Lois Rogers

Journalist and Communicator

Patients who pay £1,000 for life-saving drugs online that would cost NHS £35,000: More and more are doing it – but doctors warn it’s a big risk

Health policy

 

  • Kim Crisell, 60, from Witham, Essex, was told he faced certain death
  • He had been diagnosed liver disease three years ago, and looked online
  • The best hope was to wait for a new wonder drug called Harvoni

When Kim Crisell was told he faced certain death from recently diagnosed liver disease three years ago, he did what countless other people with medical fears do: he went on the internet. Kim, 60, a former electronics engineer, had been told he had hepatitis C, which raised his risk of cirrhosis and liver cancer. The only treatment was a drug called interferon, but his doctors told Kim it was unlikely to work and the side-effects – damage to his immune system – would probably outweigh any benefit. The best hope was to wait for a new wonder drug called Harvoni that would kill the hepatitis virus altogether, and which was just about to be launched.

Kim, who runs a fishing supplies shop in Witham, Essex, has no idea how he contracted the virus. In fact, up to a third of the 220,000 Britons infected with hepatitis C are thought to have contracted it unwittingly from contaminated blood transfusions, tattoos, piercings or possibly even dentistry (the risk of this is very low in the UK, but higher in countries where the disease is common). Some experts believe the level of ‘silent’ hepatitis C infection among Britons could be much higher than official figures suggest. A study published in 2011 in the journal Clinical Microbiology and Infection estimated that 660,000 people in the UK are unaware that they are afflicted with this deadly, liver-destroying time bomb.

But Harvoni and other new, targeted drugs should be able to eliminate hepatitis C altogether. ‘I wasn’t going to wait around to die,’ Kim says. ‘I kept an eye on the internet – but when Harvoni came on the market in America in 2014, it was $94,000 [£64,300] for the 12-week course.’  The drug was eventually approved in Britain last November. But it costs £35,000 per patient, so only a small minority of hep C sufferers were going to get it. (The charity Hepatitis C Trust has just announced it is seeking a judicial review of the NHS cap on drugs such as Harvoni.) Faced with the prospect of having to wait until his liver ‘packed up’ before he could be prescribed the drug, Kim kept searching the internet. Then, last year, he came across James Freeman, a GP in Australia who runs a website called fixhepc.com, supplying Harvoni made in India and China at a fraction of the UK price. The U.S. pharmaceutical firm Gilead, which originally developed Harvoni, had given licences to companies in India and China to produce cut-price versions of the treatment for local markets. Dr Freeman, who set up his online consultancy in 2011, says although he was delighted that Gilead had discovered the first cure for the virus, he was astonished by the price.

‘They are selling it in Australia for A$1,000 [almost £500] a tablet when it costs less than one dollar to make the pill,’ he told Good Health. Dr Freeman has the drug shipped first to Australia, where it is checked for purity before being sent on to patients. It is not illegal to import prescription drugs for personal use into the UK and there are growing numbers of online pharmacies. Kim completed an online consultation and paid just over £1,000 for an internet prescription from Dr Freeman. The drugs arrived by post and he took the 12-week course of treatment under the supervision of doctors at Addenbrooke’s Hospital in Cambridge, who had agreed to monitor him. He started taking the daily pill in January and within four weeks the virus was no longer detectable in his blood. He took his last Harvoni tablet last month and is awaiting final confirmation that the virus has vanished for good. ‘There’s no question this drug has saved my life and I will now be around to play with my grandchildren,’ says Kim, who is divorced and lives with his 22-year-old son Jack. His daughter Rachel, 26, lives up the road with her partner and Kim’s first grandchild, two-year-old Emily.

All the patients who receive the drugs supplied by Dr Freeman are entered into a clinical trial to show their response to the treatment. ‘This buyers’ club has helped more than 1,000 people around the world get hepatitis C drugs,’ says Dr Freeman. ‘We are keeping costs down by getting the manufacturers to supply imports for around 20 patients in one consignment – effectively bulk buying. That’s why it’s a kind of club.’ Dr Freeman, who is based in Hobart, Tasmania, has just presented data at the International Liver Congress in Barcelona, showing hepatitis C cure rates of 94 per cent from his Harvoni sourced in India and China. His ‘club’ also provides access to another hep C drug called Sovaldi, also originally developed by Gilead.

Kim thinks his infection came from a tattoo more than 40 years ago, but has no way of knowing for certain. ‘This disease is a silent killer,’ he says. ‘It eats away at your liver for years before you have any idea you’ve got it. It’s pure luck that I discovered I had it before I got liver failure. By then it would have been too late.’ The diagnosis came about because he ate an undercooked sausage roll on a cross-Channel ferry. Two weeks later, he was still feeling ill, and a customer in his shop commented that he looked yellow. His GP sent him to hospital, and tests revealed he had hepatitis C. He was admitted immediately for treatment for liver disease. After two weeks, he was referred to doctors at Addenbrooke’s, who discovered he also had hepatitis E, which had been carried in the undercooked sausage roll. Although the doctors were able to treat the hepatitis E, they said the only available treatment for hepatitis C was interferon.

David Ritchie, 56, is another of Dr Freeman’s customers. ‘Like a lot of people, I had no idea I was infected with hepatitis C,’ says the former Aberdeen University bioinformatics lecturer, who works for a French government research agency in Nancy. ‘It only comes to light as your immune system declines with age. I was getting increasingly tired and couldn’t understand why. I had a blood test which found I’d already had liver damage.’

Last November, David flew to Tasmania to check out Dr Freeman and get the drug. He is now completely cured. ‘I started to feel better within a few days of treatment – it was dramatic.’ But he says he is ‘really angry with Gilead… This price is completely made up and has nothing to do with production costs or funding new drug research.’ A spokeswoman for Gilead said the company would negotiate on price if asked. ‘We remain ready and willing to continue discussions with the government and NHS England in the public interest and in a constructive manner,’ she told Good Health. ‘Buying medicines online may put people at risk.’

However, NHS England appears unwilling to discuss the price. A spokesman said only 10,000 hepatitis C sufferers will get the new treatment in this financial year. ‘We have no power to negotiate over drug prices where there is a monopoly supplier,’ he added. ‘There are hopes that more people will be treated in the financial year starting April 2017. Pharmaceutical companies have a key role in making these drugs more affordable, so more people can benefit sooner.’

Dr Andrew Hill, a pharmacologist from the University of Liverpool who has worked tirelessly to expose the inequalities of drug pricing, said Gilead has made billions in profits because it is the sole manufacturer of new hepatitis C treatments, so it has a monopoly. ‘Some NHS hospitals have 300 hep C patients on their books and they can only treat three or four a month with this drug because of the cost,’ he said.

Doctors predict that internet drug buyers’ clubs are the shape of things to come. Graham Cooke, a consultant in infectious diseases at Imperial College London, says he is supervising NHS patients who have received hep C treatments via fixhepc.com. ‘This is a growing trend, as the prices for cancer drugs and other treatments mean they are increasingly unavailable on the NHS,’ he adds. ‘We are starting to see people coming into clinics who ask us to help them use medications they have got elsewhere. We are trying to work out if there are rogue agents out there supplying counterfeit drugs, but we haven’t seen any so far.’

The Medicines and Healthcare Products Regulatory Agency (MHRA) is concerned about the growth of internet shopping for medications because of the risk of counterfeits. ‘We urge patients to think very carefully before purchasing medicinal products online,’ said a spokesman. ‘If you choose to do so, you should only buy from a site registered with MHRA that displays the new EU common logo. Without this, you have no idea where the medicines come from or what they might contain.’

The Association of the British Pharmaceutical Industry also disapproves. ‘Programmes have been established to allow patients in the poorest economies to benefit from innovations such as curative treatments for hepatitis C,’ a spokesman said. ‘When these arrangements are misused to redirect supply, it undermines the availability of health treatments for the poorest people in the world, and undermines the incentives for innovation that will lead us to the next treatments.’

 

 

Written by Lois Rogers