Fifty plus: A single man’s ongoing battle against HIV and kala-azar (visceral leishmaniasis)

“HIV? That’s nothing compared to this,” he says. “With HIV, I can take my medication anywhere—even at church, while standing and praying. I don’t even need water to take the pills. But this... this is different. Kala-azar makes everything impossible.”

 

To protect his privacy and respect his journey, I will not be using his real name in this account. Instead, I will refer to him as Melkamu.

Melkamu sits on a hospital bed at the University of Gondar, Leishmaniasis Research and Treatment Center (LRTC) in University of Gondar/Ethiopia. For over 20 years, he has been fighting  Kala-azar (visceral leishmaniasis), a parasitic disease that has caused him to relapse more than 50+ times. “Sometimes, I feel like the doctors must be tired of seeing me. But thank God, they don’t seem to get tired of me,” he says.

His battle is made even harder by HIV, a co-infection that makes Kala-azar deadlier. Melkamu’s ongoing battle is not unique; it reflects a larger, global crisis where millions suffer in silence from co-infections of HIV and Kala-azar. According to the World Health Organization (WHO), people living with HIV and infected with Kala-azar have a much higher chance of developing the full-blown disease, along with higher relapse and death rates. While antiretroviral therapy (ART) helps by reducing the severity of Kala-azar, delaying relapses, and improving survival, many patients, like Melkamu, continue to face a long, painful fight.

Kala-azar, is often known as the “poor man’s disease.” It primarily affects the most vulnerable populations in regions with limited healthcare access. Spread by the bite of infected sandflies, the disease causes fever, weight loss, and severe organ damage. Without treatment, it is almost always fatal.

Globally, over 600 million people are at risk of Kala-azar, with 50,000 to 90,000 new cases reported each year, according to World Health Organization (WHO). People living with HIV are more than 100 times more likely to develop active Kala-azar than those without HIV. High co-infection rates have been reported in countries like Brazil, Ethiopia, and India’s Bihar state.

For patients like Melkamu, the stakes are high. Current treatments for Kala-azar in Africa are often expensive, lengthy, and come with serious side effects. Many patients cannot afford the treatment or fail to complete the long course, leading to relapses and increased mortality. This makes it critical to develop cheaper, shorter, and more effective combination therapies that can reach more people and save more lives.

Before Kala-azar turned his life into a cycle of illness and recovery, Melkamu was a farmer and carpenter in the rural community of Abdurafi. His days were filled with hard work, from tending crops during the rainy season to building houses and crafting furniture during the dry months. Though demanding, it was a life of purpose and stability.

That stability began to crumble in 1996 G.C, when Melkamu first experienced troubling symptoms. Frequent nosebleeds would last for hours, his appetite vanished, and his digestive system stopped functioning properly. As his strength faded, even getting up from where he was sitting became a struggle.“I could feel my strength fading,” Melkamu says, reflecting on his symptoms. “Eventually, it became so difficult for me to even get up from where I was sitting.”

For two years, Melkamu searched for answers. He visited clinic after clinic, but the only diagnosis he received was malaria. “Doctors gave me Fansidar and chloroquine, but nothing worked,” he says. Meanwhile, people in his community were dying of a mysterious illness. “A lot of people around me were dying because we didn’t understand what the illness was,” he explains. “It wasn’t just malaria; it was something else, but we didn’t know what.”

Frustrated and desperate, Melkamu resolved to find the truth. “I realized that if I was going to die, I at least wanted to know what the illness was so that I could understand it,” he says. “I didn’t want to die without knowing what was really happening to me. So I decided to go to Doctors Without Borders, even though I had already been to several clinics. I went there hoping they could give me a more accurate diagnosis.”

In April 1996 G.C, he traveled to Humera, where Doctors Without Borders operated a temporary clinic in a tent. For the first time, Melkamu received thorough medical attention. Days later, he was diagnosed with Kala-azar. The news was devastating, but it also brought relief. “It wasn’t the fact that I was diagnosed with Kala-azar that made me cry,” he says. “It was the fact that I finally had an answer.”

For over two decades, he has lived in the relentless grip of Kala-azar, enduring more than 50+ relapses. Each recovery feels like a fleeting respite, overshadowed by the disease’s inevitable return. “How many times can I keep doing this?” Melkamu asks. “Every three or four months, she comes back,” he says, referring Kala-azar as she. “I’d recover and then relapse again. It’s a never-ending cycle. I come to the hospital, get treated, go home, and then fall sick again. It’s exhausting, and I feel hopeless sometimes.”

The physical toll of these relapses is immense. Painful treatments like Sodium Stibogluconate (SSG) have left his body battered. Even simple tasks became unbearable. “I had to kneel to cook because sitting was too painful,” Melkamu recalls. Despite his efforts to rest and recover at home, the disease always forces him back to the hospital. “Let me give you an example,” he says, his voice heavy with sadness. “I came here in July, went home in August, and tried to stay home for the past two months, even though I was sick. But here I am again.” this interview was conducted on December 2024.

The financial burden has been equally devastating. Once a farmer and carpenter, Melkamu’s ability to work has been completely eroded by his illness. “There were people who used to help me financially, but most of them left the country. Now, it’s just so hard,” he says. “It’s not just the disease—it’s life in general. Kala-azar is relentless.” With his family in Eritrea and no steady income, Melkamu relies on the kindness of friends, church support, and the doctors and nurses at the Gondar Leishmaniasis Research and Treatment Center (LRTC), who sometimes use their own money to help him. The church has even built him a small shelter made of plastic, where he lives part-time. “I divide my time between two places,” he explains. “Two months here at DNDi, getting treatment, and two months at the church, living in the little house they built for me”.

Emotionally, the cycle of relapse and recovery has left Melkamu feeling isolated and hopeless. “Sometimes I’ll stay home, even when I’m sick, just to avoid coming back too soon,” he admits. “I can’t shake the feeling that I’m a burden. I sometimes feel like the doctors must be tired of seeing me all the time. But thank God, they don’t seem to get tired of me.” Despite his gratitude for their care, the weight of his situation is clear. “In the beginning, I used to count the days, trying to hold on to hope. But now, I don’t even think about living or dying anymore,” he says with a voice full of sadness.

For Melkamu, the burden of Kala-azar is compounded by his co-infection with HIV, a pairing that amplifies the devastation caused by both diseases. Together, they create a vicious cycle—HIV suppresses the immune system, making patients like Melkamu more vulnerable to Kala-azar, while Kala-azar accelerates the progression of HIV. It’s a cruel combination that Melkamu understands deeply, both physically and emotionally.

When asked how Kala-azar has affected his life, Melkamu’s response is immediate and filled with despair. “You can’t even call this a life,” he says, his voice tinged with sadness. “Out of everything, do you know what’s really challenging me? It’s the Kala-azar—Kala-azar.” He pauses, as if to gather his thoughts, before repeating with a heavy tone, “Out of all the struggles I face, it’s the Kala-azar that challenges me the most.”

“HIV? That’s nothing compared to this,” he says. “With HIV, I can take my medication anywhere—even at church, while standing and praying. I don’t even need water to take the pills. But this... this is different. Kala-azar makes everything impossible.” The relentless hospital stays, months-long treatments, and severe side effects have stripped Melkamu of any semblance of normalcy.

The emotional toll of navigating both illnesses is overwhelming. “At this point, I’ve given up,” Melkamu confesses. “In the beginning, for the first eight or ten years, I used to count the days, trying to hold on to hope. But now? I don’t even think about living or dying anymore. I’ve let go of it all.” His quiet resignation speaks volumes about the toll of co-infection. “This disease has taken so much from me—it’s broken my spirit,” he says. “Kala-azar has made me give up on everything.”.

It has been 12 years since Melkamu last worked. Those years have taken away not just his strength but also the everyday things he once enjoyed. “I used to have so many plans, so many things I wanted to do,” he says. “But now, even just working in the fields or earning money to buy food feels like a distant memory. You have no idea how satisfying it is to simply work—to buy something to eat, to feel like you’ve done something for yourself.” His sadness is clear, and the weight of his words is heavy.

For Melkamu, holding on to hope feels like a struggle. Sitting on his hospital bed, he talks about the dreams he once had—dreams of getting married, having children, and living a normal life. “I used to imagine myself building a family and a future like everyone else,” he says. “But now, those dreams feel impossible.” The disease, Kala-azar, has taken so much from him—his health, his freedom, and his ability to plan for the future even to live a normal life as each one of us. “I don’t think about those things anymore,” he says. “They’re just dreams that will never come true. I’ve come to terms with it..”

Now, Melkamu has just one simple wish. “All I want is to walk,” he says, with sadness in his voice. “To stand up and walk like a normal person. To walk and talk with my friends and enjoy small moments with them—that’s all I dream about now.” His voice softens as he repeats his wish. “Just to walk. Just to stand tall. That’s all I ask for, and it would be enough for me.”

Even with everything he’s been through, Melkamu is grateful for the care he receives. “If it weren’t for them, I don’t think I’d still be here,” he says of DNDi, the organization supporting him. “The doctors, nurses, everyone here they treat us like family.” Their kindness has given him more than just medical treatment it’s given him a sense of dignity and hope, even in the darkest times.

Inspired by his gratitude, one can’t help but wonder: how has the treatment been since you arrived here?

Life at DNDi’s University of Gondar, Leishmaniasis Research and Treatment Center (LRTC) is about more than just medical care. For Melkamu and many others, it has become a place of comfort—a sanctuary where they are treated as human beings, deserving of respect and kindness, not just as patients.

“Here, we’re like family,” Melkamu says. From late-night arrivals to moments of emotional struggle, the team at DNDi goes the extra mile to make sure patients feel cared for. “Even if I come in the middle of the night, they make sure I have a bed,” he adds.

Unlike other places, where paperwork and delays can slow things down, DNDi focuses on what patients need most. Melkamu shares how, in some hospitals, getting a simple lab test could take days because of endless forms. But at DNDi, it’s different. “Here, they don’t waste time. They check everything quickly and start treatment right away,” he says. “Sometimes, they even use their own money to help us,” he adds, his voice full of gratitude.

“The way they treat us is with respect,” he continues. “Even when we shout at them or say mean things out of frustration, they still understand us. Where else can you find this kind of treatment? The only other place I’ve seen this level of care is with Doctors Without Borders. What they do here is truly family work. You say so many mean things, and yet they still treat you kindly. Where else can you find this kind of care? Nowhere.” he said.

And I started wondering,

How could someone choose HIV over Kala-azar? The very thought seems unthinkable. HIV, a disease that has claimed millions of lives and continues to impact countless others, might seem like the greater burden. But for Melkamu, a man who has endured the unimaginable, his words paint a stark and shocking picture:

It’s not the disease itself that makes Kala-azar harder to bear than HIV. Instead, it’s the medications, the treatment protocols, and the relentless struggle to access care that turn Kala-azar into an even heavier burden. Melkamu’s story is not just his own; it reflects the struggles of thousands who suffer in silence, waiting for better solutions.

Melkamu’s struggles highlight the urgent need for better solutions. Thankfully, progress is being made.

There is hope on the horizon. The Drugs for Neglected Diseases initiative (DNDi) is leading efforts to develop an oral drug for Kala-azar that could transform the way this deadly disease is treated. Currently undergoing Phase II clinical trials in Ethiopia, the molecule LXE408 has the potential to replace the toxic, injection-based treatments that dominate Kala-azar care today. Unlike the grueling 17-day injection regimens, LXE408 is administered as oral pills, offering a simpler and less painful alternative that could drastically reduce the burden on patients and healthcare systems.

Dr. Eleni Ayele, who co-led research at the University of Gondar’s Leishmaniasis Research and Treatment Center (LRCT), had previously highlighted the challenges of current treatment options in Ethiopia. She noted that they were often toxic, required injections, and forced patients to travel to distant hospitals and endure prolonged hospitalizations. Dr. Eleni Ayele had expressed hope that an effective oral treatment would be less toxic and allow patients to receive care at primary healthcare centers closer to their homes.

For Melkamu, the implications of such a treatment are profound. We can Imagine being able to take a pill at home, No injections, no weeks in the hospital—just pills. This vision, once unimaginable, is now within reach thanks to DNDi’s groundbreaking work.

The development of LXE408 represents more than just medical innovation; it is a lifeline for communities ravaged by Kala-azar. The disease disproportionately affects the world’s poorest populations, making affordability and accessibility paramount. DNDi’ ensures that, if successful, the drug will be distributed on an affordable basis worldwide, with a focus on endemic regions like Eastern Africa.

Eastern African countries have been striving toward eliminating Kala-azar, and simpler, more effective treatments are essential to achieving sustainable results. Dr. Fabiana Alves, Director of DNDi’s Leishmaniasis program, had previously emphasized the importance of finding new treatments. She had stated that these were critical to sustainably eliminating Kala-azar in all parts of the world.

For Melkamu, the treatments have been a never-ending cycle of exhaustion. Each relapse feels like a losing battle, where the cure becomes almost as unbearable as the disease itself. Unlike his HIV medications, which are simple, portable, and easy to take, Kala-azar treatments have consumed his life.

This new drug, LXE408 has the potential to fix the very problems that Melkamu and countless others face. Imagine a world where Kala-azar patients no longer need to endure weeks of injections or the painful side effects of toxic medications. Melkamu’s story is a powerful reminder of what is at stake. The toxic, injection-based treatments that have defined Kala-azar care for so long have held back progress, trapping patients in cycles of pain and hospitalizations.

While LXE408 offers a transformative potential for individuals like Melkamu, DNDi’s mission is not just about creating a new drug. It is about reshaping healthcare for neglected diseases. The goal is to ensure treatments are not only effective but also affordable and accessible to everyone who needs them. In partnership with local governments, researchers, and global health organizations, DNDi is paving the way for treatments that prioritize patients. They are working to integrate these new medications into healthcare systems, training healthcare workers, and ensuring that people like Melkamu are no longer left behind.

DNDi’s work is more than scientific advancement; it is a testament to the power of compassion and collaboration. As the trials for LXE408 continue, Melkamu’s story stands as a symbol of what is at stake and what can be achieved when innovation meets humanity. The journey to a simpler, safer cure is far from over, but for the first time in years, it feels possible. For Melkamu and countless others, that possibility means everything.