Billy Kenber reports in The Times 13th June 2106: Patients set up buyers’ clubs for drugs not available on NHS and it is not surprising that this initiative come from Cardiff, Wales, where quality standards and waiting times are most under scrutiny. A group of patients with little political clout are prohibited from treatment …Hepatitis C treatment rationing is covert… and once again encourages a health divide as those who can afford it will pay.
In the 1980s an American Aids sufferer, Ron Woodroof, refused to accept that a lack of available and affordable drugs would be his death sentence. He started smuggling in unlicensed medicines from abroad and in 2013 his story was turned into a Hollywood film, Dallas Buyers Club.
Across Britain hepatitis C patients are adopting similar tactics, circumventing the NHS to source potentially lifesaving drugs from overseas, albeit legally. Many had been given hope when a new treatment developed by the American pharmaceutical company Gilead proved to be a highly effective cure for the disease, which can lead to cirrhosis and liver cancer.
The regulator for NHS-approved medicines, the National Institute for Health and Care Excellence (Nice), approved three new treatments including sofosbuvir, the Gilead drug, last year despite a price tag of almost £35,000 for a 12-week course. However, the NHS limited the treatment to 10,000 patients in the next 12 months.
Hundreds of patients are turning to websites that offer to help them buy generic versions of the new drugs for about £1,000 from countries such as India where a patent has not been granted. In Britain, newly developed drugs that remain under patent have high prices to compensate companies for the research. The buyers’ clubs are exploiting a legal loophole that allows drugs to be imported for personal use. The websites act as middlemen, providing details of suppliers in Asia, but cannot legally supply the drugs.
FixHepC.com, set up by James Freeman, an Australian liver specialist, offers a course of hepatitis C drugs for $1,600 (£1,100). For legal reasons, patients are technically enrolled in a clinical trial.
A UK-based buyers’ club run through Facebook has almost 600 members. It is run by David Cowley, from Cardiff, who was cured after joining an early trial of Gilead’s drugs. He helps other patients to source generic versions from India or Bangladesh for about £1,000.
Steve Ryder, a liver specialist working in Nottingham, said that the NHS funding was grossly inadequate and at least 5,000 treatments short. “If they’d agreed to treat 15,000 and negotiated a price for that… we wouldn’t be rationing care, people wouldn’t be going off to buy these generics and we’d have control of the epidemic in the UK, whereas with the amount they’ve funded now we won’t have that,” he said. Dr Ryder emphasised that it was important for patients taking hepatitis C drugs bought online to arrange for a medical professional to monitor them so that they knew whether the treatment was working. Although the NHS has told staff they cannot help patients with hepatitis C drugs imported from overseas, he said “a lot of clinicians may well surreptitiously offer monitoring”.
Lynne Stott, 65, who has cirrhosis, used the Facebook group to obtain the drugs but was told by medical staff in Manchester that they could not carry out blood tests to monitor whether the treatment had worked. “That meant I would have had to pay a private doctor and I couldn’t afford that — I’m just on a pension,” she said. Instead she is halfway through a three-month course of older hepatitis C medication that has left her “very ill” from side-effects. Charles Gore, chief executive of the Hepatitis C Trust, a charity considering seeking a judicial review of the NHS decision, called on the government to negotiate a better deal with Gilead.
An NHS England spokesman said that it had successfully treated “thousands of patients with acute needs” and was now working to treat those with chronic but not life-threatening hepatitis C. He said it was talking to the industry about cost “but where one drug company has an effective monopoly on some treatment subgroups, they can’t be forced to agree lower prices”.
A spokesman for Gilead said that price was not a limiting factor in patient access because Nice had deemed the treatment cost-effective and the drugs were “offered to the NHS with substantial discounts”.