Picture of health: 'Our medical reporting is about suffering, money and power'

I must admit I took the sleep-inducing drinks home. I thought maybe one of these nights, lying awake worrying whether I might incur a libel writ over the latest salvo against a drug company, they might come in useful. But the other things – the herbal pills, the sugar-free (artificial-sweetener-loaded) cordials and the zillion books on diet fads and novelty exercise regimes – are piled on top of the filing cupboard beside my desk, for anyone who fancies them.

I do wonder why PR agencies don’t save themselves postage by a quick online search to look at the stories I actually write, but I have to admit my job title isn’t helpful. I’m not an editor and I don’t cover health in the sense of wellbeing. Sorry, guys. Instead, though, I’ve got one of the most amazing jobs on the Guardian: a mix of investigative journalist, feature writer and occasionally foreign correspondent. It’s just developed that way over the years, via the sorts of stories I’ve pursued. I didn’t want to cover health when it was first suggested, worrying that it was too much of a soft topic, but it has been far from that and absolutely fascinating. My biggest headache is finding the time to look into all the interesting and important issues people tip me off about, in between covering the latest embargoed research on aspirin, vaping or cancer that the newsdesk understandably wants as well.

Carlie Pleasant, who suffers from cystic fibrosis, with her son Jude and her husband.

Carlie Pleasant, who suffers from cystic fibrosis, with her son Jude and her husband. Photograph: handout

Lately I’ve been much taken up by the tussle between the US biotech company Vertex and the NHS, over access to its drug Orkambi for cystic fibrosis. They are locked in a six-month stalemate at the moment, with Vertex refusing to drop the price to a level the NHS can afford, according to the formula set out by Nice, the National Institute for Health and Care Excellence (often referred to in the press, which hates long names and acronyms as an “NHS watchdog”).

It’s a big story on so many levels. Firstly and most importantly, there are the 10,400 children and young people with cystic fibrosis in the UK, whose accounts of this life-shortening disease and their hopes for the future are truly heart-wrenching. About 40% could be helped by Orkambi and many more by new drugs on the horizon. We did a podcast with Carlie Pleasant, a 29-year-old with a little baby and husband who says she thinks about dying and leaving them every day. It’s hard to imagine how anyone can refuse young people like her – and yet they are losing 2% of their lung function every year while the wrangling goes on. That’s damage that cannot be repaired.

But the stakes are very high. Access to medicines is a huge global issue. I began writing about it 20 years ago, when the battle was over Aids drugs in Africa. Big pharma did not cover itself in glory then. The reputational damage spurred some of the big companies into efforts to make more drugs accessible in low-income countries, but the fundamental problem remains – and is now affecting not only on impoverished communities but also wealthy nations such as Britain and the US. Drug prices are too high to allow all those who need them to be treated. Plenty of people would say that is a human rights issue.

So the Orkambi story matters. It is not a soft story – it is about human suffering, money and power. There has been no shortage of people wanting to talk about it and share information, often in confidence. In turn, we have to be incredibly careful that we write responsibly and accurately, to keep their trust.

I’ve written any number of pieces about big corporations making money at the expense of our health – whether drug companies pitching medicines at extortionate prices, tobacco companies trying to get us hooked or food and drink companies marketing sugary drinks to children. It would be easy to see corporations as automatically the enemy.

But it’s not so simple. Covering the growing anti-vaccination movement across Europe and in the United States and its links to populism, I find myself on the same side as the companies – or at least, the scientists who do the research (not the marketing people). In my job, I have to side with the best science. And that science, when it comes to vaccinations, says they are safe and they work.

Dr Wilfried Mutombo Kalonji and his team in Mushie, DRC, where they are trialling new drugs to help eradicate sleeping sickness.

Dr Wilfried Mutombo Kalonji and his team in Mushie, DRC, where they are trialling new drugs to help eradicate sleeping sickness. Photograph: David Levene/The Guardian

I was at the press conference at the Royal Free Hospital in London in 1998 (I had just started covering health) where gastroenterologist Andrew Wakefield launched the hypothesis that would fire up the anti-vaccination movement across the globe – that the measles, mumps and rubella vaccine was linked to autism. That has been totally discredited, as has he, and yet it won’t go away.

So Europe is now in the grip of record measles outbreaks – among adults and children who were not vaccinated. The same has happened in the US. But the anti-vaxx movement refuses to recognise the correlation. It’s a complicated story, because different groups of people in different countries have different reasons for their suspicions and fears. But the doubts are being spread far and wide on social media, including through paid, scary advertising on Facebook targeting young mums with pictures of babies falsely alleged to have died because of vaccination.

I get to do happier stories. I went to the Democratic Republic of Congo last year, to talk to Congolese doctors who have done amazing work to successfully trial a drug that could help eradicate sleeping sickness – a horrible and lethal disease. It was a really positive, upbeat story, which was a fantastic thing to be able to do in a country everyone associated with violence. And the people I met there were lovely.

It’s a great job, even if I do get inundated with emails about new shampoos, and jewellery ranges and catwalk fashion. And even if my head is buzzing so much some nights that I can’t nod off. Now – where did I put that sleeping potion?


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