Finding the hard-to-reach TB patients in Pakistan

These mine shafts can collapse at any moment. The hills are part of Pakistan’s Salt Range, where over 60 people are estimated to lose their lives each year in mining accidents.

In this same district, only a few months earlier, a mine collapsed, killing four people.

And it’s within these tunnels that the world’s deadliest infectious disease, tuberculosis, has ideal conditions to spread — in poorly ventilated, crowded spaces. 

The lungs of coal miners are often already damaged from diseases such as silicosis, which is among the strongest risk factors for tuberculosis and increases the chance of death when the disease is contracted.

While TB is preventable and curable, many people die without diagnosis and treatment.

Pakistan is one of the world’s high-burden TB countries, with a national TB incidence of about 277 cases per 100,000 people annually and about 133 deaths per day.

Dopasi Foundation’s screening initiatives found an even higher incidence rate among coal miners — about 400 cases per 100,000 people.

In Pakistan, it can often take people months before they receive a diagnosis, said Annum Aftab, senior manager at international nonprofit IRD Global. Her organization is also an implementing partner of TB REACH, and its work includes bringing mobile clinics to other hard-to-reach communities. 

“With these services, we're able to bring the X-rays to their doorstep and cut down that time lag between the screening and the diagnosis step to find out if they have TB or not, and then immediately also get them linked to treatment,” she said.

Pakistan has served as an experimental ground to find creative ways to find hard-to-reach TB patients. And it’s paid off.

Programs rolled out in Pakistan and in other TB REACH countries have influenced the World Health Organization’s recommendations on using computer-aided detection software for screening and triage of TB, which ultimately helps expand the use of these techniques globally.

For 43-year-old Tariq Irfan, entering the mine is like a near-death experience.

He feels like he’s suffocating and vibrations pulse through his body — as fellow miners chip away at the walls.

His work is guided only by a light propped on his forehead.

When he’s filled the sacks on a donkey’s back with coal after about 40 minutes, he treks through the tunnel toward the light.

At first it’s blinding, but it’s only when he emerges that he feels like he’s living again. 

His grandfather and father, who both migrated from India to Pakistan, were coal miners.

Irfan started this work when he was around 13 years old. He makes about $5 daily, depending on the amount of coal he hauls from the mine.

He’s married and has two children. But his life hit a major roadblock about three years ago when he developed a persistent cough, shortness of breath, and loss of appetite. 

It lasted about three months but he was anxious about visiting a health facility, as many miners are. He feared a diagnosis could cost him his job — there are younger, healthier men eager to replace him.

Trekking long distances to a health facility also means a lost day's wages. 

But the Dopasi Foundation was hosting a TB testing camp dedicated to coal miners a stone’s throw away from his mine.

It was in partnership with the mine’s owners — and Dopasi negotiated assurances that those who tested positive would maintain job security and get several weeks of paid leave.

They would also be granted the ability to take time off work monthly to visit the government health facility to pick up medicines and undergo follow-up testing.

And so Irfan started a 6-month treatment plan, in regular consultation with the Dopasi team.

Much of the coal from Pakistan’s mines is loaded on trucks and shipped to the nation’s brick kilns — which are then used to construct buildings across the country. 

There, the mud is mixed into clay, shaped, and moved to the kiln for cooking.

It’s dusty and dangerous work — the bricks are stacked and covered with dirt, but can collapse, causing accidents where workers fall into the scorching kiln.

Brick kiln workers are also at high risk of lung damage from prolonged exposure to dust, smoke, and toxic fumes, which predisposes them to TB.

These occupational hazards combined with malnutrition and limited access to health care significantly elevate their vulnerability.

These workers tend to earn less than coal miners. Their wages also depend on their production, and they risk falling into spiraling debt.

When they need a loan, site supervisors provide it with interest and forbid them from seeking employment elsewhere until it’s paid off. 

Finding the hard-to-reach patients is a priority of the Stop TB Partnership’s TB REACH initiative. Pakistan has been a recipient of over 20 of its grants — with three partners in the country: Dopasi, IRD Pakistan, and Mercy Corps. 

Dopasi’s work is guided by hot-spot mapping identifying high TB burdens across the country. Beyond its work in coal mines and brick kilns, Dopasi provides pop-up free screening camps for other populations with limited health care access such as prisoners, refugees, and the transgender population. It is now also initiating work in cement and cotton ginning factories. It also provides at-home care for drug-resistant TB patients, who have a longer, more complicated treatment plan.

It is also starting to screen for more than TB — the AI software the organization is using can screen for diseases such as silicosis, asbestosis, pneumonia, and lung cancer. 

One of the great successes coming out of the Stop TB REACH initiative in Pakistan is the role these programs have played in serving as a model for the use of active case finding in high-burden TB countries rather than passively waiting for symptomatic people to come to clinics, TB REACH’s Kirubi said.

Pakistan was one of the leading countries for experimenting with how to do this for TB starting in 2010, she said. 

This started out with health workers venturing into the communities to ask about symptoms such as cough and weight loss — encouraging people to come to a facility to get an X-ray when needed.

It evolved into using generator-powered X-ray vans.

Then Dopasi began the world’s first deployment of ultra-portable X-rays for TB screening in 2019. This is ideal for places the vans can’t reach and that don’t have electricity.

A portable X-ray can be taken up cable cars in the mines and on motorbikes to remote areas on rough terrain. 

It’s important to find TB cases early, Kirubi said. This is because by the time someone with TB makes it into a facility on their own, they are more likely to have severe disease and have already spread it throughout their community.

An early diagnosis means there are less complications, outcomes are better, and it's less costly, she said. 

Studies from TB REACH projects have shown that active case finding provides economic benefits both to health systems and people affected by TB, Kirubi said. Smaller studies in Nigeria and Zimbabwe reveal that active case-finding interventions are particularly cost-effective when combined with community-based X-ray screening.

Additionally, research in Vietnam and Nepal showed that active case finding reduces the financial burden on people with TB, lowering the proportion of households incurring catastrophic costs — spending more than 20% of household income on TB-related expenses, Kirubi said. 

And the work in Pakistan has also influenced global norms in other ways. In 2021, WHO published a new recommendation on computer-aided detection software for TB screening and triage.

This software uses AI in place of human readings of chest X-rays to produce abnormality scores to identify possible TB cases that need further testing — which TB Reach has already been doing. 

“The findings from TB REACH projects contributed to that discussion, alongside data from other sources,” a WHO spokesperson said.

This is a big deal, Kirubi said, because once WHO issues guidelines, many high-burden TB countries will incorporate them into their national strategic plans. This opens up domestic funding and funding from external donors such as the Global Fund to scale up nationally. And that’s what has happened.

“The main success for us as TB REACH is when an intervention is taken up for financing by other donors on a large scale,” Kirubi said.

Ul Eman said that Dopasi presented its findings around using the ultra-portable X-rays at various meetings and conferences, which also helped spur global adoption. She said that over 30 countries now use this technology.

A study carried out in northeast Nigeria that was funded by TB REACH and published last year found that ultra-portable chest X-rays can provide “more efficient TB screening in hard-to-reach areas.”

This is opposed to screening patients verbally for symptoms, which misses a lot of people with TB. Using AI to read the scans “can improve triaging when human readers are unavailable and can save expensive diagnostic testing,” it said. 

Another success story from Pakistan is the work Dopasi has done in partnership with private pharmacies.

Many Pakistanis who are sick with TB seek care at private pharmacies that are not affiliated with the government. While these pharmacies provide medication, the patients' cases are not documented in national health records.

Dopasi started to work with private pharmacies to make sure such cases were reported to the government and that anti-TB medications were sold without profit. Through this, Dopasi pioneered the digitization of TB case notifications through pharmacies, as well as digitizing data around adherence to drug resistance TB treatment.

Dopasi has since received funding from the Gates Foundation to scale up this work to 57 districts, with plans for national expansion.

The Stop TB Partnership is not like the average donor in terms of its appetite for experimentation — it gives money to local organizations and allows them to explore new innovative approaches.

It isn’t constrained by WHO guidelines as to what it can fund, and it allows implementing organizations to take new risks, while it monitors the results. 

“We give them that space where they can try out new approaches, with the idea that if this is possible, then it can be scaled up elsewhere, and maybe shape policy,” Kirubi said. “Some of them will work, and some of them won't work.” 

Ul Eman credits the TB REACH initiative for granting her organization the ability to “challenge the status quo” and having “enough courage to invest in such wild ideas” such as bringing X-rays to people, she said. 

But ultimately, ensuring the sustainability of these efforts is a challenge for all things in global health, Kirubi said. 

Receiving input from the people managing the government’s TB programs and the communities themselves from the onset to co-create the design of programs helps do this, Kirubi said.

And hopefully there will be demand within communities for these services — because governments respond to demand, Kirubi said.

“We try not to have tools that are linked to highly technical laboratory situations. We want tools that can be used either at the point of care, which could be at the smallest facility, or in the community,” she said. “We are looking at what is the less costly option, because the more complex it is, the more expensive it is.” 

On a recent afternoon, hundreds of miles away from Irfan’s coal mine, 34-year-old Anila sat in a community center in Ditto Kalro in Sindh province surrounded by a group of women from her village.

It’s a community action group set up by IRD. The nonprofit has set up groups like this to educate people about TB, among other things, and as a place where people can talk about their experiences and dispel myths about the disease.

These groups also inform people about upcoming health pop-up camps in rural areas where they can be tested.

Women are a hard-to-reach group affected by TB in Pakistan, especially in rural areas.

One reason is that many face movement restraints — they must get permission from and be escorted by a male family member to access services. 

“A lot of this can be attributed to access issues, as well as just generally cultural norms and restrictions around women being not able to go to seek help services on their own — needing a male chaperone,” IRD’s Aftab said.

This is coupled with other challenges such as long distances to health facilities. 

These groups work with men in communities to raise awareness around their upcoming camps so that they have trust in the services and are willing to send women and girls to them.

There is a quicker turnaround at a camp as opposed to heading to a health facility further away — so a woman won’t be away from home as long. 

The camps have generator-powered mobile vans with X-rays that use the AI software to interpret whether it's a probable case, and the actual Gene Xpert machines for testing sputum.

This means the health workers can test people on the spot and give people the results within hours. 

“This machine's turnaround is like one to two hours, which is fantastic, because normally this process could take weeks or months,” Aftab said.  

IRD, in partnership with the Communicable Disease Control Singh, is also working to integrate other services into these camps. The Gene Xpert machine also tests blood for hepatitis C. Pakistan has the highest burdens of this disease in the world — fueled by the reuse of syringes during medical injections. 

The camps also screen the mental health of the attendees who are presumed to have TB and hepatitis C based on the screening tests and have a counseling tent for those who need care.

IRD also plans to add testing for chronic respiratory diseases to their camps in the coming year, with the help of another round of funding by the Stop TB Partnership.

“People can come and get screened for multiple diseases in one spot, and to make it as accessible for them as possible, as close to their homes as possible,” Aftab said. 

They screen about 180 people a day.

IRD also has a mobile clinic that brings a medical doctor and treatment coordinator directly to remote or hard-to-reach villages for those that have already tested positive and are undergoing treatment, so that their follow-up appointments can be as close to their homes as possible. 

Anila, the community action group member, is a survivor of TB. Four years ago, she visited many doctors before she got a diagnosis and faced unnecessary isolation and stigma when she was on treatment.  

But she’s working to change perceptions around TB, which is why she joined IRD’s community action group. This model was piloted by the endTB Project and published as a case study by WHO.

She always wanted to be a doctor since she was little, but she didn’t have access to education to fulfill that aspiration.

She said she’s thankful to play the role of a community action member because she feels like she's become half of a doctor and has been given the opportunity to help others in her community.