Epclusa, the newest hepatitis C treatment, was approved in June. New medications to treat hepatitis C virus (HCV) infection are rolling out quickly, and Epclusa is the most exciting treatment so far. If you haven’t had a chance to take in the full significance of Epclusa, look at the newly revised HCV Guidelines, provided by the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA), in collaboration with the International Antiviral Society–USA (IAS–USA). Peginterferon is not recommended for anyone now, and there are quite a few ribavirin-free treatments.

Epclusa has the highest cure rates, and can be used by nearly everyone, so one would think that treating hepatitis C would be straightforward. Unfortunately, it isn’t. First, there is the problem of which drug is on your insurance formulary. Epclusa may not be covered. In fact, you may find out that your insurance company will only cover Viekira or Zepatier, drugs that are a bit more complicated to take than Epclusa.

The other problem is that there are still issues with some private and state insurance plans refusing to pay for treatment. Most weeks I get an email similar to this one, “I have hepatitis C and my insurance denied coverage for treatment.” This is usually followed by, “I don’t know what to do. I feel like I’ve been sentenced to death,” or “I am thinking about ordering overseas generic hep C drugs. Is this safe?”

My response to either of these two scenarios is always the same: “Did you appeal the denial, and are you working with a patient assistance program (PAP)?” The response is always the same, “No.” That “no” is usually good news, because between working with a PAP and appealing the insurance denial, people are often able to get coverage for treatment.

Before you start searching the web for generic drugs, try these tips for getting hepatitis C medications:

  • Know what the HCV recommendations are, “Treatment is recommended for all patients with chronic HCV infection (emphasis mine), except those with short life expectancies that cannot be remediated by treating HCV, by transplantation, or by other directed therapy. Patients with short life expectancies owing to liver disease should be managed in consultation with an expert.”
  • When possible, try to work with a provider who has experience with getting drug approvals. The GI practice in my small mountain town works with a specialty pharmacy with a great success record.
  • Work with a patient assistance program (PAP). The HCV Advocate provides a resource list with reliable PAPs. My current favorite is the Patient Advocate Foundation’s Hepatitis C CareLine. They will also work with your medical provider, so it is worth mentioning to your doctor that the CareLine offers case management services.
  • If the treatment your doctor prescribed for you isn’t on your plan’s formulary, consider changing insurance plans during the next open enrollment period. The Patient Advocate Foundation’s Hepatitis C CareLine. keeps track of formulary changes, and will provide that information to you.
  • Check out the National Viral Hepatitis Roundtable’s (NVHR) Hepatitis C Treatment Access page. NVHR provides templates for letters of appeal that your provider can use, as well as links to helpful resources.
  • Document everything. Write down who you talked to and when.
  • Keep trying. Each time there is a lawsuit, insurance companies and state Medicaid programs are confronted with the reality that if they don’t change their restrictive policies, they may be sued. As a result, there have been quite a few revisions to hepatitis C treatment requirements.
  • If you have trouble accessing treatment through your state Medicaid program, report this to NVHR.
  • Don’t despair. Despair serves no one. It will steal all the life out of you and will not help you get your hepatitis C medications. The “system” may deny your hepatitis C treatment, but don’t let them also have your precious joy.
  • If you have it in you, consider a lawsuit. A number of people have won their suits, opening the door to access to hepatitis C treatment for others. NVHR has a webinar about some of these successes. Read Valerie Green’s story, a woman who was instrumental in getting the state of Delaware to change its restrictive Medicaid policy.
  • Join a support group. The appeals process can be frustrating. A support group can help keep you fortified and focused.

The reason I am so adamant about fighting for coverage is that if everyone gives up, the situation will not 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.

Even more important, we have to fight because our lives depend on it. To borrow words from the late Elie Wiesel, “There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.” 

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 August 2016 and is reprinted with permission.