‘My patience is running low’: Inside the fight to end tuberculosis

Nandita Venkatesan, a survivor of two vicious bouts of tuberculosis, recalls the moment in 2013 that her life changed forever. She was 23 and recovering in hospital in her home city of Mumbai after undergoing no fewer than six surgeries and a 100-day course of strong antibiotic injections to fight the infectious disease when she experienced a side effect she had not previously been informed about: total hearing loss.

“I was a very sprightly teenager, I loved listening to music and I loved dancing — so both losing my hearing and the experience of being hospitalized for so long was very hard for me to accept,” Venkatesan says. She had already spent 13 months recovering from TB in 2007 during her first year of college, so to be diagnosed again was a “grave shock,” Venkatesan describes.

The second time it was hard to treat as it was a comparatively rare form of intestinal TB. “With the condition progressively worsening with every passing day, one surgery turned into six and I became skin and bone — my weight dropped to just 29 kilos,” Venkatesan says. That’s when her doctors put her on the course of injections, which ultimately saved her life.

Speaking out

Not all TB is cured with regular antibiotics. There can be complications, or in some cases, the TB is resistant to drugs, known as multidrug-resistant TB. The drugs used when others don’t work are associated with harsh side effects, require long treatment courses, and often have low success rates. A 2017 article in The Lancet claims that studies have shown that hearing loss is a side effect of the types of drugs often given in these situations — capreomycin and a group of medicines called aminoglycosides — in up to 50% of patients. 

Venkatesan argues these poor treatment options are the result of a dearth of research and investment in fighting TB over several decades — a view supported by a World Health Organization research — leaving those who become seriously ill with no option but to take “toxic drugs.” 

Now a journalist, 32-year-old Venkatesan has taken steps to rebuild her life. She completed a master’s in public policy at the University of Oxford in 2021 and even rediscovered her childhood love of classical Indian dance by teaching herself to count the steps in time to music. Importantly, she has eschewed the advice she was once given after her TB diagnosis not to talk about it with anyone because of how stigmatized the disease is. Instead, she has become a powerful voice advocating for a more robust response to TB from the global community.

COVID-19 setbacks

Despite available treatments, 1.5 million people died of TB in 2020, the most recent year for which there is available WHO data, making it the biggest infectious disease killer aside from the ongoing COVID-19 pandemic. Death rates are high because out of the 10 million people who are estimated to fall ill with TB each year, some 3 million do not get any or adequate treatment.

With an eye toward the next planned United Nations high-level meeting on tuberculosis in 2023, TB experts, medical professionals, and survivor-advocates are keen to see pressure applied and the disease taken more seriously. Ending TB by 2030 is a target under Sustainable Development Goal 3 on good health and well-being, but the pandemic only slowed progress.

Austin Obiefuna, president of the Afro Global Alliance, a health education and advocacy NGO with offices in Ghana, Nigeria, and South Africa, who is also vice chair of the board of Stop TB Partnership, told Devex that the pandemic “created a huge gap” in progress towards TB targets, by diverting funds away from it.

“It reduced the momentum that we all had in our efforts to see an end to TB in our lifetime. It really affected the TB patients, the caregivers, and the entire community,” he says, an observation he made as his NGO supports people with TB.

His perspective is supported by research from Stop TB Partnership, which found that in the first 12 months of the pandemic, the nine countries with the highest TB burden globally saw an average of 23% decline in the number of people being diagnosed and treated for TB.

Old-fashioned medicine

Suvanand Sahu, deputy executive director of the Stop TB Partnership in Geneva, and a medical doctor by training who has worked on the response to TB in India and Southeast Asia, agrees the pandemic has affected progress but says that many factors — dating from long before COVID-19 — led to TB becoming such a stubborn global health issue.

First, he says, there is a huge global TB burden due to about 2 billion people — around one in four of the global population — having what is known as inactive or latent TB. People who carry the TB bacteria therefore have a lifetime risk of developing active TB if their immunity is compromised.

Against this backdrop, medics do not have access to modern tools to effectively respond. “Using microscopy [studying bacteria in a laboratory using a microscope] to diagnose TB was first discovered in 1882 and it's still being used as the mainstay diagnostic tool,” Sahu says. “But microscopy is not the best tool to diagnose TB — you can detect it through automated molecular tests [which are faster],” he continued. “This option is reaching very few people — it’s been reported that only one out of three people who were diagnosed with TB in 2020 had a molecular test.”

In addition, the currently available BCG vaccine for TB is 100 years old, Sahu says. “We need new effective vaccines. We currently have more than 15 potential vaccine candidates for TB, [but] they are on a very slow pathway — two decades is the timeframe we are looking at for the R&D.”

In terms of treatments that work more quickly, and do not come with harsh side effects, Sahu says: “There are new drugs out there such as Bedaquiline, Delamanid and Pretomanid. But these are not reaching everybody in need, and not all countries have been able to scale up.”

Venkatesan argues that TB is a disease that gets forgotten about because it predominantly affects people in low- and middle-income countries. “It's a blatant form of racism in some ways — that the disease primarily ends up affecting the developing and under-developed countries,” she says. “There is an impression that TB is a thing of the past, and it's only these poor people who end up contracting it.”

“The pharmaceutical companies, medicine manufacturers and a lot of the research happens in the West and they have a constant hesitation that they cannot recover money from this disease if they invest in it,” Venkatesan continues.

Without effective diagnosis, preventative measures like vaccines, and treatments, TB will spread, Sahu explains. “TB is an airborne disease, and so someone with undetected, untreated TB can infect 5-15 additional people each year,” he says, adding that if the person who catches it is, for example, on a low-income daily wage, they will lose money if they take time off to seek care. “People [in this situation] postpone seeking care until they start to cough up blood and become alarmed — but by that time it is late, they might have transmitted the infection to all household members and to people at the workplace.”

Seizing new opportunities

Programs that reach people directly — by doing house visits and making it as easy as possible to fit into people’s lives — have proven to be effective at tackling some of the above issues around stopping the spread and helping to prevent drug resistance, but that approach takes time and expense. Counterintuitively, this is an approach that Obiefuna observes was developed more during COVID-19 lockdowns, although it needs to be scaled.

“With TB, there is this directly observed form of treatment, where you have to go to the clinic [to be observed taking the medication] because if you do not take your medication meticulously you might end up having antimicrobial resistance,” Obiefuna explains. “So, efforts were made during lockdown by civil society to support TB clients — sometimes even visiting them house to house with the Community Led Monitoring teams to ensure that they adhere to their medication courses.”

It is in these types of efforts, as well as some improved capacity in global health systems and a revived focus on testing and contact tracing as a result of the pandemic that may be good news for TB, Sahu says. “TB programs had been planning that kind of testing at scale for years but never managed to do it,” he says. “But now it is feasible, even in high TB burden countries. Molecular tests, genetic sequencing — all these tools — we can start to use them more as they came into more frequent use during the pandemic.”

“With genetic sequencing, you maybe would have found one specialized laboratory in a country doing it, but the scaling up of the labs that were set up for COVID-19 in Africa,  with the help of CDC Africa, can be repurposed for TB now,” Sahu continued. “Similarly, in India the lab networks that were scaled for COVID-19 can now be used for the TB program.”

But perhaps even more promising was what was proved possible when the world makes a concerted effort to combat a disease.

Before COVID-19, Venkatesan says she had more patience with the slow progress on TB but now her “patience is running low” because she has seen how fast the world can mobilize when it needs to. “People with TB don’t deserve drugs that make you end up losing all your hearing, like I did,” she says, adding that she wants to see “very concrete progress” coming out of the U.N. high-level meeting, including a commitment to producing more effective vaccines and drugs.

Obiefuna agrees: “I’d like to see the vaccine being prioritized,” he says. “I always take COVID as the perfect example; we saw that heads of states, political leaders, were able to rally together and for us to have COVID vaccines in less than two years.”

But with a gap in the funding required to end TB, Obiefuna is unsure how we change that course — referring to the call at the 2018 U.N high-level meeting for $13 billion per year in funding by 2022. In 2020, only $5.3 billion was made available, representing a funding gap of around 59%. 

For Venkatesan, what’s needed is an attitude shift: “The time for feeling sad and saying it’s a deplorable state of affairs but not doing anything — that time is over now.”

Visit the Talking TB series for more coverage on how we can eliminate tuberculosis by 2030. The time for a paradigm shift and a renewed focus on funding, research, and global solutions is now. Join the conversation by using the hashtag #TalkingTB.