Hepatitis C was destroying Australian Greg Jefferys’ liver. In 2015, Sovaldi and other new direct-acting antivirals were unavailable in his country. Greg could die or fly to India, and obtain hep C treatment using generic medications. He chose the latter and is now cured. However, that is just the beginning of the story. Greg used his experience to help countless others in the world, starting a cascade of events that opened the door to treatment for all Australians.

This month I provide information about obtaining generic hepatitis C drugs from outside the U.S. This is the most controversial subject I’ve ever discussed in my Healthwise column. The opinions expressed here are strictly my own and not necessarily shared by the HCV Advocate or its staff.

I am risking my reputation. However, it’s a risk I am willing to take as long as physicians, state Medicaid programs and insurance companies continue to deny hepatitis C treatment to their patients. My reputation seems small compared to the health of my fellows with hepatitis C.

Before you compose hate mail or type “generic hep C drugs” into your search engine, please read the following:

  • Hepatitis C treatment should always be medically supervised, regardless of where you purchase the medication.
  • My remarks only pertain to hepatitis C generics, and should not be generalized to other medicines.
  • I am not endorsing the use of a particular hepatitis C drug, generic or brand name.
  • Never buy medication from a source unless you completely trust it.
  • Generics should be a last resort option. If you have health insurance, pressure that plan to pay for your treatment. It’s wrong of insurers to deny treatment, and as wonderful as a trip to India or Australia sounds, you have the right to get these drugs in the U.S. from the company who covers you. If treatment is denied, pester them with appeals before accepting a final refusal. If treatment was denied last year, try again this year. If you don’t have medical coverage, get help from a patient advocacy program. Resources to help you fight for coverage are provided at the end of this article.

The reason why I want you to fight for coverage is that if everyone gives up, the situation won’t change. If insurance companies have to pay for hepatitis C treatment, they will complain about the price to the drug companies. If insurance companies keep denying treatment, the drug companies won’t sell their drugs. Either way, the price is likely to drop, and access to treatment may improve. Australia is a beautiful example. A year ago, Australians didn’t have Sovaldi, let alone Harvoni. Beginning in March, the latest drugs will be available without restrictions to all Australians, including the incarcerated.  It will cost up to $37.70 per person. Access is granted regardless of level of liver damage and substance use. Australia wants to eradicate hep C in one generation.

My Fears about Generics

People die while taking hep C drugs. These deaths may be unrelated to their treatment, but nonetheless, it leaves one to wonder. I am afraid that someone is going to die while taking generics. However, I also fear that people will die or suffer needlessly because they aren’t able to get treatment. On average, more than two people die every hour in the U.S. from hepatitis C. We have to do something.

I am concerned that people will take phony hepatitis C medications, or even worse, contaminated ones. All generics are not equal. If you go down this road, it is critical that you purchase from a reliable source, test before you ingest, and take your medication as prescribed. In addition to being medically monitored, you need to know:

  • That the hep C drug is appropriate for you and not contraindicated
  • What medications can interact with your hep C drugs
  • How to take the medication prescribed for you

Importing Generic Hepatitis C Medications

Is it legal? It depends on your interpretation of the FDA regulations, but my sources say yes. Here is what the FDA says:

..it typically does not object to personal imports of drugs that FDA has not approved under certain circumstances, including the following situation:

  • The drug is for use for a serious condition for which effective treatment is not available in the United States (my note: if you can’t get it, then it isn’t available);
  • There is no commercialization or promotion of the drug to U.S. residents;
  • The drug is considered not to represent an unreasonable risk;
  • The individual importing the drug verifies in writing that it is for his or her own use, and provides contact information for the doctor providing treatment or shows the product is for the continuation of treatment begun in a foreign country; and
  • Generally, not more than a 3-month supply of the drug is imported.

How do I know that I am getting quality medication? As of this moment, the only source I trust is the FixHepC Buyers Club. They don’t sell medication directly, but they help you buy it, have it tested, and then delivered. I have communicated directly with people who have used the Buyers Club, and I have not heard anything negative. Note: Treatment with generics is likely to have the same response rate as brand name drugs, which means that some people will fail treatment. Dr. James Freeman of the Buyers Club is conducting research using generics.  

How much will it cost? Depending on what you need, and for how long, between $1050 and $1700 USD.

How do I do it? Contact the FixHepC Buyers Club and follow instructions.

  • Get a prescription for the required medication from your doctor. You can use the online doctor service GP2U Telehealth in Australia, but I am adamant about having a U.S. doctor too.
  • Send the prescription, the authorization agreement, and your payment to the Buyers Club.
  • Your tested medication will be shipped to you.

Medical travel

Perhaps like me, you don’t want to fork over your credit card to a stranger and trust that Fed Ex will deliver the precious medication. You would rather fly to Australia or India, and return with the goods. India is cheaper to visit than Australia is. If travel to India is your first choice, contact Greg Jefferys (see Resources).

Here is how medical travel to Australia works: contact the Buyers Club and tell them you are interested in travel to Australia. Likely they will suggest you go to GP2U on the web and make an appointment with Dr. James Freeman, an Australian online medical consultant. Freeman has been doing telemedicine for a long time, and this service will walk you through the steps. Again, I can’t overstress the importance of also having a U.S. medical provider who will follow you when you return. 

When you book a flight to Australia, plan on a 5-day stay. Australia requires a visa, called an ETA. Australia is a wonderful country, and personally, if I was travelling that far, I would go for at least 3 weeks. However, if you are really pressed for time then you can speed this process up to 3 nights.

Working with Your Doctor

This may be your biggest obstacle. Doctors are uncomfortable with unknowns, and they have taken an oath to “Do no harm.” If you are injured or die, they don’t just worry about being sued; they worry about you and your family. If they work in a group practice, they could lose their job. A doctor who prescribes generics may be hard to find.

However, your doctor may be frustrated by insurance denials and worried about you. If your doctor is unwilling to write a prescription, ask if he or she will follow you if you obtain a prescription outside the U.S. If they need more information, give them a copy of this article.

Mike Galbraith, a high school teacher in Arkansas took generics with the support of his physician. It’s too soon to know if he is cured, but so far, he’s on track. Fortunately, he had the resources to obtain generics, which is not a choice for those with limited incomes. However, it horrifies me that it was his only option. There is something deeply wrong when a person can’t get treatment for a curable disease because health plans decide who can and who can’t. However, we wouldn’t be in this position if hep C medications were more reasonably priced. Maybe insurance companies should think about branching out into travel medicine?

 

Resources to Help You Obtain Generic Hepatitis C Treatment

FixHepC Buyers Club 

Greg Jefferys’ blog

Patient Advocate Foundation’s Hepatitis C CareLine

Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. She blogs at www.LucindaPorterRN.com and HepMag.com This article originally appeared in the HCV Advocate February 2016 and is reprinted with permission.