A young woman – jeans and boots and wild hair – was sitting in a cubicle in the accident and emergency department of the Royal London Hospital as a junior doctor swished back the curtain.

“I’m just going to take some blood,” said Dr Emma Wallis.

“Just one?” asked the patient, spying the paraphernalia.

“Well, we’ll take a few bottles because you’ve had some palpitations so we need to test your kidneys, thyroid function and blood levels in general. Then this week in A&E, we’re offering everyone the chance of having an HIV, hepatitis B and hepatitis C test. Is that OK?”

The young woman looked confused and mildly irritated.

“I don’t like having blood taken as it is, one is enough, are you going to take loads?”

“No, it’s really easy, just one blood test, then we fill up the bottles and it’s just that much …” the doctor pinches about an inch “… extra blood needed. You wouldn’t notice it at all.”

“Yeah I don’t mind, yeah, OK …”

Wallis pulled out a syringe, siphoned the blood and, with only that small amount of time and effort, added one more patient to a landmark project that could change how we respond to three of the most common life-threatening viral illnesses. The pilot project involved offering this triple test for a week to all patients already having blood tests in 10 A&Es in England and Scotland. It sought not only to find undiagnosed people, but also to provide a crucial snapshot of how many, and who, might be living with HIV, hepatitis B and hepatitis C. Are the carriers in the populations we expect? Are the existing assumptions about the numbers affected correct? Or is there, as suspected by some, many more people affected, and in unforeseen groups?

This is the frontline in the fight against viral disease. And, for one of these viruses, the project came at a critical point in its history. Hepatitis C – dubbed the slow, silent killer because it can cause chronic liver disease that progresses insidiously, unnoticed for decades – is now within our sights. Just 25 years after the discovery of the virus, we have a cure. In fact, we have several. With their minimal side-effects and vastly reduced treatment duration, the new drugs offer a dramatic contrast to previous medication, and are what many would call a miracle. Their existence makes hepatitis C the fastest viral disease ever to be identified and cured, and indeed the only chronic viral illness that we can currently rid people of.

Science has succeeded: a disease that affects over 200,000 people in the UK and up to 150 million worldwide could, in principle, now be eradicated. But this is not a story that ends with scientists punching the air and popping champagne corks. It is also one of doctors’ frustration and desperation to find the infected, to implement this cure and wipe out a pernicious virus – all while fighting the politics, economics, ignorance and apathy that hold them back.

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Illustration by Sara Andreasson

It was a busy afternoon in the Royal London’s A&E department. Cubicles were filling up, trolleys were trundling back and forth, phones were ringing alongside the clatter of clipboards and the squeak of whiteboards. In the week of 13–20 October 2014, there were posters up around the department notifying patients about the triple test being offered. The project was called Going Viral, and was the brainchild of Dr Chloe Orkin, a consultant and honorary reader in HIV medicine at Barts Health NHS Trust.

“Last year I led an HIV-testing campaign called Test Me East, testing in the outpatients [departments] and A&Es across six hospitals,” she said, sitting in the waiting room, on the second day of the Going Viral project. “And I was standing there, speaking to patients, and saw the liver doctors walking in and out of the clinic. I thought, ‘We’ve missed a trick here, we should really be testing for hepatitis as well.’”

This was not simply a hunch. There is a huge data gap with hepatitis C. “It’s not tested for antenatally,” she said – unlike HIV and hepatitis B – although, in some parts of the UK, women from high-risk groups are screened antenatally. “People like to say that hepatitis C is something only found in people who inject drugs, but actually there are a whole lot of other populations who are at risk.”

Only in recent years have doctors realised that the hepatitis C virus (HCV) can be sexually transmitted. As it is carried in the blood but not present in significant amounts in semen and other bodily fluids, the risk of transmission during sex was presumed to be negligible. That was until patients who had never injected drugs started testing positive.

Rougher sex, anal sex and the sharing of sex toys, especially among people who are also infected with HIV, make sexual transmission possible. One can also pick up the virus, which is 10 times more infectious through blood-to-blood contact than HIV, by sharing razor blades or even toothbrushes. The virus can exist on surfaces outside the body for a few days, and for weeks within syringes.

It is thought that in the west, hepatitis C is most common in those who have shared needles, or who received blood transfusions or tattoos before the virus was discovered. In low-income countries many transmissions result from unsterile invasive medical treatments. Babies everywhere can inherit it from their mothers.

Estimates of prevalence across the globe, therefore, vary wildly – from around 1% in the US and lower still in Britain to 10% of people between 15 and 59 years old in Egypt. (Egypt has the highest prevalence in the world – a legacy, it is thought, of a campaign of injected treatments for the parasitic infection schistosomiasis that was run between the 1950s and 1980s.)

There are six major variations of HCV, called genotypes. Some 46% of infections globally are of genotype 1 (the most difficult to cure); in many parts of Europe and the Americas, this is even higher. After infection, an acute stage of disease is followed by a chronic stage for about 80% of untreated carriers. The other 20 % fight the virus and become naturally immune.

Chronic infection can lead, after years or sometimes decades, to problems: inflammation and then scarring (cirrhosis) of the liver in a third of patients, liver disease in a fifth of patients and, in a small minority, liver cancer. A common symptom before and during liver damage is exhaustion, sometimes coupled with depression, digestive problems, skin conditions, sleep problems and pain, whose causes can often be misattributed. This, together with the fact that many remain asymptomatic for years, has led to its “silent killer” tag. Around 350,000 people die globally each year because of hepatitis-C-related liver diseases.

For those in whom the disease progresses, it is debilitating – leaving many unable to work or look after themselves – before it potentially becomes deadly. Many people are diagnosed late, once there is already organ damage. Treatment can be more difficult in these cases, and a liver transplant may be the only option. The prognosis can be bleak.

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Illustration by Sara Andreasson

It is not surprising, given the profile of the virus, that Orkin included it in her Going Viral test. After the first day of screening, she was quietly optimistic about the project: “I came in in the morning and the charge nurse said, ‘Eight people had blood tests and eight accepted [the triple test].’”

Orkin expected that around 60% of patients across the 10 A&Es – five in London and others in Essex, Leicester, Leeds and Glasgow – would consent. This would amount to about 2,000 results, a number large enough to provide a telling glimpse into an untold reality. A glimpse, Orkin believed, that would be particularly useful because it would tell us which kinds of people are affected.

“One in four of us will visit A&E every year,” said Orkin. “And there are people that attend A&E that aren’t covered by GPs – for example migrants who don’t have any healthcare. We know A&Es are disproportionately used by the most disadvantaged 10%. So we can pick up a cohort that isn’t covered by the GPs … and it covers the population in terms of age range very well, and in terms of gender and ethnicity.”

About half of the 200,000 people in the UK believed to have chronic hepatitis C are undiagnosed, compared with less than a quarter of HIV carriers who are undiagnosed. And one of the key problems, according to Orkin, is that we don’t know where these people are, and in what populations. She also believes that we are “grossly underestimating” rates of hepatitis C. The snapshot provided by Going Viral could be a wake-up call for policy makers, practitioners and the public.

The number infected, she said, could be between 1% and 4% of those tested. Taking the direst end of this prediction and assuming this cohort is representative of the population, these figures would mean there are not 200,000 but 2.6 million people living in the UK with hepatitis C.

But knowing the true scale of the problem could be daunting. “People are scared of this data set – if we show that by screening we could diagnose so many hepatitis C patients, are we going to have to treat all these people? The drugs are hugely expensive.” But as Orkin pointed out, the benefit of screening is not only to find people in order to treat them, but also to give them the chance to make lifestyle changes that will protect them and others at risk of being infected. People can also change their drinking habits, which massively affects the progress of hepatitis C, Orkin said.

We headed back among the patients in A&E. I follow a nurse into a cubicle where a thirtysomething man has just consented to the triple test. Why did he agree?

“Because you never think about these things,” he said. “But it’s a good opportunity to have this test.” He was a little hesitant at first when asked if he wanted it. “But then I thought about it and said OK because you’d need to go for a GP and be referred for these things.” He has never had a test for any of the viruses before and never been offered any, but, encouragingly, has read about them and knows of some of the symptoms.

Around a corner we found a woman, around 40, lying on a bed. She had just had the test. “I thought I may as well,” she said, as her partner sat listening. “Not that I think for a moment that I need it. I didn’t take offence but I think some people might be a bit stunned by it … If you’ve got a multicultural hospital, you’ve got a lot of immigrants, they might be more at risk, so I think it’s more important that certain regions offer this service.”

The Royal London in Whitechapel, east London, serves one of the most ethnically diverse populations in Britain. As Orkin pointed out, 96% of known hepatitis B cases are in people “who were infected outside of this country”. But question marks exist over who else might be undiagnosed. And with the huge amount of missing data for hepatitis C, it is impossible to know which groups are at risk.

Not all the patients we observed gave their consent. One young pregnant woman, rushed in with severe sickness, felt too queasy to spend even a few seconds more having blood taken, but she did think that the screening was a great idea and would also like to see the triple test available in antenatal clinics.

But how manageable it is for health practitioners in a busy A&E with many more pressing priorities to offer this service? “It’s really simple,” said Jamil Khodabaccus, an emergency department assistant, who does a lot of the blood testing in the unit. “All you need to do is get approval from the patient, which is easy. It’s just one question and one more vial.” Having previously worked on Test Me East, where only the HIV test was offered, Khodabaccus found it easier to offer patients three-in-one screening. “It’s the way of presenting it that causes less anxiety to patients. The first one we did, people were scared when they heard the word HIV.”

Awareness and fear are markedly different between HIV and the hepatitis viruses. Patients, Khodabaccus said, will sometimes request an HIV test in A&E but they never ask about hepatitis B or C. “It’s a question of education – all these years we’ve heard about HIV.”

All the patients screened during Going Viral would be phoned two weeks later if any of their results were positive, before being invited back in and connected to the relevant clinic for treatment.

One other person I met in A&E is the former Radio 1 DJ Tim Westwood, 57. As a patron of the Hepatitis C Trust, he was visiting to witness the Going Viral project. “My mother had polio and now polio is extinct in the western world, and if we could do the same with hepatitis B and C … I’ve known a lot of people with that disease. It’s so important we try and wipe this disease out,” he said. “It’s achievable if the will is there and people get themselves tested. We need to seize the moment.”

But when I asked if he had ever had a hepatitis C test he looked rather sheepish and admitted that he had not. Maybe it was time he got one, I suggested. With that he agreed, walked into a cubicle and held out his arm.

***

Illustration by Sara Andreasson

Downstairs in the HIV/genito-urinary medicine unit I met Peter Martin, one of Orkin’s patients. This summer he joined a trial for MK-5172 and MK-8742, one of the new wonder-drug combinations for hepatitis C, produced by the US pharmaceutical giant Merck. He is 49 and an artist and photographer. Smartly dressed in a shirt and tie, and softly spoken, he seemed in good health. It is a dramatic, sudden change from just a few months ago before the treatment, he explained.

“I was diagnosed over 20 years ago,” he says. “I didn’t feel very well, I was living in Spain, went to a GP who sent a blood test for me and it came back positive for hepatitis C. I was very tired, lethargic and that was it. They didn’t have anything to look after me so we came back to London – me and my wife.” His wife, Laura, also tested positive for the virus.

“My wife got very ill and was treated several times [on interferon and ribavirin, the older drug combination used to treat the disease] and she couldn’t cope with the medication so I was immersed in looking after her.” Over 10 years, Peter looked after Laura during three bouts of treatment. So involved was her care and so frail was her health that he felt unable to seek treatment for his own infections, as he needed to be well enough to nurse her. It also meant he could see exactly what effect the drugs can have.

“It frightened the life out of me: massive depression, no will to live, loss of weight, nausea, pain, like a person who’s about to pass away. It was prolonged.” Then five years ago, after the agony of treatment, it finally failed, and her liver broke down. Laura died.

“By the time she passed away, Dr Orkin was apprehensive about giving me the old treatment because I’d had hepatitis C for a long time. More than anything we were afraid of the depression. I’d just made a huge effort to come back from my girl passing away and I was still …” Peter stopped and gathered himself, before looking up again. “We were teenage sweethearts, we’d never been apart, it tears half of you, just like that. We did some scans of my liver, there was damage there already, and this new treatment was hanging on the door, so she thought we might just wait to get me on this trial.”

By July 2014, when the trial began, Peter was in a terrible state. “I was very depressed and already suffering the effects of hepatitis C on the body. It’s very gradual, you don’t realise you’re losing all your energy. The last year I was in bed, no will to get up, pain around this area,” he gestured to his side near the liver. “Very debilitating. I had people coming over from abroad to be with me, people staying with me constantly, meals being prepared for me. It robs you of everything.”

He began taking the daily pill. “The only effects I could feel were a very drastic improvement within two weeks. The inflammation went down, it’s absolutely amazing. My energy began to come back.”

Now, he has completely cleared the virus and feels 90% better. “I haven’t felt like this in 10, maybe 15, years. It’s such a strange thing to go from being depressed to how I feel now, in such a brief period of time. Like I’ve just woken up.”

Although he is recovered, Peter is left with a horrible sense of loss – and not only because his wife died. “I’ve lost at least 10 years. I need to face that.”

***

Richard (who prefers not to be identified) is 31, a highly active, educated man who runs his own business. He is HIV-positive and caught hepatitis C in February 2014 from a rougher-than-normal sexual encounter. He was diagnosed in April, during the virus’s six-month acute stage. When we met he was 18 weeks into a 24-week course of interferon and ribavirin, which involved twice-daily pills and weekly self-administered injections.

“[The side-effects] only really kicked in after a month and then it was a fairly slippery slope – it went down and down. It was tough. The doctor said about 5% aren’t affected, 5% are severe – suicidal – and in the middle is this massive grey area, a spectrum. I had moments where I would be sitting watching telly – nothing emotional – and just uncontrollably break down into tears. The toughest was always the Saturday as I would do the injections on the Friday night to avoid it impacting work.”

He had never had depression before. He stopped drinking alcohol altogether, and started going to the gym, to try and boost his mood, but the loss of energy was the hardest thing to deal with. “Being self-employed I didn’t have the option of slowing down. I would get to Wednesday afternoon at 3pm and would just have to go to bed.”

Richard also suffered from insomnia – another common side-effect – and would wake up two or three times a night, further exacerbating his low energy and mood. Three months into treatment he started having breathing problems, caused by a drop in haemoglobin, the protein that carries oxygen in the blood.

With the end of treatment in sight and the side-effects stabilising, Richard was coping. But the scale of the challenge came sharply into focus when he compared treatment for hepatitis C with drugs he takes for HIV. “I’ve gone through having HIV, a pill once a day, no side-effects, and now experiencing the toughest lesson of my life.”

Richard has private healthcare and asked his provider if he could have access to one of the new treatments. He was advised that it would be possible if his doctor could make the medical case for it. But there were two issues, he was told: first, for those in the initial six months of infection, the success rate of the old treatment is 95%.

The second was caused by another data gap. “The doctor said, ‘There are no studies for your stage of disease development to justify the use of this very expensive drug. The only medical cases I can refer to is people who have chronic-stage disease.’”

And so we arrive at the other two frontiers in the fight against hepatitis C: money and politics.

On 10 October 2014, three days before Going Viral started, the US Food and Drug Administration gave approval to Harvoni (ledipasvir and sofosbuvir), the first single-pill treatment for the common genotype 1 form of hepatitis C, produced by the Californian pharmaceutical company Gilead Sciences. Harvoni costs $94,500 for a typical 12-week course – $1,125 per pill.

In England, the National Institute for Health and Care Excellence has approved the use of Sovaldi (sofosbuvir alone, also made by Gilead) for hepatitis C. Even though England is getting the drug at a discounted price – £35,000 (about $54,000) for a 12-week course rather than the $84,000 wholesale price – the cost is causing delays.

The National Institute for Health and Care Excellence (Nice) is allowing NHS England to postpone implementation for 180 days rather than the standard 90, which means that the drug is unlikely to be available widely until the end of July 2015. Such prices for treatment are probably locking out patients with hepatitis C around the world – for the time being at least.

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The economic barrier was one unforeseen by Professor Mike Houghton, the virologist who co-discovered hepatitis C in 1988. “It’s very frustrating,” he said, on the phone from the University of Alberta in Canada. “It’s very frustrating for all of us in the field to have come up with a cure after 40 or 50 years of research, a great achievement, and now we can’t get it to all the carriers because it’s too expensive … It’s no longer a research challenge, it’s a political/economic challenge.” However, Houghton does not blame Gilead, as the price is not what it seems. “They’ve produced a very potent pill and many patients are going to be cured within two months – some three months.” As a result, the new treatment is actually cheaper than the older option.

He points out that although the price for interferon and ribavirin was around $50,000, it was less effective – “a cure rate of 50%” – so it works out as “$100,000 per cure”. If patients are cured in 12 weeks on Harvoni, it would work out at about $94,500 (and just $63,000 if achieved in eight weeks). “And it cures virtually everybody.”

The price is already falling as other drugs are soon to come on to the market, including Merck’s combination. But still many governments could not afford to treat all their citizens who are infected with hepatitis C. It would cost trillions, globally, to wipe out hepatitis C using the new medications, said Houghton. So, he has another idea. “Many of us think this whole debate about hepatitis C drugs is initiating a new concept,” he said. “That is: rely on the private sector to come in with the first waves of drugs – like Harvoni – but then it’s economical for the governments around the world to develop a novel set of drugs themselves.” The reduction in cost could be immense. “Why doesn’t the EU get together and make its own drugs?” said Houghton. “£500m can treat all their carriers in seven or eight years, at cost.”

There are many barriers to governments or the EU doing this: notably, lack of political will and lack of public pressure – two sides of one coin that was spun to great effect during the Aids crisis. “HIV advocacy groups were blocking the Bay Bridge and the Golden Gate Bridge,” said Houghton. But no such equivalent patient force exists around hepatitis C. This is, he said, partly because of the demographics of the disease.

The result of a failure to create a new model to pay for treatment is, said Houghton, not simply that people such as Richard continue to suffer toxic, traumatic side-effects for months on end. “If you just reserve those [new] drugs for the most ill patients that’s not the most effective way to eradicate the disease – the longer you wait the greater the risk of the patient developing liver cancer or end-stage liver disease. And you leave them infectious.”

Like Orkin, Houghton is convinced that screening, which costs around £7 per test for hepatitis C, is vital. “It’s crystal clear: with HCV you have to identify the carriers first of all – good community screening is essential.” But, he thinks, even in the UK, with its comparatively small infected population, eradication will probably take many decades.

In the meantime there is another hope: a vaccine. A phase 2 efficacy trial is under way in Italy, and Houghton is also working on a separate vaccine in Canada. The urgency of the need for both vaccines and cures is increasing, as fears grow around hepatitis C blooming as a sexually transmitted infection.

“For many years I saw the data and concluded it was not sexually transmissible but now the new data says that [for] men who have sex with men, some of them are at risk from the sexual transmission of HCV. Especially if they are co-infected with HIV,” said Houghton.

“I get the feeling HIV is on the rise again because people are feeling, ‘Well, I’m not going to die from it because there’s therapies.’ I think there’s a relaxation going on in the community. [But] everyone needs to be vigilant.”

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Illustration by Sara Andreasson

Two weeks after Going Viral finished, the data came back. Orkin agreed to release to me two days’ worth of data, from the A&E department I visited. She will present the complete findings later this year in medical journals and conferences to trigger follow-up studies. On those two days, respectively, 57 and 59 patients who were having blood taken at the Royal London A&E consented to the extra triple test – a take-up of about two-thirds. On the first day, one patient tested positive for hepatitis B, unaware they had it. One patient tested positive for hepatitis C and one for HIV, but both already knew their statuses. On the second day, one patient was diagnosed with both HIV and hepatitis C, unaware they were carrying either.

These results are, of course, a snapshot of a snapshot, but if we take the figures for hepatitis C and scale them up, it would look like this. Two patients out of 116 is 1.7% with hepatitis C, within Orkin’s prediction of between 1% and 4%. And if we assume – for the sake of scale if not accuracy – that this was a representative sample of the UK population, this would mean 1.1 million people are living with hepatitis C – about five times the current estimate. Orkin, who has analysed the complete data, told me only that the overall results were “significant”.

I considered again the patients I met and the clinicians doing the research. All were unified by one belief: the need to test. If we cannot yet work out how to pay for treatment, if we suspect more transmissions are occurring from sex, if we know that screening can help prevent further transmissions and further liver damage, what then is it going to take for governments to try to find out who has the virus? A sudden outbreak like HIV or Ebola? An orchestrated campaign by people with hepatitis C? Publicity from celebrities who are infected? (Pamela Anderson and Marianne Faithfull are the best-known of the very few who have “come out” about their illness.) The stigma is certainly not helping – Richard felt more stigmatised by hepatitis C than HIV – but apathy seems to be the biggest constraint on action.

As accusations mount over the neglectfully slow reaction to Ebola, the death toll of which is dwarfed by that of hepatitis C, we are turning a corner for that virus. The press and public have been galvanised, forcing the hand of at least a clutch of governments, all terrified of the prospect that Ebola will spread.

But HCV is a slow killer; it creeps, quietly. In a media age, in a world that reacts to the dramatic, the instant, hepatitis C will, if we let it, shame us. If we do not take Orkin’s radical testing ideas into wider arenas and search out affordable drugs, HCV will paint us as the proverbial frogs in hot water, sitting unaware as the temperature gradually rises and, with it, the death toll.

This is an edited version of an article first published in Mosaic. It is republished here under a Creative Commons licence.

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