In a meeting room tucked away behind a clothes market in east London, around 10 people are meeting to discuss how they might import drugs from South America.

This group of patients and parents are hoping to buy a copy or generic version of Orkambi – a drug which helps slow the decline in lung function and decrease the risk of infections in people with cystic fibrosis.

More than 10,000 people in the UK have the debilitating genetic condition, which affects the lungs and other organs.

Much like the HIV treatment buyers’ club of the 1980s – made famous by the Oscar-winning film, Dallas Buyers Club, groups like these are offering an alternative to those who have been losing out on the drugs used to treat their condition.

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