Watch Dying for Medicine in America, on SBS OnDemand
When Greg Jefferys started smelling like rotten meat, he finally conceded that he needed help.
“I’d get nose bleeds; slightest scratch I would bleed, small bumps I would bruise,” Greg Jeffreys told SBS Dateline.
“I was nauseous a lot.
“You feel like you're decaying inside, it's really awful.”
It was 2014 and the then 60-year-old had just been diagnosed with chronic Hepatitis C, a blood-borne disease which attacks the liver. Without action, it can be fatal.
At the time, the only treatment option available in Australia was a risky interferon-based therapy “worse than Hep C,” with a host of side effects, including autoimmune diseases, stroke and permanent liver damage.
“It's toxic and I thought, I'm not going to do that,” Jefferys said.
“Then I found out about this new drug, that had a high cure rate and less side-effects, but it was $100,000 for a treatment.”
Manufactured by pharmaceutical giant Gilead, the hefty price-tag was unaffordable for Jefferys, forcing him to desperately search for an alternative.
“It's like being in the desert and dying of thirst and being able to see water, but knowing you can't get to it,” he said.
“And then I heard there was going to be a generic version possibly released in India.”
With his condition deteriorating, there wasn’t a second thought.
“My whole life revolved around the possibility of getting this generic [called] Sovaldi.
“I maxed out my credit card, borrowed some money from friends and flew to India a week after it was released.”
Comparatively, the price was $1000 for a complete 12-week course of treatment.
“The effect [of treatment] is so profound and so fast,” Jefferys recalled.
“I went from feeling like I was rotting away inside to [that being] totally gone in a week.
“Yet because people haven't got enough money, they can't get the treatment - and it's wrong.”
The buyers club
Cured by the end of the course, Jefferys felt the need to help others in the same situation.
From his humble home office in Tasmania, he started a hepatitis C buyers club.
Operating mainly through a Facebook group, Jefferys acts as a middleman between his supplier in India and Hepatitis C patients from all over the world. He even keeps a small stash of Hepatitis C medication in his laundry for people who are desperate.
“I've felt the hopelessness, I've felt the weight of something living inside you that is slowly killing you,” he said.
“Medicine shouldn't be about making huge profits, medicine should be about giving people health.”
Selling the generic treatment for as little as $350 US, Jefferys receives over 100 emails a day from prospective clients. Among these messages, Jefferys has already received a cease and desist letter from Gilead.
“It's a [legal] grey area,” Jefferys said.
“Some countries it's no problem other countries it's definitely illegal.
“Canada, it's illegal, USA again it's grey, but I certainly would never go to the USA for fear of being arrested or chucked into a jail there.”
For Jefferys, the moral fight to keep people alive through affordable medication overrides any fear of repercussion. He says, about half of the emails he receives are from America, where Hepatitis C kills more people than any other infectious disease.
“It’s an incredible tragedy,” Jefferys said.
“People from the USA, supposedly the richest country in the world are in the same position, or sometimes a little worse than people from Nigeria or the Philippines, in third world countries.”
With prescription drug prices soaring across America, those who are uninsured or underinsured are often left to their own devices.
A lifesaving connection
In Florida’s Vero Beach, Elmer Massey has been living with chronic Hepatitis C.
“I’ve had it for five to ten years from what the doctor was saying and didn’t even know it,” he told SBS Dateline.
“My doctor said [I could have contracted Hepatitis C] either from my past intravenous drug use or from maybe home-made tattoos.”
Now 34-years-old, he has been clean for four years and his priorities have shifted. His greatest concern is his eight-month-old son.
Although the disease causes him to feel generally fatigued, the contagious nature of Hepatitis-C has Massey most worried.
“One of the things that I have to be most careful of is even moving around a lot in the house, because if per say I catch myself on a nail or something and I start bleeding, he’s teething right now, so he’s kind of got open wounds in his mouth.
“That would be like a one-way ticket to get it.”
Having been denied insurance coverage, Massey says he could never afford treatment in America.
“It would be about $20,000 to $100,000 US, which is insane.
“That’s enough to put someone through a full tuition of college, enough to buy a house.”
Joining the a hepatitis C buyers club Facebook group, Massey connected with Jefferys and has since received his 12-week treatment.
“He’s an angel put on earth, there’s no way around that,” Massey said.
“I’m doing it on blind faith.
“If I don’t take these [pills], I may as well dig a hole out the front and put myself in it.”
Dateline contacted Gilead for comment but they did not respond in time for publication.