‘My world looks like a TV with no signal after infection stole my sight’

At first, Louie Zepeda-Teng’s world turned blue. But as the bacteria enveloped her brain, resistant to the drugs pumping around her body, a circular haze cut off all but her peripheral vision. Soon, even that was gone. 

“This ball gradually grew and grew, until everything turned grey,” she says. “Now it’s like a television which has no signal – there are black and white dots where I used to see … it almost looks like a galaxy.” 

In late 2006, when Zepeda-Teng was a 24-year-old architecture graduate working in Manila, she contracted tuberculosis (TB) – an ancient killer still common across the Philippines. She deteriorated quickly; bar hopping with friends was traded for long nights in hospital as the infection escalated. Then bacteria had escaped her lungs and began attacking her brain as meningitis set in. 

Worse, the usual medicines were not working. By the time doctors realised the disease was resistant to the drugs they were using, Zepeda-Teng had lost her vision – and almost her life. 

“One doctor told me I was terminal … by this point I was almost in a vegetative state,” says the now 41-year-old mother of two. “My neurologist said my brain looked like Swiss cheese, full of holes where abscesses had grown.” 

At the time, the only cure available for multidrug resistant TB was a gruelling 24-month course of toxic tablets and painful injections, with a success rate of around 40 per cent.

For Zepeda-Teng, side effects included daily vomiting, acute bone aches and “paralysis syndrome” in her feet; others have experienced kidney complications, depression and damaged hearing. 

“Sometimes patients would say it’s too painful, we need to stop,” says Dr Maria Quelapio, a renowned TB consultant who’s mentor eventually saved Zepeda-Ting’s life. “We would have to say: it’s really a choice of getting cured by continuing; or stopping and having no side effects – but you will not [survive]. There were just no other options.” 

But now, 16 years later, a “dream come true” alternative is on the brink of a nationwide rollout.

In 2021, the Philippines was among the first countries to adopt a “revolutionary” new treatment for multidrug resistant TB, known as BPaL, in a pilot programme. And next month, it is set to be introduced in hospitals across the vast archipelago. 

“It’s amazing, to see a six-month treatment for drug resistant TB – it blows my mind,” says Dr Quelapio, who coordinated the initial use of BPaL in the Philippines. “Two decades ago, who would’ve thought it was possible? It was unimaginable… this is a dream come true.”

‘We were bringing old weapons to the fight’

Tuberculosis, which thrives in overcrowded, poorly ventilated spaces, has been killing humans for 9,000 years and remains one of the world’s deadliest infectious diseases: in 2021, 1.6 million people lost their lives globally and a further 10.6m contracted the disease, according to the World Health Organization (WHO). 

The emergence of drug resistance variants has been a problem since the first antibiotics were used against the pathogen in the 1940s. It occurs when the drugs are given incorrectly, taken erratically, or halted before the bacteria has been killed.

Though drug-resistant infections remain a small proportion of all cases, the high cost and long duration of treatment has a disproportionate impact on health systems and the survival rate is poor. In 2021, around four per cent of new TB cases were resistant to frontline antibiotics, but these patients represented 11 per cent of all TB fatalities, with close to 200,000 deaths. 

As in Zepeda-Teng’s case, part of the problem is in diagnosing resistant TB. In many places the technology needed simply isn’t available, so patients are misdiagnosed and given antibiotics which don’t work. But treatments for the various drug resistant strains have also been poor.

Since 2019, the standard option for drug resistant TB has involved taking five to seven antibiotics (up to 25 tablets) a day for nine to 18 months – as many as 14,000 pills in total. And even if patients completed the regimen (about one in seven never did) the cure rate was just 60 per cent. 

The new treatment – BPaL – is hardly a quick win but is a huge improvement. It pairs a new antibiotic called pretomanid with two other drugs and involves taking “just” eight tablets each day for six months. Nasty side effects, while still reported, are less common, and cost-analysis studies have found it’s as much as £9,000 cheaper per patient to roll out. Critically, it’s also more effective. 

“Our BPaL success rate is more than 90 per cent,” says Sandeep Juneja, senior vice president of the TB Alliance, a nonprofit which funded much of the BPaL’s research and development. “That’s huge, in terms of the number of patients successfully treated … if the treatment success rate goes up by 30 per cent, you’re talking about tens of thousands of people saved.

“We’ve been running very hard to stay in the same place … because we’ve been bringing old weapons to the fight,” he adds. “Then Covid happened and we went 10 years backwards. But I’m hopeful this shows the world it’s feasible to develop a new treatment for TB, a new approach that works.” 

Following a successful but small trial in South Africa, BPaL was granted limited approval by the US Food and Drugs Administration in 2019, when pretomanid became only the third new anti-TB drug to gain a regulatory green light in 40 years. The WHO soon followed suit, recommending a restricted rollout under “operational research conditions”. 

These guidelines kick-started TB Alliance’s project, Lift TB, which launched BPaL in pilot programmes across seven hard hit countries – including the Philippines. The southeast Asian archipelago has the fourth worst TB epidemic in the world with 740,000 patients, including some 20,000 with resistant infections. 

‘This is how the saved me’

As the coronavirus pandemic raged in 2020, Dr Irene Flores got a phone call: would her small TB clinic in San Fernando, a city a few hours north of Manila, coordinate the rollout? 

“I think no one else agreed to lead the research because they knew how much work it would involve at a difficult time – no one else was as crazy as me,” laughs Dr Flores. “But I felt it was important for [the Philippines] to be one of the few who took on the challenge.”

Her team was tasked with enrolling, treating and tracking 100 patients with multidrug resistant infections over two years in an operational research programme. At first it was tricky – many were apprehensive about signing up to such a new treatment, and Covid-19 forced many patient interactions online. 

But in May last year, the unit hit their target when Rosana Rodriquez became the 100th patient. The 59-year-old’s health had been deteriorating rapidly for weeks – her weight plummeting, cough deepening, and strength evaporating. 

When the doctors delivered her diagnosis, she was convinced her two children would soon be orphaned. It was less than a month since her husband Joey had suddenly died, and ‘multidrug resistant’ TB sounded terrifying.

“I just cried and cried, I was so scared,” says Rodriguez, perched on a plastic chair in her narrow kitchen in Bataan, a peninsular south of San Fernando. “I said: ‘Am I going to die? Please, I have children still in school, I can’t die. They need someone to take care of them’.”

But the doctors were unfazed. “They told me to have faith and said they could treat me, then offered me this shorter option. I felt lucky,” Rodriguez says. The drugs did make her vomit, and she initially struggled to swallow the chunky pills, but within two months she started to feel more alive. After three, she was “strong enough to scold” her nephew again and, by month five, the bacteria had been cleared from her system. 

She pauses her account and disappears next door, returning a moment later with a paper bag stuffed with medical records, test results and empty pill bottles. “Look, this is how they saved me,” Rodriquez says, unpacking the remnants of her treatment across the kitchen table. “This is why I’m still here for my children.”

‘A year of change’ for the Philippines

For Zepeda-Teng, listening to these stories is bittersweet. “When I think of all the nasty side effects I experienced, and I hear that people don’t have them any more, of course I’m envious,” she says.

But despite losing her vision, Zepeda-Teng hasn’t slowed down. Since 2007, she has finished a masters in public policy, had jobs at organisations including the WHO, and given birth twice (after her husband proposed to her during an interview on live television).  

Then in 2020, she launched a survivors group in the Philippines, TB People, to advocate for resources and a “people-centred” approach to treating the deadly bacteria – something she will be championing at the UN General Assembly in New York this week.

“In a way I [still] see my role as an architect,” she says. “If I can’t design buildings anymore, I can design this master plan to improve the way we treat people.”

That includes championing patients during the nationwide BPaL rollout, set to launch after the government releases its new treatment strategy in mid-October. 

This follows WHO updated guidelines in late 2022, which recommended BPaL for all multidrug resistant infections and paved the way for the drugs to be widely used across the globe. This year, it was also added to the UN agency’s essential medicines list, and at least 40 countries have now approved it.

The Philippines rollout comes at a critical moment for the country, as external financing from the Global Fund is falling and the government is decentralising multidrug resistant TB care – asking all clinics, not just regional specialist centres, to treat patients. 

“This is a year of big change for the Philippines … and it will be a challenge to fill funding gaps,” says Dr Quelapio, adding that there are concerns about constraints in some regions, from a lack of trained nurses to limited resistance detecting machines.

But Dr Quelapio, who was part of the first team to run a pilot programme treating multidrug resistant infections in the late 1990s, remains optimistic.

“We can now say we have a tolerable treatment with limited side effects for multidrug resistant TB. That was once unthinkable,” she says. “And I’m hopeful treatments will now become shorter and shorter.” 

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