http://www.abc.net.au/news/2015-08-20/hepatitis-c-sufferer-imports-life-saving-drugs-from-india/6712990Hepatitis C sufferer imports life-saving drugs from India, takes on global pharmaceutical companyBy Michael Atkin and Joel Keep, Updated yesterday at 9:21pm
It is straight from the script of Hollywood movie Dallas Buyers Club — an Australian hepatitis C sufferer has taken on a global pharmaceutical company, accusing them of failing to provide a life-saving medication at an affordable cost.
"The only difference between me and the guy in Dallas Buyers Club is I'm not running it as a business and I'm not making any money out of it, as much as I like to see him with his big wads of dollar bills," Greg Jefferys told 7.30.
Mr Jefferys was so sick from hepatitis C last year that he was unable to get out of bed some days.
He dropped out of his university PhD studies and quit many of his hobbies, including kayaking and fishing.
He desperately needed a drug called Sovaldi, manufactured by US pharmaceutical giant Gilead, but could not afford it without selling his house.
"You need a minimum of 84 [tablets] so its $100,000 for a treatment," Mr Jefferys said.
"If you haven't got the money, for a lot of people it's a death sentence — you die.
"I was right on the edge of cirrhosis of the liver, once you get cirrhosis of the liver you then open up to tumours and cancer."
The desperation to find a cheaper source of medication before it was too late lead Mr Jefferys to the Indian city of Chennai.
He found the same medication on sale for less than $1,000 and his recovery was immediate.
"The same treatment with the same drug in India is $900, so it's cheap there because the Indian government didn't recognise Gilead's patent," Mr Jefferys said.
"Basically as soon as I got home I started taking it. Within 11 days all my liver functions had returned to normal and within four weeks there was no virus detectable in my blood — I was essentially cured."
The patients with liver cirrhosis are sitting there and waiting, and so I'd have to ask the company — how do you sleep at night?
Outraged at the prospect of patients suffering with hepatitis C, Mr Jefferys set up an alternative and much cheaper drug supply from India.
The demand was overwhelming, with Mr Jefferys providing the medication to over one hundred Australians in just a few months.
"I get about 40 to 50 emails every day, seven days a week and they're from people who have hep C, whose mother or father has hep C, wife [or] husband has hep C," he said.
"But I also get emails from liver clinics in Sydney, in Melbourne, in different parts of the world who are all trying to get this cheaper medication, because even the big hospitals can't afford to buy it and they're seeing their patients dying."
His actions mirror the plot of Dallas Buyers Club, which is set during the 1980s with protagonist Ron Woodroof forced to smuggle HIV/AIDS drugs into the US.
Mr Jefferys now runs a blog and Facebook group called Hepatitis C Treatment Without Borders.
Margaret Sonnemann, 61, was one of the sick Australians who received the Indian medication in the mail.
She was told about Mr Jefferys by staff at a major public hospital.
"I actually had cirrhosis of the liver, so basically I'm F4 and that's not too far from needing a liver transplant," Ms Sonnemann told 7.30.
After receiving the medication from India and completing her dosage, she has now been given the all clear.
"It took about a week-and-a-half for me to know something amazing had occurred, and I wasn't expecting to feel any kind of benefit that quickly, but after a week-and-a-half, I felt more energy than I can literally remember feeling," she said.
"It's just gotten better and better really."
Gilead 'denying treatment' to sufferers
Dr Miriam Levy treats patients with liver cancer, including those who are terminally ill, at Sydney's Liverpool Hospital.
She said it was unacceptable patients were being forced to seek the medication they needed from overseas.
"They're buying a drug online from overseas, you do that if you're a bodybuilder and you want to buy things online to make yourself look beautiful," Dr Levy said.
"You shouldn't have to do that if you've got a serious health problem in Australia, it is crazy."
She is calling on Gilead to significantly lower the price of the medication.
"They have a Volvo in my view and they're selling it at Rolls Royce prices and the reason why they can do that is there's no other cars and the problem is, is that reasonable?" Dr Levy said.
"There's at least three or four other companies who will have equivalent drugs coming to market over the next few years, but meanwhile the patients with liver cirrhosis are sitting there and waiting, and so I'd have to ask the company — how do you sleep at night?"
"Not only are they denying treatment to hundreds of thousands of people who would never be able to afford it, but it almost became an issue of 'they're out to get me'," she said.
"I felt like they were trying to kill me or something."
Gilead declined to be interviewed and instead provided a statement to 7.30, arguing it makes the drug available free of charge on a compassionate basis, but refused to say how many Australians had received the medication that way.
It said it had provided compassionate access to 400 patients with late stage liver disease at no charge.
However, Gilead refused to say if those patients were Australian or if it was a global figure.
The drug has been recommended for listing on the pharmaceutical benefits scheme, but negotiations between the company and the Federal Government have so far proven fruitless.
But the pharmaceutical giant said it hoped Sovaldi would be listed on the PBS by the end of 2015.
"We are working constructively with the Department of Health to reach an agreement on PBS listing conditions," the statement said.
"We have offered the Government a price that is consistent with the lowest price in the developed world.
"The issue of patients accessing generic medicines overseas highlights the importance of ensuring new hepatitis C treatments are listed on the PBS quickly."
Gilead said it was watching India closely to make sure the medication was not diverted and sold to Westerners looking for a bargain.
But Mr Jefferys is not concerned about the consequences and plans to continue supplying the medication.
"Well, I'm not doing anything illegal, I'm not worried about it," he said.
"What I'm doing is completely legal, completely bona fide.
"I've got a clear conscience — have they?"
[end]
June 02, 2015, 07:58:28 PM
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