Where is civil society in the fight against TB?

The TB epidemic kills 1.8m people a year – fighting it requires huge social mobilisation on the scale of the battle against HIV/AIDS

Not only did the 43-year-old have a resistant form of TB which is difficult to treat, with severe side effects for patients, but he is also HIV-positive. But it wasn’t the HIV diagnosis that bothered him as much as the TB and the stigma that comes with it.

“I found out I had TB and it felt worse than HIV,” he told me. “I’m a person who can transmit, so I just stay at home. I visit my relatives’ house sometimes but I stay outside.”

I thought about the difficulties facing Saw and the other Burmese TB patients that I had met when I attended the World Conference on Lung Health in Liverpool in October. I attended with enthusiasm to report on new research that showed promising results in tackling MDR-TB, but also with the hope that the issue of stigma and how better to engage civil society in confronting it would be high on the agenda. Sadly I saw no evidence of the much-needed civil society response to TB.

According to the 2016 global TB report of the World Health Organisation (WHO), the epidemic is larger than previously estimated, with 10.4 million new infections in 2015, of which 60% were in India, China, Indonesia, Nigeria, Pakistan and South Africa.

The disease kills 1.8 million people each year – more than any other disease – and drug-resistance is on the rise in many countries.

The report also found that spending on TB this year fell almost $2bn (£1.6bn) short of the $8.3bn needed to combat the disease; this gap is expected to widen to $6bn in 2020 if funding doesn’t increase.

So why does the disease not get the attention it warrants? Why is there so much stigma around TB? And where is the civil society movement that we saw with Aids? When you contrast the extent of social mobilisation around HIV/Aids, the lack of civil society involvement in TB is striking.

In any country, whether it’s the UK, which recorded 9,000 cases of TB in 2015, or South Africa, which recorded 450,000, TB impacts the poorest and most marginalised groups.

“It’s so easy for people to say ‘this is a problem affecting people we don’t really care about’. If we don’t confront the epidemic, we will leave this infection to always fester,” Luis Cuevas, professor of tropical medicine at the Liverpool School of Tropical Medicine, told me.

As a prominent TB doctor whispered to me when we were discussing the lack of civil society representatives at the conference: “TB is a disease of the poor. The poor can’t afford to come here and protest.”

“The world is just letting people with TB down,” says activist Phumeza Tisile, an extraordinary young woman who was one of South Africa’s first patients to survive extensively drug-resistant TB – the most severe form of the disease. “TB is not sexy and most people who get cured don’t want anything to do with it once they get cured. We know TB affects those who don’t have money. We need to raise awareness.”

Part of that awareness-raising needs to address the issue of stigma which, if not tackled, will continue to kill patients before they’ve reached a healthcare centre.

TB stigma is driven by a range of factors, from fear of infection to the belief that the disease is associated with witchcraft. It’s also associated closely with factors that can themselves create stigma – from HIV, to poverty, drug and alcohol addiction, refugee status, homelessness and prison history.

Experts who have studied the disease believe campaigners need to learn from the way that HIV stigma was transformed.

“The HIV community has taken all of the negative energy and stigma about HIV and transformed into a force for change by engaging people with HIV and affected communities in the response right from the outset. The TB community is still struggling to find a ‘community’,” Dr Amrita Daftary, a social and behavioural TB researcher and assistant professor at McGill University in Canada, told me recently.

Dr Daftary wants to ensure that mechanisms are put in place so we don’t single out those who are already marginalised. She doesn’t want a TB ad or poster crowded with refugee faces that reinforces stigma, or daunting x-ray images which dehumanise TB. Instead, any adverts or posters should feature a diverse group of healthy individuals who have combated the disease. India, for example, uses Amitabh Bachchan – one of their greatest celebrities and a TB survivor – to champion the cause. We need more like him around the world.

Tisile agrees. She wants more people to speak out about the disease. She wants a civil society movement comparable to HIV.

“At first having HIV was shocking and people didn’t dare talk about it. These days people talk freely about their HIV status knowing there isn’t anything to be ashamed of. HIV got the world’s attention and activists went out there and demanded what is right. With TB, few people are willing to talk about it.”

Stigma can also be addressed by creating and expanding channels for the early detection of the disease. If TB testing is normalised and patients can begin the correct treatment without delay, they can quickly become non-infectious.

Looking ahead, we know what needs to be done. We need to invest in research and development; people need greater access to diagnostics, particularly for drug-resistance, and better treatments that are less toxic and more effective; and we need the international community to fund the fight against the disease fully. We also urgently need a civil society movement that will hold governments, agencies, the pharmaceutical industry and other organisations to account.

Source: The Guardian