglected disease due to a lack of basic information about transmission, and incidence, and has few treatment methods.

Mycetoma tends to be found in poor and remote areas and patients who do not have access to healthcare. The disease does not also get the attention of pharmaceutical companies to be able to develop drugs for them.

“During this year’s World NTD Day, the Ministry of Health launched its Strategic Master Plan, but Mycetoma was still missing. Looking at the available resources for NTDs, it’s still hard to realize, because out of the 21 NTDs, 14 are in Kenya,” she notes.

Her worst moment as a research scientist is “observing the neglect of women in NTDs. In Mycetoma, the disease is disfiguring and prevents women from working and they tend to be affected most because they tend to hide and do not seek treatment and care. Others assume it’s witchcraft since they do not understand the disease.”

“Within the clinical trials that we conduct, the drugs that we have are contraindicated in women of childbearing potential because they can cause teratogenicity-a situation where the drug can affect the embryo during pregnancy causing abnormalities,” she asserts.

The team is also working on a Strategic Plan for the Mycetoma disease program that will help them conduct some clinical trials and studies specifically for women of childbearing potential.

And so what is next in her career as the Head of Mycetoma? “The disease promises to be quite exciting in a few years. We had hoped for the registration of fosravuconazole in Sudan within the year and further discussions with other countries where Mycetoma is endemic to be able to provide treatment to this highly neglected disease,” she states.

In November 2023, results from the randomized trial demonstrated that the new oral treatment- fosravuconazole is safe, and effective in treating Mycetoma.

In commemoration of International Women’s Day, she tells young African women “It is possible to have the career of choice and still fulfill societal expectations including having a family. For young women in STEM, you still need the same grit and perseverance to succeed.”