Radical thinking to eliminate TB in Indonesia

“If you see TB patients every day and talk to them, then you won’t dare to leave them – you always want to help them,” says  Erlina Burhan, M.D., M.Sc., Ph.D. “And in Indonesia we’re ranked second after India, with 969,000 new cases every year.”

Burhan is a pulmonologist based in Jakarta, the second most populous city in the world, with an estimated 35 million people living in its wider urban area. She works at the busy Persahabatan hospital, a specialist facility for respiratory diseases, and is also a respiratory infection consultant at Universitas Indonesia’s renowned Faculty of Medicine. She’s even launched her own YouTube TB channel. 

Her first contact with TB patients, however, came after finishing med school when she was sent to a remote area in West Sumatra to work in primary care, and she later carried out TB research in Namibia as part of her master’s degree. This is where she “really started to know the magnitude,” she says. “I realized that this really is a global problem.” 

Although preventable and curable, TB is one of the world’s deadliest diseases, killing some 1.4 million people a year. Almost 90% of new TB cases in 2020 occurred in 30 high-burden countries. Around half are in South-East Asia, and Indonesia is one of just eight countries that together account for more than two thirds of the worldwide case total. Despite this, the aim is still to achieve elimination by 2030.

While it can be done, says Erlina, it will need some radical thinking. “After 30 years of being a doctor and seeing TB patients, what we’re still doing is business as usual,” she says. “We’re still focusing on detecting active cases and treating them, but we’re not putting the effort into prevention. That’s really the big challenge – we need to change our way of thinking.”

Changing the standard way of thinking

Increasing access to testing and treatment of latent infections can not only halt the cycle of transmission – it’s also far simpler and more cost effective than treating the active disease. Successful elimination in Indonesia will be based on four pillars, Erlina states – collaboration, innovation, intervention and implementation.

“In ‘business as usual’, TB is always the business of medical people, but probably 60% of the problem is non-medical,” she says. “We can diagnose and treat, but if the patient doesn’t have money to come to the hospital we can’t do anything about it, or if they don’t have food at home for good nutrition.”

“Then if people stop the treatment, we can’t go to everyone’s house and tell them to take the drugs,” she adds. “So we need collaboration between medical stakeholders and non-medical stakeholders, and in this we should learn from COVID. During the pandemic there was massive collaboration – government, non-government, medical, educational, business. But,” she says exasperatedly, “they don’t do this with TB.”

One very obvious example is with vaccines, she says. “There’s been no new vaccine since BCG, which dates back more than 100 years. The COVID pandemic started in early 2020 and by the end of the year a new vaccine was already developed. Donald Trump got his first jab in January 2021,” she laughs, “and so did I.” And this all came about via the collaboration of countless different stakeholders, she points out. “Why can’t we do that for TB? It should now be a top priority.”

Jealous of COVID

The same is true when it comes to innovation, she argues. “I’m very jealous of COVID! Because there were so many innovations – technological, digitalisation, everything. You can do real-time reporting and know how many people got COVID every day, how many were being treated, how many were cured.

There isn’t the same kind of innovation and technology for TB. But if you have innovation, you have to know how and where that innovation should be introduced.”

This is where the intervention aspect comes in, a vital element of which is high quality mapping, she states. “I was amazed with all the COVID mapping – we knew the mutations, the new strains in each country. That hasn’t happened with TB. And the last one is implementation.

I’ve seen a lot of good guidelines, but the weakness is with implementation. So – collaboration, innovation, intervention, and good implementation. If we can have these four then I’m very optimistic that we can end TB.”

One major problem, however, is that Indonesia hasn’t been prioritizing prevention nearly enough, she says.

“I keep saying this! Where is the preventive therapy? People aren’t being diagnosed, and with healthy people we need to do prevention measures so they won’t get infected. The focus is on active TB, but there are people with latent infections who need to be found, diagnosed and treated. That’s the trick if we want elimination.”

Dealing with a stigma

Erlina and her colleagues use QIAGEN’s QuantiFERON-TB (QFT) range to accurately diagnose latent cases, and once found these people should be receiving treatment. Unfortunately, however, there’s always been a significant stigma around the disease that can discourage people from completing their treatment once diagnosed, or even getting tested in the first place.

Is there any sign that this is improving at all? Erlina closes her eyes, and shakes her head ‘no’. “I feel really, really sad about this,” she says slowly. “People will still say things like, ‘Don’t be friends with that family’.

Many people think TB is inherited from parents, and TB patients can also stigmatize themselves. They stay in the house, they don’t want to meet people, they don’t want be known as a TB patient. The stigma really needs to be eradicated.”

This can be achieved through a campaign of awareness-raising and education, she believes, including getting survivors to tell their stories. “We need those success stories, and we also need to involve other people – influencers, artists, famous people – to urge people to know their status and get tested if they have symptoms.”   

Stigma is of course also a significant issue for people with HIV, and there are major problems of co-infection with HIV or diabetes among TB patients in Indonesia. While official guidelines state that anyone living with HIV needs to be tested for TB and vice versa, implementation in the field “is not that easy”, Erlina points out.

“People will say, ‘I don’t have symptoms’, so again, education is very important. You have to spend time with them and explain that their immunity is very low so it’s easy to catch TB.”

Not all health providers are screening for TB among diabetes patients either, she says, and there’s also a challenge around older people with TB. “Maybe they already had latent TB in their good years, but as they get older and their immunity is declining then it becomes active TB. So we have to work on higher-risk populations – not only finding them but making sure they’re getting treatment – HIV, diabetes, the co-morbid, the elderly, children under five.”

Educating the future population

Children are a key population in the fight against TB – of the more than 10 million people worldwide infected in 2021, an estimated 1.2 million were children. Despite this, however, around half of infections in the under-15’s remain undiagnosed and unreported. According to UNICEF, in 2019 less than 10% of under-5’s in Indonesia living in the same house as someone confirmed to have TB were on preventive treatment.

Part of the problem here is access to diagnostics, as IGRA blood tests have so far been mostly confined to the big cities, although they’re becoming more widely available now. “So it’s a dilemma. Children under five are not good at expectorating sputum, so you need proven infection by skin tests or IGRA.”

The symptoms are also different with children and adults, she points out. “With children, coughing isn’t the predominant symptom. It’s things like not gaining enough body weight, not being as active as they should be, or maybe a mild fever. These are often overlooked by parents or medical staff, so finding TB in children is a challenge.”

Another major hurdle for Indonesia’s drive towards elimination is drug-resistant TB, one of Erlina’s specialisms. Part of tackling drug-resistant TB again comes down to simply finding the people, but that’s followed by the challenge of persuading them to start treatment – something that only an estimated 75% of those with drug-resistant TB actually do.

“The others refuse, they deny, or it’s because of the stigma or economic problems, or they’re afraid of the side effects,” she says. And of those who do enrol in treatment, only around half see it through to the end. “So the others get worse, and they’re spreading the disease to other people if they inhale the mycobacterium.”

Coming back to her first love - TB

“We have all these slogans,” she says. “Last year it was, ‘Invest to end TB’. Now we have, ‘Yes, we can end TB.’ But it’s just a slogan, it needs to be followed by action – and systematic action. There are so many players in TB but still not much collaboration, so you still have people duplicating what other people are doing.” And the final key element is to keep hammering the prevention messages home, she states. “We need to tell people that by curing one person we can protect thousands of people around them. If 1% have TB in your community, then you’re still not safe. No one’s safe until everyone’s safe. But we’re getting there.”

So in the face of what must often seem like a relentless uphill struggle, what drives her to keep going? “I can’t look the other way,” she says. “I really want to help. And you have to be in the field. Then you’ll know their problems, especially the stigma. I have patients who’ve been divorced by their spouse because they have TB.”

How does something like that make her feel? “I can’t tell you what I think about people like that,” she says. “You’re recording me!” The other side of that coin, however, is the feeling she has when she can finally tell someone they’re cured. “I can’t describe how happy I am when I see their face. It really touches me. And it really makes me nervous when a patient doesn’t come back, because then I can’t do anything for them. It makes me mad.”

“So you see,” she sighs. “I can’t get away.” And all this passionate commitment has definitely been worth it, she says. “I would say tuberculosis is my first love – in the last three years I’ve been busy with COVID, but that’s just an affair,” she laughs. “In the end you have to stop the affair and go back to your first love.”