We Eradicated TB, But Poverty Brought It Back. Will Covid Be The Same?

Tuberculosis was a Victorian illness, but people are still suffering with it. We spoke to a survivor and the people who saved his life.
Stevie Miller
Stevie Miller

Stevie Miller had been suffering from a nagging, hacking cough for about a year when the blackouts started.

He’d stand up and suddenly crumple in a heap on the ground, then come to moments later feeling dazed, with no clue about what had just happened. He began to experience these episodes more frequently, up to several times a week.

By this point, Stevie had grown accustomed to feeling miserable – most days he was cold, tired, hungry and weak. “I felt run down every day,” Stevie said. Since 2010, he’d been living homeless on the streets of east London, sleeping on park benches and under market stalls, in squats and abandoned buildings, in shipping containers and church halls.

Getting sick was inevitable. “You just cannot look after yourself in a healthy way,” Stevie said. “A lot of it is to do with your mental state and the insecurity of not knowing what is next. It wears you down, and you don’t look after yourself properly, and end up getting ill.” That’s why, when his cough first started, Stevie hardly gave it a second thought.

Mostly, he was grateful that he had a roof over his head, albeit a temporary one. In the winter months, as the weather began to turn cold, the charity North London Action for the Homeless found Stevie shelter in churches around Hackney. He spent each night huddled on a mattress in various church halls, together with dozens of other homeless people.

“I would be lying inches away from the next person, and all around you would hear people coughing, snoring and talking in their sleep,” Stevie said. Soon, his coughing would echo theirs.

“A lot of it is to do with your mental state and the insecurity of not knowing what is next. It wears you down, and you don’t look after yourself properly, and end up getting ill.”

- Stevie Miller

The blackouts were something new, however. When Stevie collapsed on the street one afternoon in 2013, concerned bystanders called an ambulance, and Stevie was rushed to Homerton Hospital. It turned out the blackouts were caused by salt deficiency and hypertension, but doctors were suspicious about his persistent cough and referred him to the respiratory clinic. Tests revealed that his cough wasn’t simply the byproduct of an ordinary cold. Stevie had contracted a disease that was more commonly associated with life in the 19th century: tuberculosis.

TB is a bacterial infection spread through the air when infected individuals cough or sneeze. It spreads easily in crowded areas with poor ventilation, and among individuals who have compromised immune systems that aren’t strong enough to fight it off.

Stevie, now 69, can’t be sure exactly where he contracted TB. One of the church halls he slept in during the bleak winter months is a likely source, but he could have been exposed in some other cramped and crowded place where he sought shelter together with other homeless and vulnerable people.

“It was inevitable that someone in his situation would get TB,” said Sue Collinson, a specialist TB care worker at Homerton Hospital who looked after Stevie. “The risk factors for homeless people catching TB are significant, compared to the normal population.”

If left untreated, TB can be life-threatening, and even delays in treatment can have a devastating impact on a person’s health. Globally, TB kills more than 1.6m people a year—more than HIV and malaria combined. It is most prevalent in countries such as India, Pakistan, China, Indonesia, Nigeria, Bangladesh, the Philippines and South Africa.

Tuberculosis used to be widespread in the UK as well. During the Victorian era, it was a leading killer, responsible for 40% of all deaths among working-class people in cities. Literary greats such as Robert Burns, Elizabeth Barrett Browning and the Bronte sisters all died from the disease.

This 1966 image made available by the Centers of Disease Control and Prevention shows a chest x-ray of a tuberculosis patient.
This 1966 image made available by the Centers of Disease Control and Prevention shows a chest x-ray of a tuberculosis patient.
ASSOCIATED PRESS

But the publication of William Beveridge’s landmark 1942 report on the five “giant evils” plaguing society – want, disease, ignorance, squalor and idleness – was a major turning point in the fight against disease and poverty in the UK.

Beveridge proposed the creation of a free health service accessible to all; he wanted disease banished by defeating social injustices. His report laid the groundwork for the NHS and comprehensive social services, including TB screenings and vaccinations. As living standards improved during the 20th century, the death toll from TB began to fall, and by the 1980s the disease had been all but eradicated in the UK.

Since then, however, tuberculosis has surged back in in Britain, jumping to a 30-year high in 2011. And while increased disease monitoring efforts have brought rates back down, people like Stevie highlight the fact that even today there are pockets of extreme poverty where diseases like TB can thrive.

“TB loves austerity,” said Collinson. “TB is quintessentially a social disease that really thrives on deprivation, poverty, overcrowding, social inequalities and generally affects the most vulnerable people in our society.

“In this modern 21st century, when we are the fifth-largest economy, we should not be having people infected with these things.”

“TB is quintessentially a social disease which really thrives on deprivation, poverty, overcrowding, social inequalities and generally affects the most vulnerable people in our society.”

- Sue Collinson

The time is now ripe for a new Beveridge-style approach to reduce inequalities in the wake of the coronavirus pandemic, says John Ashton, former president of the UK Faculty of Public Health and former chief of the UK Public Health Association.

He told HuffPost UK the virus had highlighted gross inequalities, hitting the most disadvantaged people the hardest.

He fears things will get worse as the second wave continues to grip the nation.

“We are more likely to see deaths among younger people suffering from health conditions and it will take an even more disproportionate toll on the most disadvantaged communities, particularly in industrialised northern cities.

“I think we are going to see a new era coming out of the pandemic and a desire to reduce these gross inequalities. We need a society where no one has too much or too little.”

Stevie Miller
Stevie Miller

Stevie had been living in east London for almost 30 years before he became homeless. He was born in Alaska in 1951. His father was in the military, so he travelled a lot as a child. Stevie began studying languages at the University of South Florida with the idea of becoming an interpreter. However, he dropped out after a year – captivated, he said, by the “1960s hippy lifestyle”.

In the early 1980s, Stevie began working as a production manager for fringe theatre productions off Broadway in New York and went touring for five years with a group of English producers, visiting Holland, Germany, Canada and the UK.

In 1986, he met a British woman named Jane in London after she attended a theatre performance. They got married in the US a couple of years later and settled in a rented flat in Shoreditch. For the next two decades, they made a life for themselves in London – Jane running a business buying and selling antiques and Stevie continuing to work in the theatre industry, making frequent trips between New York and London.

In 2009, however, Jane became ill with vascular dementia and liver failure, and she died just a few months later in summer 2010. Stevie’s life quickly unravelled, and he ended up homeless and stateless. “I found it very hard to cope after Jane died,” Stevie said. “The flat we were living in was rented, and I was evicted, as I was a US citizen and didn’t have any rights to anything.”

Stevie sofa-surfed for a while but soon hit the streets and ended up sleeping rough for about three years. It was then that his health began to decline and he took to drinking heavily. “It is not easy living out there,” Stevie said.

Particularly during winter, the concentration of homeless people in makeshift shelters creates the ideal conditions for TB to spread. “People who are homeless and on the streets don’t often realise how unwell they are, as they are used to feeling terrible all the time,” Collinson said. “Then when these people gather together in places with poor ventilation, people cough and everyone breathes it in. TB thrives on people’s misery.”

There were 4,655 TB cases in England in 2018, and the rate of TB among the most deprived 10% of the population is six times higher than among the least deprived 10%. Some 13% of people with TB have at least one social risk factor, such as homelessness or a history of substance misuse. TB also remains concentrated in major cities, with London experiencing more than a third of all UK cases.

“There is a huge disparity between people with fabulous salaries living in luxury and those on the breadline, struggling to make ends meet,” said Ashton. “Poorer people have not been protected against the problems caused by austerity.”

Stevie Miller

Stevie likely would have died from TB had he not blacked out and been rushed to hospital. Doctors put Stevie on a strict regime of antibiotics for a year, which required him to take up to 15 tablets a day.

Just as homelessness made him susceptible to the disease, however, it also presented a challenge to his recovery. TB typically requires patients to undergo at least six months of treatment, and it can be very difficult for people in unstable housing situations to maintain regular treatment over a long period of time.

“If you have someone with a chaotic lifestyle and social risk factors such as being homeless, it is more challenging to treat them,” said Mike Mandelbaum, chief executive of TB Alert, the UK’s national TB charity. “This is one of the things that has resulted from increased austerity and the rising number of people who are street homeless.”

Stopping TB treatment prematurely can be extremely detrimental. Patients often start feeling better after the first few weeks of treatment, and it can be tempting to stop taking their medication at that point. “It is quite easy for people to think: ‘These drugs are horrible – I’ll stop taking them,’” said Mandelbaum. “But it is critical they carry on taking the medication as otherwise they will get ill again and the TB will take 18 to 24 months of treatment if it comes back as multi-drug-resistant TB.”

As Stevie’s case worker, one of Collinson’s top priorities was to get him off the streets and into a stable living situation. “Once we get them housed, we can keep them on treatment,” she said of homeless TB patients. The TB team has a scheme with the local authority where homeless people with TB are fast-tracked into temporary accommodation. Following his TB diagnosis in 2013, Stevie was given emergency accommodation of a room in a hostel, where he stayed for the next few years.

“Not only are we curing the individuals, we are also preventing onward transmission of TB to stop them infecting more people,” Collinson said.

Sir William Beveridge’s report on social security laid the foundations for the creation of the NHS
Sir William Beveridge’s report on social security laid the foundations for the creation of the NHS
ASSOCIATED PRESS

Beveridge recognised the importance of access to health, medication, accommodation and opportunities for all – which paved the way for the modern welfare state. Now, says Ashton, we need a new solution to tackle the societal ills that exist today.

“The ability to progress has been snatched away from poorer people, and the ladder of opportunity has been taken away from them,” he said. “We need a commitment to fund a fairer society, and there is a growing public feeling that better-off people who are earning a lot of money should pay more tax, and people at the bottom should be supported more.”

Because Stevie is a US citizen, however, he had no automatic right to welfare support in the UK, and Collinson feared he would end up on the streets again once his treatment was finished and his right to stay in temporary housing expired.

She sought pro bono legal advice on his behalf from an immigration specialist and found that if Stevie could demonstrate 20 years of continuous residence in the UK, he could qualify for leave to remain and the right to access welfare benefits.

Collinson managed to track down some of Stevie’s records and personally wrote to the Home Office explaining his history and why some documents were simply unobtainable. As there was no official proof of where Stevie had been for the last 30 years, Collinson went to great lengths, gathering personal letters from people like church staff, newsagents and Stevie’s friends to support his case.

“I got together all these scrappy bits of paper and sent them all to the Home Office. Luckily, they made a humanitarian decision, and we managed to get him leave to remain for 30 months. However, he has to keep re-applying every few years for 10 years.”

When asked why she went to such efforts to help Stevie, Collinson shrugged and said: “It’s my job.” She added: “I am a firm believer in social justice, and I feel there are such failings in society and these are people who are so much worse off than me.

“Working with individuals like Stevie and helping them makes me happy.”

Stevie Miller
Stevie Miller
Sue Collinson

Today, Stevie lives in a one-bedroom flat in Dalston in an over-55s retirement community. He is registered with a GP and quit drinking after going through a recovery programme soon after his TB diagnosis. At 69, he says although he would be happy to work, no one wants to employ him because of his age. Apart from some scarring on his lungs, he is now cured of TB.

During the first coronavirus lockdown, Stevie felt even more grateful that his collapse led to him being rescued from his life on the streets – and firmly believes it saved his life.

“Sue Collinson helped me get my identity back and followed up on me every step of the way,” Stevie said. “Ironically, blacking out on the streets and being diagnosed with TB ended up saving my life. I honestly think I would have wound up dead.”

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