Hepatitis C Buyers Club

Hepatitis C Buyers Club

By Dorri Olds 06/20/17

If the disease is caught in time, new drugs can completely cure hepatitis C. So what's the problem? The medication comes with an impossible price tag.

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Fix Hep C Man standing at keyshaped doorway with back to camera
Most people living with Hepatitis C are unaware that there is a more affordable treatment option. Photo via FixHepC

Gregg Allman and David Bowie both died at age 69. Allman died of complications from the hepatitis C virus (HCV). Bowie’s death was attributed to liver cancer. One of the main causes of liver cancer is HCV. Bowie, always candid about his drug use, said it nearly killed him. But there's a stigma associated with HCV. When Bowie’s friend and collaborator Lou Reed died in 2013, his death was blamed on liver cancer, too. Reed had HCV.

Boomers, and anyone who shared needles, even just one time, are in the highest risk group. The CDC estimates that 3.2 million in the U.S. have HCV, the silent killer you may not know you have. It lies in wait—slowly, methodically destroying your liver. But, if caught in time, new drugs can kill the virus. So what’s the problem? The cure comes with an impossible price tag.

Allman was diagnosed with HCV in 1999. He’d been exhausted and sleeping for 11 hours a night. In 2008, he found out he had liver cancer; then in 2010, he received a liver transplant. The body’s immune system will attack a transplanted liver as if it were a foreign object, so transplant recipients must take drugs that suppress their immune system. Anything that suppresses your immune system may lead to potentially fatal complications. Allman had an irregular heartbeat (atrial fibrillation), he’d had lung surgery, and contracted pneumonia.

Allman and Reed could’ve easily afforded the new ridiculously-priced treatments but the disease was not caught in time. My saving grace was that I’m 14 years younger than Allman, and didn’t have a rockstar lifestyle. I stopped drinking and drugging 11 years after I got HCV. They didn’t.

According to the Centers for Disease Control and Prevention (CDC), the number of deaths from HCV has reached an all-time high in the U.S. and now surpasses the mortality rate of AIDS.

In January 2016, the Affordable Healthcare Act (ACA) saved my life. Before the ACA, it wasn’t mandatory for insurance to cover those with a pre-existing condition and if I hadn’t had insurance, I would never have been able to afford the new miracle drugs that cured my chronic HCV. My doctor hoped he could get my insurance company to approve Harvoni (ledipasvir and sofosbuvir). With that medication, I would only have needed one pill per day for 12 weeks. But Harvoni, made by pharmaceutical giant Gilead, costs a whopping $1,175 per pill.

I burst into tears the day my doctor said, “Your insurance company refused to pay for it.” When I asked what their reason was he said, “You’re not sick enough—yet.” Luckily, my doc was willing to fight for me. After multiple letters of appeal, I was finally granted coverage. The drawback was that I would get the second choice: Viekira Pak made by AbbVie, plus ribavirin. That treatment cost “only” $84,000.

The concoction of nine assorted pills made me so sick I could barely function for the three months of chemotherapy. Don’t get me wrong, I am grateful. Not only was I cured but lucky enough to have had a loved one take care of me and monitor the doses. But, treatment with Harvoni would’ve been much easier.

Now that Obamacare is in jeopardy, and may be replaced by TrumpDoesn’tCare, more than 43,000 Americans may die annually. We’re in the worst drug epidemic in our nation’s history and already struggling with a shortage of treatment programs. For every 100 people that are infected with HCV, 85 are likely to develop chronic HCV, 70 will develop chronic liver disease; 20 will get cirrhosis after 20–30 years with the virus, and 1 in 5 will die from cirrhosis or liver cancer.

If you ever shared needles, or coke straws, or toothbrushes, or had blood to blood contact (not semen to blood), or received donated blood or organs before 1992, or got tattoos with non-sterile instruments, or if your mother had HCV while pregnant with you, please go get tested. It could save your life.

Meanwhile, in Australia, two humanitarians—Greg Jefferys and Dr. James Freeman—have refused to tolerate the status quo. As ardent advocates, they have saved thousands of lives. Finally, there is hope for those unable to pay the treatment costs.

 Dr. James Freeman and Greg Jefferys. Photo via Author.

In June 2016, Jefferys told me his story. He had received his HCV diagnosis in August 2014 and learned he’d had the virus since the 1970s. Dangerously close to cirrhosis, he knew he had to do something—and fast. The roadblock was the obscene cost of the meds. That’s when he began his relentless pursuit online. Finally, he figured out a way to save his life. India had generic drugs that were identical to the Big Pharma patented brands. And three months of treatment in India would cost him little more than the astronomical cost of one single pill here. Jefferys flew to India, was cured with generic sofosbuvir, and returned home. The entire trip, including the meds, cost him $4,000.

After his experience with these affordable and lifesaving generic drugs, he became determined to help others. He began spreading the word on his blog and website. In the beginning, he had no idea how many lives he would save. The response was so huge he created what he calls “a kind of international hepatitis C buyers club.” Remember Ron Woodroof (Matthew McConaughey) in the movie Dallas Buyers Club? Woodroof’s motivation was money. Jefferys' is not.

“I don’t want to profit from people’s sickness,” Jefferys told me. “There is enough of that going on already.” I dubbed him the Tasmanian Angel. He laughed, but being the modest fellow he is, changed the subject to tell me about Dr. James Freeman, another Aussie who runs FixHepC Buyers Club. Neither of these buyers clubs are actually selling medications. They guide you to sellers that are trustworthy. The buyer is you. The seller is the manufacturer. The importer is you. This allows the buyers clubs to operate legally.

The generic pills that cure HCV include the same ingredients as Gilead’s meds: Harvoni, Solvaldi, Epclusa; AbbVie’s Viekira Pak; Bristol-Myers Squibb’s Daklinza; and Merck’s Zepatier. And, like Jefferys, Dr. Freeman is eager to help as many people as possible but it isn’t for the money. He quoted a paper he’d written for Liver International: “The invention of DAA [direct acting antivirals] medication should be a cause for global celebration because it delivers the power to save millions of lives and virtually eliminate one of the five major causes of infectious disease worldwide. Sadly, for the majority of patients, these breakthrough medications remain unattainable.”

When I reached out to him for this article he responded right away. “It’s very important to tell your readers that Hep C is not picked up on routine blood tests. Unless you specifically ask for the test you have probably never been tested for it. And if left untreated, Hep C kills. It is not just liver failure and liver cancer. Heart attacks, strokes, kidney failure, diabetes, and blood cancer are all more common in patients with Hep C.” According to Freeman, the proportion of Americans with HCV who don't know they have it may be as high as 85%. 

My advice is to heed the following warning signs from this knowledgeable doc: “If you seem to be tired all the time and don’t seem to have as much zip in your step as friends the same age, it could be you have Hep C. If you have strange rashes, stomach upsets, funny tingling feelings, it could be you have Hep C. If you are depressed or seem to find it harder to organize your thinking because your brain seems fogged, it could be you have Hep C.”

In late 2015, New Zealand law student Hazel Heal was told by a doctor she’d run out of time. “I had that gun to my head,” she told me. "I had hepatitis C for 30 years and cirrhosis since 1999.” The cure was so expensive that she'd decided to sell her house to pay for it. But after reading about Jefferys, she contacted him. He put her in touch with Freeman and through the FixHepC Buyers Club she is now cured. 

Dr. James Freeman and Hazel Heal. Photo via Author

Now Heal considers it her “civic duty to contribute” by reaching out to all “hepsters” to spread awareness about the affordable generics. “There is enormous stigma associated with HCV,” she said. "I know what a burden of shame the vast majority live with. [Although] I have lived a very quiet and private life up to now, to be effective in reaching people I needed to surrender my privacy.”

Going public was worth it to her. “People now contact me from all over the world,” she said. "It’s very emotional but also satisfying because I know the relief, and recognize the anger, when people learn about why we need buyers clubs.” Before we ended our conversation, Heal said it’s been a remarkable year for her:

“I am cured. I have reversed the cirrhosis. I feel decades younger and made it into second year law!”

 


What To Do

Know the Facts: Even if you never injected drugs, were born after 1965, never received a blood transfusion, and don’t have tattoos—get tested anyway! HCV is a virus that does not discriminate. This is an infectious virus found in every corner of society. People from all walks of life carry this disease. You need to find out if you have it.

No Vaccine Yet: As with HIV/AIDS there is no vaccine yet to prevent infection.

Get Tested: HCV is not picked up on routine blood tests, so unless you specifically ask your doctor for the HCV test you have probably never been tested for it. 5 out of 6 people with the disease do not know they have it!

Follow Up/Get Your Results: If your blood test comes back positive, do not panic. The first question to ask is which HCV genotype you have—there are 6 genotypes and it is important to receive the most appropriate medication for your genotype. For more information see this page on FixHepC.com.

Call Your Insurance Company: Find out what they do and do not cover. If there is a possibility that they do cover the expensive brand name medications, they will most likely request forms from your doctor. 

If You Are Refused Coverage: My doctor sent letters of appeals. This can take time, so if your tests show that you already have liver damage, time is of the essence.

Contacts:

Greg Jefferys
Website: generichepatitiscdrugs.com
Email: [email protected]
Facebook: facebook.com/groups/281891622203711

Dr. James Freeman
Website: fixhepc.com
Email: [email protected]
Facebook: facebook.com/fixhepcbc

Hazel Heal
Facebook: facebook.com/profile.php?id=100008681522039
Email: [email protected]

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Dorri Olds is an award-winning writer whose work has appeared in many publications including The New York Times, Marie Claire, Woman’s Day and several book anthologies. She is currently working on a book scheduled for release in 2019. Find Dorri on Twitter, Facebook, and LinkedIn.

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