I saw firsthand in Nigeria that drugs alone can’t win the war against tuberculosis

Recently, after years of pressure, advocates including author and philanthropist John Green scored victory against Johnson & Johnson over a patent on a key tuberculosis drug. The campaigners hope the move will give millions of people affected by tuberculosis in low- and middle-income countries access to the lifesaving medication bedaquiline.

But the drugs alone can’t win the fight against the debilitating disease. I have seen firsthand how socioeconomic barriers block patients from accessing even available treatments.

In 2018, after completing my undergraduate degree in biochemistry, my university posted me to work as a volunteer in a hospital inside a large military base in the northern Nigeria city of Jos. There were many soldiers at the hospital when I arrived. Some of them looked to be in their early 20s, their bony fingers tucked on sophisticated FN rifles, with no trigger guards. It turned out they live on the hospital compound. The town has endured many years of brutal religious conflicts.

The morning after I arrived, a young military recruit was showing me around the buildings within the hospital’s perimeter wall. As we walked inside one of the building’s dimly lit corridors, we passed children and women, some in faded dresses, sitting in rows of long blue metal chairs waiting to see doctors. “TB DOT,” one sign read in all capital letters, at the far corner of the corridor, on the top of the door of a small, dusty, ill-kept office.

DOT, which stands for “directly observed therapy,” is the World Health Organization’s recommended strategy for the management of active tuberculosis cases. The approach allows health professionals to watch patients take their medication and ensure adherence to drug regimen. This helps prevent unnecessary gaps and decrease the chances of treatment failure. The method is especially crucial for patients with drug-resistant TB, a form of the disease that’s more deadly.

I requested to be assigned to the TB DOT in the hospital for my service year. During my stay at the TB DOT, I was tasked with documenting and keeping records and drug regimens of people infected with the disease, who are admitted to the hospital to start receiving the TB drugs that they would be on for six to 24 months. I watched many patients swallow dozens of pills. One wet and cold morning, an old man inside the DOT was swallowing, swallowing again, his throat moving with the force of getting the pills down one at a time.

The patients had to take 24 pills per day, which was just the start of a painful regimen. The drugs have a host of side effects, including nausea, headaches, and depression. And many people infected with the disease lack adequate motivation to swallow the daily drug cocktail meal. Those patients who were doing well would be sent home with supplies of the drug. To make sure the patients didn’t miss their daily doses and treatment regimens, I called them up on the phone to show support and encouraged them to come to the clinic. Although the drugs were provided through a national TB program to stop the spread of tuberculosis in Nigeria, some patients told me they couldn’t afford to walk or pay for transport to the hospital. I tried to help, when I could, but on my own I couldn’t transport everyone to and from the DOT.

Consequently, some patients did not finish their drugs, and, sadly, some passed away. I felt helpless. People infected with the disease are among the poorest and most vulnerable in society. So, the drugs alone aren’t enough; they need social and economic support.

I wasn’t alone in worrying about the dismal conditions of people living with tuberculosis. In 2021, I met Anastasia (Tasha) Koch from South Africa at an international science summit in Berlin. As we mingled over drinks and pizzas in the conference hallways, Koch told me that although she has a Ph.D. in biomedical science, she was attending the summit as a science communicator because advocacy has been her focus for the past five years. She had been dismayed by the drudgery of her tuberculosis research and came to feel that she could make a bigger impact by leaving the lab to work directly with local communities affected by the disease. This became her driving force for creating a nonprofit called Eh!woza.

Eh!woza combines science communication, youth advocacy, and community engagement to tackle social problems. They hold events in local communities in South Africa to engage the public and policymakers about scientific research, and discuss the social impacts of infectious diseases such as HIV and TB on people affected.

In areas with high rates of HIV and TB such as Khayelitsha, a large township in the suburb of Masiphumelele, South Africa, people infected with TB are often neglected and stigmatized in the community. Family members and residents are afraid of catching the disease, and because tuberculosis and HIV travel together in these communities, all of the fear that people have for HIV gets transferred to TB. Another reason for the stigma against people infected with TB is the lack of education about the disease.

Equipped with funding from the London-based foundation Wellcome, Eh!woza has been trying to use a unique approach to change the situation. The organization recruits teenagers from Khayelitsha and other communities with high TB burden in South Africa, and trains them to produce documentaries to raise awareness about tuberculosis and help decrease stigma.

The teenagers, some TB survivors themselves, visit labs in South Africa to engage with biomedical researchers and learn the scientific basis of tuberculosis. The experience helps them tell better TB stories to engage the public. Koch imagines that some of them will become not just researchers, but social justice advocates for people affected by TB.

“People think it’s just antibiotics and testing, but people infected with the disease need more than that — they need good living conditions, nutrition, and access to sanitation,” Koch recently told me on the phone.

Eradicating tuberculosis globally can’t happen without better TB drugs, and access to bedaquiline will help tremendously. But it’s not just about having medications that target the disease. The social conditions of people living with TB need to change. If that does not happen the disease will continue to persist, and it’s only a matter of when a deadlier form of TB will emerge. And then, in little or no time, it’ll find itself in cities across the world.

On World Tuberculosis Day in March, Eh!woza held an event near Khayelitsha. Koch’s Eh!woza team put on the signature South African music, Amapiano, and the audience got up and danced. A nurse took the microphone, and she encouraged people to take their treatments and explained some basics about TB and how it spreads. Koch played some documentaries produced by her teenage filmmakers in local languages. A few researchers from neighboring University of Cape Town spoke about their TB work and ongoing clinical trials.

Then, people started asking questions. One resident commented: “It’s fine that you come here to tell us to take our medicines and to finish it, but how do we do that if we don’t have the money for transportation and to buy the food we need?”

The question made me think back to the social conditions of the patients I worked with while in Nigeria. When people are poor, disadvantaged, and have a stigmatized disease, giving them access to medication is not enough. Drugs alone cannot stop tuberculosis.