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Why So Few Hepatitis C Patients Get Access to "Miracle Drug" Treatments

On World Hepatitis Day, near-“miracle” drugs are overshadowed by poor access to treatment.

by Victoria Turk
Jul 28 2014, 2:25pm
An illustration of the hepatitis virus. Image: Shutterstock/xrender

On World Hepatitis Day—an awareness-raising initiative that falls today, July 28—any optimism about new treatments for the infectious disease should be tempered by an overriding dismal report on the current extent of the problem.

The most crushing stat from a report out today by Public Health England is that, against a fanfare for new, improved, and in some cases near-“miracle” treatments, the number of those chronically infected with hepatitis C that are actually starting treatment each year is very low. For the year of 2011 in the UK, it was approximately three percent. That’s single-figure, less-than-five-in-a-hundred, three. 

That figure is taken from a 2014 study that predicted the number of people undergoing treatment from the amount of hep C drugs supplied nationally. The researchers estimated that 5,000 patients were treated in 2011, and a total of 28,000 (17 percent of chronic cases) from 2006 to 2011. Those figures are obviously poor, and even more so considering that the viral infection is a) incredibly damaging, killing one million people a year globally according to the World Health Organisation, but b) perfectly treatable. 

“Hepatitis C is a curable disease and to have so few people accessing treatment is simply not acceptable,” researcher Helen Harris, who led the PHE report, told me over email.

It’s even more curable thanks to some recent breakthrough treatments now available in the UK and elsewhere. The NHS agreed to fund sofosbuvir, which has been found to treat the disease much faster and more effectively than past treatment options. Researchers at the University of Texas trialled another new treatment and announced an over 90 percent cure rate in a paper published in April (though the NHS is cautious about those claims, noting a lack of comparison group in the study). Even today, a study in The Lancet reported a highly effective new treatment that combines sofosbuvir with another drug, simprevir.

These breakthroughs are of course very promising, and will no doubt help improve treatment rates. They’re poised to be easier (often just requiring taking a course of pills), less time-consuming, and have fewer side effects—addressing drawbacks that could be deterring some from treatment.

But the low rates of treatment in the UK and elsewhere aren’t just down to the medications themselves, and cutting edge drugs can only work their “miracle” if people actually take them. The mixed messages of an optimistic future and the pessimistic reality is a reminder that translating scientific breakthroughs into an actual benefit for society requires as much work outside of the lab as inside it.

One of the main issues is availability. The PHE report notes that hepatitis C “predominantly affects marginalised groups of society, including those who inject drugs, and minority ethnic populations.” It quotes a survey that found 50 percent of people who inject drugs in England are infected. 

Harris told me that to tackle the low treatment rates, treatment has to become more accessible. “This means expansion of treatment into non-traditional settings, such as primary care, drug treatment centres, and prisons,” she said. “This would help us to tackle hepatitis C and address health inequalities by reducing the excess premature deaths from hepatitis C-related liver disease that are concentrated in marginalised populations.”

Access to treatment is hardly a problem limited to the UK. In the US, there’s controversy over the cost of the new sofosbuvir drug, which goes under the brand name Sovaldi. The BBC reported that it’ll cost $84,000 for a 12-week course, which obviously puts it out of the reach of many, and particularly those in the marginalised communities most affected. Its prohibitive pricing has led the US Senate Finance Committee to launch an investigation into pharma company Gilead Sciences. Of course, not treating the disease is likely to incur even greater costs in the end, with some patients requiring a liver transplant.

And before you even get to the treatment phase, there’s a widespread problem of lacking awareness and therefore low diagnosis rates. Harris explained that many people are unaware they’re infected because of the condition is often asymptomatic, at least at first: symptoms often occur after there’s already been damage to the liver, and even then it’s easy to miss the cause as they include flu-like and other non-specific symptoms.

Part of the point of today, then, is to raise awareness so people know they may be at risk and might want to get tested; as with most conditions, the earlier you start treatment, the better. With improved treatments, rising death rates—deaths from hepatitis more than quadrupled in the UK from 1996 to 2012—are only more depressing.

As Charles Gore of the Hepatitis C Trust said in a statement, “Deaths from hepatitis C are now eminently preventable. It is up to us to see that we do prevent them.”