Hep C drug that can cure – but is it too expensive?

There are some phone calls which brighten up your day. I have just had one of those. It was from Nils Nordal and he was phoning from his hospital bed in the Royal Free, north London.

Earlier this year we highlighted the case of Mr Nordal, who had hepatitis C and who desperately needed a new drug which could clear the virus from his system.

NHS England had agreed (after some delay) to an early funding of the drug – Sofosbuvir – for 500 of the most severely ill patients with hepatitis C. But then there was a further delay while they tried to work out how to actually move the funding to the doctors who wanted to prescribe the drug.

In the meantime, Mr Nordal’s condition was deteriorating. His liver was failing and he was on the transplant list. In the end, his consultant went straight to the drug company, Gilead, on the understanding that Mr Nordal would be on NHS England’s list to receive Sofosbuvir.

The drug has a 90-95 per cent success rate and is sometime better tolerated by those with a more serious form of the disease.

And for those who still need a liver transplant, there is some evidence that it can reverse some of the damage to the liver.

Now to the phone call. Six weeks after starting the 12-week course of Sofosbuvir, Mr Nordal was virus-free.

Unfortunately, the liver damage was too great, so two weeks ago he was given a transplant. And it appears, fingers crossed, to have been a success.

Crucially, too, his chances of recovery will have been greatly helped by being hep C free.

Although describing post-transplant as “tremendously painful”, Mr Nordal said he was feeling positive and that he was getting stronger every day.

“The doctors are happy,” he said. “I am showing no signs of rejection, I am walking, I am becoming more independent.”

Mr Nordal, who contracted the disease following dental surgery in Egypt 20 years ago, lives in Oxford with his wife Dana and his three young girls. It is an understatement to say that the past year has been hard for the entire family as they have watched him become more and more sick.

Today he said that you could see the relief on the faces of his daughters.

In a week’s time he will be tested again to check that he remains free from the virus.

So it is wonderful news.

What is not clear is whether Mr Nordal’s transplant could have been avoided altogether if he had received the drug earlier. Quite possibly the damage had already been done by the time the drug was licensed at the end of last year.

But it is very likely that he would have been far healthier and lived with less uncertainty if the funding decision had been speeded up.

The time it took to decide whether it could be funded here was time he did not have. This is not to say that he is not grateful, because he is.

The problem, as is so often the case, is that it is not a cheap treatment. Sofosbuvir costs £35,000 for a 12 week course. The fast-track funding, following pressure from the Hepatitis C Trust, was welcomed, but it was not, in the end, as fast as other countries.

The current treatments can include interferon, which have to be taken for long periods of time, and can have such awful side-effects some patients stop the course and become ill or are reluctant to seek treatment in the first place.

The National Institute for Health and Care Excellence last week issued draft guidance recommending the drug for some people with chronic hepatitis C.

Yet, that price tag remains a problem. There have been protests in America where a 12-week treatment costs $84,000. In developing countries, where Hepatitis C is at epidemic levels, it is simply not available.

Gilead has said that it prices the drug differently around the world, so it is, they said significantly cheaper in Egypt than in the US. And they have also argued that the cost of saving someone’s life or preventing a transplant make it cost-effective.

Protesters say there is no transparency in how the price was reached. Indeed, there have recently been comparisons with the battles fought over the pricing of drugs for HIV. In the end, the sheer force of the moral argument led some pharmaceutical companies towards a fairer, more accessible price tag.

The same argument is being made here. But in the case of Sofosbuvir, there is one fundamental difference: HIV drugs keep people alive but do not cure the disease. This new generation of hepatitis C drugs can – in many patients – eradicate the virus.

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