“I was rapidly approaching cirrhosis and my doctors said I might have liver cancer,” said Jefferys. Like millions of people worldwide, his liver was being destroyed by the hepatitis C virus (HCV).
As is typical of HCV victims, Jefferys had no idea he’d had it since the mid-70s. In August 2014 he was diagnosed and told he had contracted it when shooting drugs.
“I left home at 16,” he told me, “and was happy in a kind of crazy way. I was a mixed-up kid living on the streets and couch surfing. I drifted from the hippie culture into the drug culture and became a casual heroin user for a year. Then, for the next year, I became seriously addicted but I quit cold turkey after seeing a few friends OD.”
HCV is a global epidemic. An estimated 200 million people across the globe have the disease—that’s 3.3% of the population—including 3 to 5 million in the U.S., many of whom don’t know they have it. Seventy-five percent of those with HCV infection in the United States were born between 1945 and 1965. The largest group are those that shared needles when they shot drugs. Statistically, as many people are infected with HCV as are with HIV, the virus that causes AIDS. Without large-scale efforts to contain the spread of HCV and treat infected populations, the death rate from HCV will surpass that of AIDS by the end of this century and will only get worse.
For every 100 people infected with HCV, without treatment 75 to 85 will develop chronic infection, 60 to 70 will develop chronic liver disease, 5 to 20 will develop cirrhosis, and 1 to 5 will die of cirrhosis or liver cancer. HCV is also the most common reason for liver transplants.
Gilead Sciences, known best for its HIV/AIDS treatments, is now the leader in HCV drugs—Sovaldi (sofosbuvir) and Harvoni (ledipasvir and sofosbuvir)—which can cure nearly all patients within 2 to 3 months. The obstacle is the grossly inflated price tag. Sovaldi costs $1,000 per pill and Harvoni costs $1,125 per pill. According to the Wall Street Journal, the sales total for Harvoni and Sovaldi reached $19.14 billion in 2015. For comparison’s sake, it took Pfizer’s blockbuster medicine Lipitor nine years before it reached its record-breaking sales of $12.9 billion.
When Jefferys was diagnosed in August 2014, he knew he could never afford the drugs he needed to cure his HCV. Three months of pills would’ve cost him close to USD$100,000. That’s when he began an exhaustive Internet search for an alternative. He finally found it in India, where the generic Indian Harvoni for the full 12-week treatment cost the equivalent of USD$1,350—only slightly more than the cost of one single pill here in America.
Jefferys said, “Gilead has licensed four major Indian pharmaceutical manufacturers to make and distribute licensed generic versions of Harvoni. The four licensed manufacturers are Cipla, Mylan, Natco Pharma and Hetero and all their products are chemically identical.”
In 2015, Jefferys flew from his home in Australia to Chennai, India. He purchased the generic meds and underwent his 12-week treatment there. Within 11 days his liver functions had returned to normal and within four weeks, there was no longer any virus detected in his blood. The trip and treatment cost him less than $4,000.
I’ve dubbed Jefferys the Tasmanian Angel because after he learned where to find affordable lifesaving meds for his HCV, he reached out to help others. I asked Jefferys if he got the idea for helping HCV sufferers access generic pills from the movie Dallas Buyers Club. That’s when the Australian’s big, warm grin filled my monitor for the first time. “I watched the Dallas Buyers Club after I first started doing this. Watching it did give me a few good ideas.”
Unlike Ron Woodroof (Matthew McConaughey’s character in the film), however, Jefferys is not motivated by money. “When I first started helping people to access affordable hep C medicines,” said Jefferys, “I never thought it would become a full-time occupation. But it has. I don’t want to profit from people’s sickness, though. There is enough of that going on already.”
Jefferys continued, “When I started off I didn’t think it was going to become such a big thing, so I did everything for free. When it started to take up so much of my time I told people, ‘Look, if you can afford to give me a small amount for my time that would be very much appreciated but if you can’t, that’s okay, too.’
“Now, if I handle a transaction from beginning to end where someone says, ‘I want you to do everything for me. I’ll send you the money. You send it to your contact. You organize all the documents.’ In that case, I say, ‘I’ll charge a fee for that, but if you can’t afford the fee, then you don’t have to pay it.’”
He told me of a woman he’s currently helping. “She’s from Serbia and her mother has hep C. I’m organizing everything for her and doing that at below my cost. In Serbia the income is like $50 dollars a week. I don’t want to make any money at all on that transaction.”
What about the legalities? Jefferys said, “It is perfectly legal to go to another country, buy generic drugs, and bring them home. Things get sort of blurry when you get generics shipped to you. If you go to China and buy a box of counterfeit Ray Bans sunglasses and bring them home to the U.S. to sell them, that’s illegal. It’s a breach of patent law. But, if you’re in the U.S., and mail-order one pair of counterfeit Ray Bans from China and have them sent to you for your own use, that’s not illegal. It’s the same with generic drugs. It’s the difference between buying something to make a commercial profit or for personal use. I help people buy medication for their own use; I am not selling it.”
Most of his work is giving people information, honest and reliable contacts in countries where they can buy generics, such as India, Bangladesh, Thailand, Australia and Honduras.
Why hasn’t Gilead gone after Jefferys? He said, “I was told by a Gilead insider that when I first started doing this, Gilead got advice from a ‘crisis manager’ who told them that if they went after me, it would just generate bad publicity for them and make a martyr out of me so, apparently, they have just decided to leave me alone.”
And it’s great that they did. Jefferys has gotten so involved in this issue that he was invited to the prestigious annual conference of the European Association for the Study of the Liver (EASL). Jefferys said, “It’s been nearly a year since I was sitting on a plane flying over central Australia on my way to Chennai in India to find generic sofosbuvir. So much has changed since then. A year ago, my body was wracked with the hepatitis C virus.”
His eyes grew sad as he relived his ordeal. “I was exhausted most of the time and spent hours in bed every day. My blood was poison and even my wife was scared of accidentally coming in contact with a drop of my blood. I was scared to play with my grandson in case I infected him.”
Now his HCV is completely gone. He can swim, or walk in the mountains, for hours. On April 6, he flew to Barcelona, Spain for the 2016 EASL Conference being held April 13 to 17. He shared his story to demonstrate how vital generic HCV medicines are, and was among top liver specialists including scientific researchers, medical experts, and advocates fighting for policy change on treating liver disease. Jefferys even co-authored a paper that was presented by Dr. James Freeman from the Department of Emergency Medicine at Royal Hobart Hospital in Australia.
Jefferys said, “I hope Dr. Freeman’s presentation made medical professionals, particularly liver specialists, aware of the importance of generics, especially the licensed Indian generic hepatitis C meds.”
Last year, Jefferys studied the 2015 EASL conference papers for up-to-date information on treating hep C. “It was a steep learning curve,” he said. “Before I was diagnosed in August 2014 I didn’t even know what hep C was.”
I asked Jefferys what he thought of Gilead’s defense that their profit margin is justifiable due to all of the time and effort put into research and development for these HCV medications. Jeffrey’s response? “That is just bullshit. They didn’t put any research into it. They bought a patent, a finished product, and they marked it way up.”
He has no problem with research companies making a profit, “but,” he said, “it has to be a fair profit.”
At the end of our interview I said, “You must have amazing karma now, after helping so many strangers.”
The Tasmanian Angel said, “It’s a privilege, isn’t it? You don’t get a chance like that often. I guess once you’re my age, you look back on your life. I’ve had a good one, so it’s a great feeling to be able to give back.”