In 2014, as an undergraduate student, Annie Liang attended the 67th World Health Assembly (WHA) as part of a youth delegation with Universities Allied for Essential Medicines (UAEM), where she and her fellow students encountered mycetoma for the first time.
A pitch she later co-submitted with fellow University of Toronto student, Simran Dhunna, to the Untold Global Health Stories competition led to a reporting series and contributed to the growing international momentum that saw mycetoma added to the World Health Organization’s (WHO) official list of neglected tropical diseases in May 2016. Ten years on from that milestone, Annie speaks to DNDi about the power of grassroots advocacy.
What first sparked your interest and advocacy in neglected diseases?
I began my career as a neglected disease researcher. Early in my undergraduate studies, I discovered through an internship the profound lack of investment in neglected diseases, yet they affect more than one-sixth of the world’s population, primarily in low and middle-income countries. This injustice- and how challenging it was to get people to even care – made a huge impression on me.
I saw these challenges firsthand: from the university professor that told me “No one on campus would care” about NTDs, to people dying annually from diseases that already have cures. To me, it didn’t matter if “no one cared” – I cared, and I wanted to work on discovering new cures for neglected diseases. I switched my major to Pharmacology and spent the next few years working in an experimental medicine lab on exactly this, and many more years working alongside youth and civil society organizations to push for more research on neglected diseases, and ensure existing medicines are affordable to those that need it most.
When was the first time you heard of mycetoma?
It was during the 67th World Health Assembly in Geneva in 2014. I was part of a youth delegation with Universities Allied for Essential Medicines, about ten of us. We were all students, ranging from undergraduates to medical to master’s students, united by a shared commitment to improve access to essential medicines and address global health inequities.
That year, there was an agenda item at WHA looking at alternative research and development pathways for neglected diseases, so it was very much our world. And then a few colleagues from our delegation stumbled across a small side event room on mycetoma, being hosted by Sudan, was being held.
So, the thing is, at the WHA, you’re not allowed to canvass or hand out pamphlets. There are strict rules around outreach. But the mycetoma group were going against those rules. They were trying really hard on the floor to get people interested, handing out pamphlets, lobbying delegates, doing everything they could. And that in itself was heartfelt – to see them try that hard just to get people there.
And inside that side event room, the brochures had been so neatly laid out, thoughtfully, place by place. And no one came. It wasn’t that people had left the Assembly. It was the last few days, so you might think, well, people are leaving. But it wasn’t true. Other side events were packed. People were still there. They just weren’t in that room. What stayed with me most wasn’t the empty room – it was the disappointment of delegates and speakers who had travelled halfway around the world to speak about a disease affecting their communities, only to find almost no one there to listen.
Wow, that is devastating. What happened next?
We felt this mixture of sadness and helplessness. Here we were, at the world’s biggest stage for global health, watching mycetoma fail to capture the attention of the very people with the power to change it. As students, we couldn’t help wondering: if even here we couldn’t get people to care about mycetoma, what hope did a handful of students have?
But after the initial disappointment came a different question: What could we do? We were only students, without the influence or resources of governments or international organizations, but we realized we did have something: our own university campuses, and student networks.
That day, our delegation resolved to do whatever we could to raise awareness of mycetoma. We started with simple ideas: factsheets about mycetoma and a Mycetoma Awareness Day across our universities. They were small acts, but they were our way of saying that even if the world wasn’t paying attention world wasn’t paying attention yet, we still cared.
A year later, I came across the Untold Global Health Stories Competition organized by Global Health Now and the Consortium of Universities for Global Health (CUGH). And I thought, this is probably the most untold story I know. So, together with my fellow student, Simran Dhunna, we submitted a pitch about mycetoma, about that empty room, about the neglect. And it won.
What came out of the winning?
The sheer outpouring of support that followed far exceeded anything we could’ve imagined in our wildest dreams.
Global Health Now brought in a journalist, Amy Maxmen, and sent her to Sudan. She produced a stunning series on mycetoma. And then one thing led to another. The story was presented at the Pulitzer Communications Workshop at the CUGH conference, reaching a wider global health audience.
Around the same time, DNDi announced early clinical trials on drug candidates for mycetoma; PLOS NTDs launched an open access collection on mycetoma, making scientific knowledge free and accessible to all; humanitarian organizations, through partners like the Sudan American Medical Association, donated medical supplies and commodities, helping bring care to mycetoma patients who had long been underserved; and teams of physicians and students volunteered for a pilot mycetoma surveillance study in Sudan to help fill critical data gaps for mycetoma control efforts.
Gradually, these parallel efforts began to converge, culminating in the WHO Executive Board’s January 2016 recommendation to add mycetoma to the next WHA agenda, and its eventual inclusion on the WHO list of NTDs in May 2016.
Were you at the World Health Assembly in 2016 when mycetoma was added to WHO’s list of neglected tropical diseases?
I remember receiving a video from a friend, filmed from the NGO/ Civil Society balcony, of the exact moment the resolution was passed and mycetoma was officially added to the WHO NTD list in front of the General Assembly. It was blurry, and the sound wasn’t great, but you could still feel the gravity of the moment. People were crying and applauding. And I remember crying too.
No, I was in Kenya, on the outskirts of Eldoret, conducting a mixed-method household survey as part of fieldwork. I was following the WHA proceedings on really bad Wi-Fi, catching bits and pieces when connectivity permitted. But I had colleagues from the UAEM youth delegation who were there on the ground, and they kept me updated as things unfolded in real time.
You’ve been following mycetoma developments since then. How does it feel, 10 years on?
It’s bittersweet. On one hand, it’s been incredible to see how research has expanded over the last decade: the emergence of a small number of clinical trials exploring treatment approaches, alongside a growing body of published work trying to better understand diagnosis and disease burden. So many journal articles exist now that simply didn’t 10 years ago. There’s also more visibility, more interest, and more scientific collaboration than before.
But there’s also been real tragedy. The Mycetoma Research Centre in Khartoum was damaged during the conflict in Sudan, with major disruption to care, research, and long-standing clinical work. It has since begun to rebuild, supported by funding and under the continued leadership of Professor Fahal. It remains a stark reminder of how fragile progress in this field can be.
What would you like to see for mycetoma going forward?
I think this is the scientist in me coming back out. There is so much potential for new therapies, for deeper collaborations, for science that is guided not by market incentives, but by need and a shared responsibility for the public good. Mycetoma sits in this difficult space, and I hope more scientists are drawn to it – not out of obligation, but because they recognize what becomes possible when attention and collective effort are finally directed towards it.
What I would like to see is sustained scientific engagement: not just for mycetoma, but for other neglected diseases that rarely enter the spotlight. More collaboration across borders, more shared work towards solutions that exist because people chose to work on them, and chose not to look away.
Market incentives alone should not determine which diseases we choose to care about. Neglect is ultimately a choice. And it’s one we can choose to make differently.
Looking back, what has this whole experience taught you?
First, we really stand on the shoulders of giants. Whether in science, advocacy or social change, every step forward is built upon the collective efforts of those that came before us, and carried forward by those who will come after us.
Long before we arrived, clinicians, researchers, patients, and advocates had already spent years bringing attention to mycetoma. We were fortunate to play one small part in a much bigger story. From mycetoma advocates like Professor Fahal, to the Global Health Now team who had lent me their voice and platform when I had none, to my fellow youth delegates that continued to carry the baton and advocate for mycetoma on subsequent WHA floors. To everyone that joined in that outpour of support back in 2015-2016 and lent us your voices. Mycetoma is a story about what advocacy can achieve when enough people refuse to look away.
Second, it doesn’t matter how small or insignificant you feel in the world – your story is still worth telling. One of the biggest lessons I’ve learnt about pushing for social change is that you’re never truly as alone as you think; it’s a matter of finding your people. So tell your story and ground it in the rhetoric of the human experience. You never know where it will land, or how far it will travel once it leaves your hands. And sometimes, help can appear from the most unexpected of places.
Lastly, I want to thank UAEM for believing in students and in grassroots advocacy as a force for change in global health – even, and especially, in moments when we were still learning to believe in ourselves.
Photo credit: Photos courtesy of Annie Liang
