How to get the best treatment—without going broke…

Think that you’d never be affected by hepatitis C? That could be a dangerous assumption. Most of the roughly four million Americans who carry this virus don’t realize that they have it.

For those with hepatitis C, the good news is that the FDA recently approved new medications that eliminate the virus in nearly 100% of those who take them. That’s roughly double the cure rate of older hepatitis C medications—and without the dreaded side effects, such as debilitating fatigue, nausea, skin rashes, anemia and depression, commonly caused by ribavirin and interferon, long used as the standard treatments.

Here’s the catch: Many people can’t afford to take these powerful new drugs, which can cost more than $100,000 for a recommended course of treatment. What you need to know about hepatitis C and the new—but costly—medications…

GETTING TESTED

Up to 75% of the people infected with hepatitis C are baby boomers (those born between 1945 and 1965). For this reason, the Centers for Disease Control and Prevention recommends that all people in this age group get tested for the virus.

Remember: Many people with hepatitis C have no symptoms—jaundice (yellowing of the skin and eyes), dark-colored urine, fatigue and loss of appetite are among the red flags that can (but don’t always) occur during the acute (initial) or chronic (more than six months after infection) phase of hepatitis C infection. The only way to know if you carry the hepatitis C virus is to receive a blood test. Typical cost: Up to $150, which is usually covered by insurance.

Because it is a blood-borne virus, some Americans were infected with hepatitis C during blood transfusions or organ transplants that were done before the blood supply was screened for the virus. Others were infected by contaminated needles (from drug use—the most common cause—or tattoos) or, less commonly, from unprotected sex with an infected partner.

BEST TREATMENT OPTIONS

If you test positive for hepatitis C, you should talk to your doctor about getting treated. When choosing a drug, doctors look at viral genotypes (the specific type of virus that’s causing infection), along with the severity of liver disease and other factors, such as viral counts. New treatments…*

Harvoni. This drug, a once-daily combination pill that includes the antiviral drugs sofosbuvir and ledipasvir, is for people with hepatitis C genotype 1, which affects up to 75% of those who carry the virus. Depending on the severity of the patient’s liver damage, the medication costs about $63,000 (for an eight-week course) to $94,000 (for a three-month course). Side effects include fatigue, headache and insomnia, but they’re usually tolerable.

Viekira Pak. This “pak” contains two different pills—one combines the antiviral drugs ombitasvir, paritaprevir and ritonavir…the second pill is dasabuvir, another antiviral. Viekira Pak is prescribed for patients with or without cirrhosis who are infected with genotype 1. The cure rate for this medication is close to 100% for genotype 1b and about 95% for genotype 1a. Typical cost: About $83,000 to $168,000. Viekira Pak causes some of the same side effects as Harvoni. Note: Viekira Pak has been linked to liver failure, so the FDA has recently warned that it may not be appropriate for patients with advanced liver damage.

Sofosbuvir (Sovaldi) plus ribavirin. This drug combination is mainly used for patients with genotype 2 or genotype 3 infections, which account for about 20% of all hepatitis C patients. The cure rate is about 80% to 90%. Side effects are similar to those linked to Harvoni, plus possible anemia caused by ribavirin. Typical cost: $84,000.

COPING WITH COSTS

Most people who are exposed to hepatitis C develop a chronic infection that slowly (over decades) causes liver damage, so early treatment is preferable to avoid permanent liver damage. But for now, most insurers will approve treatment only for patients who already have advanced scarring or cirrhosis. Since cirrhosis increases the risk for liver cancer, it is better to get treated before cirrhosis develops. Note: Even though up to 80% of people who are prescribed one of the costly hepatitis C drugs are initially denied coverage, some of them may get the medication after repeated appeals. If you have hepatitis C…

Get tested for liver damage. Your insurer won’t pay for the new treatments until you get a needle liver biopsy (a small piece of liver is removed with a needle) to determine the extent and severity of liver damage. If a biopsy shows that you have some liver damage but not enough to get insurance coverage, you’ll have to make some hard choices—get another biopsy and subject yourself to a repeated invasive procedure or wait until symptoms develop, which indicates irreversible and advanced liver disease.

What helps: Even though health insurers require a biopsy, you can get some information about liver damage with a blood test or FibroScan, which is similar to an ultrasound. These tests aren’t as accurate as biopsies but can help your doctor decide if you need the more invasive procedure.

Ask about clinical trials. If you are denied insurance coverage and can’t afford to pay out of pocket, you might qualify to participate in a study that will provide the new drugs at no cost to you. Most hepatitis C clinical trials are done without a placebo group, so everyone participating gets medication. For drugs that have already been approved, sometimes the FDA will request Phase 4 trials to gather information on any side effects with long-term use. Consult your doctor or check ClinicalTrials.gov.

Look into PAPs. Pharmaceutical companies and other organizations sponsor patient-assistance programs (PAPs) that offer discounted drug prices for people without health insurance or for those with insurance who can’t afford prohibitively expensive co-payments. Your doctor will have information. Other resources —GoodRx.comHelpRx.info…and NeedyMeds.org.

*Caution: All of the direct-acting antiviral drugs can interact with other medications and supplements—tell your doctor about all the drugs/supplements that you’re using.