There’s a buyers club for people with hep C who can’t afford the price of traditional treatment. Here’s the story of the man who started it.
I always considered myself to be very healthy for a 60-year-old man, an opinion that regular medical checkups confirmed. But suddenly, in 2014, I fell mysteriously ill.
It wasn’t just the fatigue and trouble getting out of bed. I’d get bruises from the slightest bump. My nose never stopped bleeding. I had urine that stunk like rotten meat. That should’ve been a sign to see a doctor, but I was supposedly healthy. I chalked it up to some kind of weird flu until my wife finally forced me to see my doctor.
At the visit, I told my doctor about my symptoms. They decided to run a series of blood tests.
At the time, I had no idea what that meant. And actually, my doctor didn’t know that much, either. But they knew enough to tell me that I was very, very sick. They organized for me to see a specialist and to attend a hepatitis clinic in my home city of Hobart, Tasmania.
I learned that the hep C virus was the primary cause of liver cancer.
In fact, my liver had been extremely damaged to the point of cirrhosis. Cirrhosis is severe liver scarring that’s often seen at the last stage of liver disease. The liver specialist I saw thought there was a pretty good chance I had liver cancer, too. They said I wouldn’t have lived another year or two without treatment. Of course, my wife and three adult sons were in shock as well. (They all got tested. Fortunately, all the tests came back negative.)
Once I was over the shock of knowing I had hep C and that I hadn’t infected my family, the next big question was, “How did I get it?”
It turns out I almost certainly contracted hep C during a brief period of drug use when I was 19 or 20 years old through a shared needle.
Hep C can lie dormant for decades until some factor allows it to become aggressive. Often this factor is older age, which is why lots of people — who’ve been unknowingly carrying the virus for decades — suddenly get sick in their late 50s and early 60s.
In 2014, the only treatment option available was a combination of interferon plus ribavirin. But research showed that this treatment had a very low cure rate plus horrendous side effects. Upon more research, I discovered that a new drug called Sovaldi had just been released. It reported excellent cure rates with very few side effects.
Now, I wasn’t a poor man. But I wasn’t rich either, and $84,000 was enough to put anyone into never-ending debt.
That’s when I heard there was a generic version of Sovaldi about to be released… in India. This generic drug would be less than $1,000 for a 12-week treatment. So I used up the last bit of credit on my credit card to book a ticket for the beginning of May 2015.
I rounded up more cash by borrowing a few more hundred dollars from friends and family. I had a fairly tight schedule, no plans, and just hope.
Seven days in India to find a supplier of generic Sovaldi.
Buy the meds.
I flew into Chennai and stayed at a cheap hotel. I immediately began looking for a doctor or pharmacist from whom I could get the medicine.
Things work very differently in India.
These drugs are not sold in pharmacies. In fact, the average doctor there has no idea about them.
The clock was ticking and I was worried I hadn’t given myself enough time.
I’d been writing about my quest on Facebook in one of the hep C support groups. A man based in Thailand had been following my story. He messaged me and gave me the phone number of his friend, Sushil, who also lived in Chennai and had started treatment with generic Sovaldi.
As soon as I could, I phoned Sushil, introduced myself, and explained my situation.
Sushil, alarmed at the short time I had to organize things, begged his specialist to see me. Only a specialist could get a prescription, but in India, seeing a specialist meant waiting a week or two for an appointment.
Thankfully the specialist agreed and the next day I was leaving Dr R.’s office with a prescription for 12 weeks of generic Sovaldi plus ribavirin. I also had the phone number of the drug company rep who would supply the generic Sovaldi. While it seemed like so far, so good, I was still on a deadline.
There were only three days left before I had to get back on the plane.
I still needed to get over a language barrier and get my medication from Bangalore, which was four or five hours away from Chennai.
My supplier, Mr. Lakshmidasan, spoke little English. Through bad phone connections and miscommunications, it took another day to place the order and authorization to supply.
The next morning, I waited in the hotel lobby for about an hour until a guy arrived with a receipt.
And no drugs.
He spoke no English, either. The hotel staff translated and informed me that I had to give him 60,000 rupees in cash first. He’d come back with the medicine later.
I didn’t want to do it.
But it was my only choice.
Two hours later he returned but with only eight weeks of Sovaldi and no ribavirin. Apparently, they were low on stock and the balance of the order would be in the warehouse in the morning … the morning of the day I was supposed to fly out of Chennai. Without ribavirin or the full treatment, this medication was useless.
To say I was a little agitated at the time was an understatement. What would I do?
Night passed and the morning came. Exactly at 11 a.m. my friend delivered and I received the remainder of my medication. At 1 p.m., I checked out of the hotel and caught a taxi to the airport.
It was very close timing — but all is well that ends well.
Now, at 63 years old, I’ve been cured of hepatitis C for nearly two years. I’m still profoundly humbled and grateful for the kindness of strangers. Over the intervening two years since my hurried trip to Chennai, I’ve dedicated most of my time to increasing awareness of the effectiveness of Indian generics for treating hepatitis C and helping people acquire those drugs by whatever means they can.
To that end, I’ve been writing on a blog and website that provides information to people with hep C. I’ve also started a Facebook group called Hepatitis C Treatment w/o Borders, which now has over 6,000 members.
I get 60 or more emails every day of the week from people all over the world asking for assistance. Because of the help I’ve gotten, I’m eager to help others.
I provide a complete service for people who want to buy generic hep C medication. From organizing documentation to purchasing from a licensed manufacturer, I also include guaranteed delivery to anywhere in the world. For this I charge a fee that’s 20 percent of the total cost, which adds up to $1,000 per 12-week treatment of generic Harvoni or generic Epclusa. This is a fraction of the current cost.
For people who are in need, I remove my fee and send the treatment for face value of $800. Sometimes I go even lower to $600 for people who truly need the help.
Everything goes back to my mission of doing the best I can to help all people access treatment. In my very small way, I’m trying to provide a balance against the obscene greed that comes with big pharma and healthcare.
Sometimes it still surprises me to get so much negativity from doctors, particularly in the United States. About 70 percent of people who contact me from the United States say their doctors are mildly suspicious to outright hostile when it comes to taking a generic treatment — even when there are no other options available.
Fortunately, over the past two years, I’ve connected with many doctors who support my mission in the United States and around the world. It’s thankfully still possible and easy to find a person — from doctors to patients — who still care about health and not the bottom line.
Disclaimer: Buying medication from alternative sources puts you at a higher risk of receiving fake and expired medication. Talk to your doctor about your prescription and options for payment before seeking out other sources. If you and your doctor can’t agree, find a second opinion.
Since 2015, Greg Jefferys has supplied more than 1,000 Australians with life-saving drugs from India. He runs a blog on Facebook and has appeared in HepC Mag, CNN, and many more outlets for the work he’s doing with his buyers club.