What would you do if you had a potentially lethal illness, knew of a “miracle” cure which would most likely fix the problem in three months by taking one pill a day, but you couldn’t afford to buy the medicine from the drug company that owned the patent? 

This is the position that Patient Zero found himself in. And he, with a doctor and a group of campaigning mates, found an answer – one that they believe costs up to 30 times less than the drug company might expect them to pay.

Now they want to share it with the estimated 233,000 Australian sufferers of hepatitis C, a virus the World Health Organisation describes as a “viral time bomb” affecting 150 million people globally and killing 500,000 a year.

Patient Zero is 59 and he’s been carrying the virus since 1978, when he experimented with drugs. He didn’t find out he had the virus – which attacks the liver and can cause fatal cirrhosis and cancer – until 2004, when a blood test let him know his personal time bomb had been ticking for 26 years.

Patient Zero goes by another name. One that made him a legend among the cannabis cognoscente of the 1980s. 

Nevil Schoenmakers, an Australian/Dutch dual citizen, was dubbed the King of Cannabis, a veritable royal highness who clashed with the law in the United States, jumped bail in Australia, and eventually saw attempts to extradite him to America wither on the vine.

He grew up in Perth and made his name in Holland with the Seed Bank, breeding robust strains of quality cannabis for sale, including his premier product, Nevil’s Haze. He knows about the highs and lows of life. But his lows have deepened in the past five years with his deteriorating health.

Now living in modest circumstances in rural NSW, he is fighting to get better because he’s a key part of a campaign to make medical marijuana legal. That campaign is the FixHepC Buyers Club and United in Compassion, founded by Troy Langman and Lucy Haslam, who promised her 25-year-old son, Dan, before he died of cancer in February that she would continue his fight to make it legal to ease the pain of the gravely ill with medicinal cannabis.

The FixHepC Buyers Club, along with United in Compassion, are showing Hep C sufferers exactly how to buy a generic form of the “miracle” cure now from China for between $US1000 and $US2000, rather than wait for Gilead Sciences, which owns the patent, and the Pharmaceutical Benefits Scheme to negotiate what is expected to be a very much higher price.

The Gilead drugs are called Harvoni and Sovaldi, which cost $US84,000, or $1000 a pill, for a three-month course in the US, even though one study found the pills could be made for $1 each. Rob Hetherington, general manager of Gilead Sciences Australia & New Zealand, said the reported prices would not apply in Australia, but he won’t put a dollar figure on what patients can expect to pay, because negotiations are confidential. 

“We have offered the government a price that is consistent with the lowest price in the developed world for both Sovaldi and Harvoni,” he said.

France negotiated “the lowest price in Europe” for a course of Sovaldi – 41,000 euros, instead of 56,000 euros ($64,600, instead of $88,230). A spokesman for the Department of Health said listing the drugs would have “a financial impact of more than $20 million in any of the first four years of listing”. 

So if Australia negotiated a deal like France, for instance, that $20 million would buy the treatment for just 309 patients. And at that rate, it would not only take nearly 750 years to treat all of the current Hep C patients in Australia, but it wouldn’t make a dent in the 10,000-plus new cases a year.

In the meantime, with patients dying of hepatitis C every day in this country, some can’t wait. Existing treatments with drugs like interferon are said to have a 50 per cent success rate at best, take a year, make patients feel wretched with side effects and cost $50,000.

Schoenmakers wasn’t willing to go down that path. Unhappy with the medical advice he was getting and feeling particularly low a few months ago, thinking his symptoms indicated his condition was terminal, he read about Skype doctors and contacted GP2U and its founder, Dr James Freeman.

Together, they talked about the latest treatments for hepatitis C, including possibly sourcing the drug components of Harvoni and Sovaldi from India. 

But while others have gone down that route, they decided it would not be right for Schoenmakers’ type of hepatitis C, because the component drugs of Harvoni (Sofosbuvir and Ledipasvir) are not generically available there. 

Eventually, they found they could acquire the right dosages from a manufacturer in China and, quite legally with a doctor’s prescription, could have them sent to Australia, where they were thoroughly tested – the FixHepC website explains how it works and the costs involved. Four weeks into the 12-week course, Schoenmakers had another blood test. It showed he was clear of hepatitis C for the first time in 37 years. He now wants to help other sufferers by showing them it’s not hard to get the drugs they need now, at a fraction of the cost patients pay in the US.

 “It’s not OK that you can make a $1 tablet and market it for $1000. That’s obscene. People are sick and dying and basically drug companies are holding those who can least afford it to ransom. I find that objectionable,” he said.

Haslam agrees. “I think recouping legitimate research and development costs and pursuing a profit to satisfy shareholders is one thing, but, in the case of Harvoni, it’s a greatly inflated cost to the patient, and the words ‘legitimate’ and ‘reasonable’ have just gone out the window. At the end of the day, it’s all about saving lives,” she said.

Meanwhile, before Gilead Sciences completes its negotiations and reveals the prices of its life-saving drugs, it says it has given free medicine on compassionate grounds to 300 patients with “late-stage liver disease”. It also donates free drugs for a trial in NSW prisons, where Hep C is rampant. The company can afford to be generous. The Sovaldi and Harvoni treatments were developed by Pharmasset, which Gilead bought for $US11 billion in 2011. Sovaldi alone earned Gilead more than $US10 billion last year, and, with Harvoni, raked in $US4.4 billion in the first quarter of this financial year.

Langman, of United in Compassion, is not impressed. “Gilead Sciences didn’t even develop this product. They purchased it and they made that back very quickly. You can still make a good profit with the people who need this medicine,” he said.

– The Sydney Morning Herald