Tuberculosis in the UK: Being diagnosed with the 'Victorian disease' that 'never went away'

A London Assembly report recently revealed that five boroughs in the capital had higher rates of tuberculosis (TB) than parts of Rwanda, Iraq or Eritrea. And last year, TB Alert recorded 6,520 cases of the disease in the UK - of which almost 40 per cent were in London alone.

“TB never went away,” Helen Clegg, of charity TB Alert, explained. “There was some misconception that it had been eradicated but that has not been the case.”

Clegg works for one of the UK’s only national TB charities, helping to provide support to people such as masters student Josie Garrett, 24, who contracted TB from her boyfriend while an undergraduate at Brighton University.

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“Shock was the reaction of everyone,” explains Garrett, who was diagnosed with Isoniazid resistant pulmonary TB, a single drug resistant strain, in July 2013. She spent two years shuttled in and out of hospitals, as complications from the TB gave her everything from hepatitis to neutropenia, removing all of her white blood cells and nearly killing her.

Prior to her diagnosis, and despite her boyfriend’s illness, Garrett admits she had a “very limited understanding” of the disease. “I had the normal perception in this country of it being a Victorian illness.”

TB, once referred to as consumption, is caused by the bacteria (mycobacterium tuberculosis) that frequently - although not always - targets the lungs. A third of the world’s population, according to the Centre for the Disease Control and Prevention (CDC), carries the disease in its a latent guise - of these, roughly 10 per cent will go on to develop the active form.

It is treatable, but access to medication means TB remains one of the world’s biggest killers. The World Health Organisation (WHO) says the disease was responsible for 1.5 million deaths last year - making it a bigger killer than HIV/AIDs. It is especially deadly for those with compromised immune systems: without proper treatment WHO estimates nearly all HIV-positive people who contract TB die, while around 45 per cent of those without pre-existing medical problems also succumb to the disease.

The disease is airborne, and can only be passed through sustained contact- it cannot live on surfaces, for example.

Garrett caught a drug resistant variant of the disease off her boyfriend, who in turn contracted his from a family friend in Deptford - who took his from his father, who contracted it in the nineties in India. The initial stages of her boyfriend’s illness were terrifying, she says. “He was having night sweats and coughing up blood…It was horrible.”

While Garrett claims she was “very lucky” with both her form of the illness and her treatment, she says ignorance around the illness is widespread. “People’s understanding seemed incredibly varied,” she said. A former flatmate, “got confused and I found out that he had been telling people I had the bubonic plague.” Others were much more understanding - especially as her social and work life completely vanished under the strain.

“There were points when I was hospitalised every day,” she said. “If they hadn’t caught the TB early in me [before her immune system was damaged]…then it could absolutely have been life threatening.”

Despite the severity of the London Assembly’s report, TB treatment in the UK has remained a seemingly untouched backwater of medical research for decades. After rates of TB hit their lowest levels in the UK during the eighties, the numbers climbed back up. In 2011, there were 8,963 cases reported - a number that has dipped now, but campaigners and patients claim the NHS and healthcare professionals are still not doing enough.

“We have this stigma about it, we don’t have enough funding of new drugs and it is very difficult,” says Steve Bradley, 52. A former Tube worker who then went into project engineering, Bradley does not know when he contracted the illness, but returned from working in Australia in 2008 and found himself hospitalised in A&E intensive care for ten days. Eventually, they found he had TB in the lymph nodes and it was “OK”, until they started treatment.

“One of the drugs took the nerves away from my hands and feet, one of them [Ethambutol] damaged my optic nerve, so I was registered blind after two weeks - going from 20:20 vision to not being able to see.

“It was a little bit traumatic,” he says in a quietly resigned understatement. Bradley, who can no longer work as a result of his TB, helps TB Alert as a member of a peer-to-peer support network. In the past few years, he claims the proliferation of the disease, thanks to higher population density and “the housing situation”, is “getting worse”.

Partly in response to a resurgence in TB cases, NHS England launched a five-year £10million strategy to target TB in January this year. Public Health England have promised to direct £1.5m for the establishment of a “national TB office and support teams to the nine TB control boards.”

In addition, NHS England has recently put funds into screening new arrivals for TB. Among British cases, roughly 72 per cent were not born in the UK and although this number is rapidly diminishing, thanks to government screening, the UK-born levels have stubbornly plateaued. While screening is helpful, Bradley argues effort needs to be put on the drugs used to inoculate and treat TB, specifically developing new ones.

“They are just so toxic, these drugs are just so toxic,” he says. “I had two and half years of drug taking, nine, ten tablets a day for two and a half years.”

While Bradley’s reaction was severe - a fact he’s keen to stress as many people do not face serious reaction to the medication - Garrett also mentions her medication regimes were problematic and hugely affected her life. “My life had to be completely on hold because there was no ability to plan for anything. I had no idea of how it was going to turn out.”

“TB has affected every strand of my life,” says Bradley, who has remained with his partner of 25 years. “It’s not what we signed up for. It damages the relationship as well.”

He emphasises that better medication, better education and an awareness that the BCG jab does not work as effectively as people believe are needed.

“It is very, very poor at working. It is not like polio or MMR or anything like that, it is not overly successful and also it only last 15 years whether you have it or not.”

Moreover, he thinks that people must realise “[TB] didn’t go in the 1950s, we didn’t get rid of it and it’s still very prevalent.”

Clegg agrees, stating there was a need for “better drugs” to improve controlling the disease. If the drugs are improved, she explains, the treatment time is shorter thus lessening the chances you may pass on the disease. “Treatment cure rates are very high,” she says, citing a 90 per cent cure. “But they are not as high as drug-resistant strains of the disease.”

Garrett expects she and her boyfriend will be affected in their old age. “My experience of TB was that the medications that are available are quite limiting, a lot of them have nasty side-effects and potentially permanent side-effects.”

“That for me was the biggest shock: the realisation that actually, we don’t have [the right medication] for diseases like TB, we don’t have the complete answer to these kinds of problems.”