A woman denied a potentially life-saving £35,000 drug on the NHS because it is “too expensive” has sourced it herself from India – for just £650.
Zoe Sharam, 43, was diagnosed with the debilitating liver disease Hepatitis C four years ago but thinks she contracted it around 20 years ago.
When it got worse she assumed she would be entitled to the recently-approved ‘wonder drug‘ Harvoni – which claims to cure up to 99 per cent of sufferers.
The mother-of-three was distraught to hear just a fraction of people get the drug super-expensive drug and she was put on a long waiting list.
But she found advice online about how to exploit relaxed licencing laws in developing countries and sourced the exact same drug from India at a fraction of the price.
Social worker Zoe, from Ipplepen, Devon, who is nine weeks into her treatment, said: “Everyone deserves the right to be well. I shouldn’t have to pay for it.
“I don’t blame the NHS – it’s the drug companies.
“They are making billions of pounds of profit, yet they are dangling this cure in front of people like a carrot.
“Why should they be allowed to charge an already struggling NHS thousands?
“Everyone deserves the right to be well.”
With hindsight, Zoe thinks she contracted the potentially-fatal Hep C in her early 20s during a short period of intravenous drug use.
But around five years ago she started to suffer with digestive problems, anxiety and depression, and was diagnosed with Hep C a year later after getting an STD test.
“Hep C wasn’t on my radar back then – it wasn’t on anyone’s,” she said.
“A single act of stupidity and you are stuck with something for the rest of your life that will eventually kill you if you don’t get rid of it.”
At the time, there were treatment options available – which are still used by the NHS – which sufferers commonly dub the “old regime”.
Critics complain they only have a 45-50 per cent success rate, and some with intense side such as flu-like symptoms, rashes and extreme muscle pain.
Like many, Zoe’s symptoms were initially manageable, and she opted to wait for better treatments in development to be released.
Last year, The National Institute for Health and Care Excellence (NICE) approved use of one-pill-a-day Harvoni by the NHS.
Zoe went to her nurse in April when her condition got worse, and extreme fatigue forced her to give up work, expecting to be given the pill-a-day treatment.
But she was told that due to the massive costs, just 15 people a month in her area get the medicine – and she wasn’t sick enough.
“I left the hospital bawling my eyes out,” she said.
“I’d been given a death sentence.”
Distraught Zoe posted on Facebook about her frustration, where it was spotted by a friend, who directed her towards campaigner David Cowley.
The 58-year-old from Cardiff runs the Facebook page for the ‘buyers club’ Hep C World Generic Treatment.
He was cured three years ago as part of a clinical trial and was appalled when he subsequently heard the price the NHS was being charged for the drugs.
The father-of-two discovered the US pharmaceutical firm Gilead – which originally developed Harvoni – had given licences to companies in India and China to produce cut-price versions of the treatment.
Along with four others around the world, he helps sufferers completely legally personally import 12 week courses for around £650.
Zoe is one of 200 British people – and 10,000 worldwide – who are using the UK-founded club to circumnavigate NHS red tape to get the drugs they need.
David, has been disease free since 2013, estimates the drugs cost around US$100 to manufacture.
He said: “The drug companies are holding people to ransom.
“They are offering a cure to a debilitating disease that bankrupts our health system.
“It’s pure greed.
“Between myself, two Australians, an Indian guy and someone from South Africa, we have helped about 10,000 globally.”
Zoe managed to borrow the money from a friend to get her treatment – which she claims is being taken with the full knowledge of her equally-frustrated doctors.
It’s early days, but she is already feeling better.
“I managed to borrow money off a friend luckily, but not everyone can and there’s still people out there dying,” she said.
“I feel like we have been shoved to the back of the queue.”
A spokesperson from Gilead said it did not charge the NHS £35,000 a course – but said they could not say how much it cost.
They added: “Gilead understands that there have been reports of patients accessing hepatitis C medicines via buyers’ clubs online.
“Gilead cannot comment on the safety or efficacy of medicines supplied in this way.
“However, Gilead shares the view of the Medicines and Healthcare products Regulatory Agency (MHRA) and the NHS that it is potentially unsafe to buy prescription medicines on the internet other than from online pharmacies registered with the General Pharmaceutical Council.
“In the UK, the price of treatment should not be considered as the limiting factor in patient access.
“Our hepatitis C regimens have been deemed cost effective by The National Institute for Health and Care Excellence (NICE) at list price and are offered to the NHS with discounts to these already cost-effective prices.
“According to the NICE mandate and NHS Constitution, Gilead’s hepatitis C treatments and other NICE approved direct-acting antivirals should be available on the NHS for all eligible patients with hepatitis C in England (and Wales), if deemed appropriate by their treating physician.”
An NHS England spokesperson added: “The NHS’ single biggest new treatment investment this year is providing these high-cost treatments to thousands of people with Hep C, in accordance with NICE guidance.
“The NHS has successfully now treated thousands of patients with acute needs, and is now working on a phased basis to treat the far larger number of patients with chronic but not life-threatening Hep C.
“The Department of Health have been running successful competitive procurements to secure the best prices they can.
“As prices come down we hope in future years to be able to expand treatments even further within the funding available, and the industry is now engaging in the discussions with us about how best to do this.”
