What to Do If Your Hepatitis C Treatment Coverage Is Denied

High Price of Hepatitis C Medications

Doctor comforting patient during consultation
PhotoAlto/Ale Ventura/Brand X Pictures/Getty

Suppose you are a person with hepatitis C, perhaps recently diagnosed, and inquire about treatment options. What is the possibility that your treatment will be denied and what can you do about it?

Your doctor should discuss several aspects of your hepatitis C to determine the best treatment.  These should include a discussion about your hepatitis C viral load (the amount of hepatitis C virus RNA in your blood), the genotype (strain) of the hepatitis C virus, and the amount of liver scarring (fibrosis) that you may have.

The virus load is important to provide a baseline level of virus from which to measure decline and eradication, and also to potentially choose a shorter duration of therapy if this level is low. The genotype provides a roadmap for choosing the specific regimen to employ since many of the therapies are specific for one genotype or another. The amount of liver fibrosis tells your doctor a bit about the urgency of treatment: the more scarring, the more urgent the need to treat since more scarring can mean a greater risk of cirrhosis or liver cancer.  In general, it takes up to 20 years or more to develop cirrhosis and some people will never develop cirrhosis in their lifetime. The amount of scarring can now be assessed quite accurately even without liver biopsy using specific liver scans and/or blood tests.

Finally, it will be important for you to alert your doctor to any new or unusual symptoms or disorders that may possibly be related to the virus infection.

  Hepatitis C has been known to be associated with the development of diabetes mellitus, cardiovascular disease, kidney disease, pronounced fatigue and skin rash, among others.  The presence of one or more of these conditions, even if liver scarring is mild, may signal a need for urgent treatment. 

Because so many people in the United States have hepatitis C (over 2.7 million), and many have failed prior treatment, there has been an avalanche of cases requesting treatment (https://www.washingtonpost.com/national/health-science/medicare-spending-for-hepatitis-c-cures-surges/2015/10/16/00183d98-741b-11e5-8248-98e0f5a2e830_story.html).

The extraordinarily high price of hepatitis C medications has meant that many health care agencies have invoked a form of rationing to limit their expense exposure, particularly over the past 1-2 years (http://america.aljazeera.com/articles/2015/10/16/insurance-providers-deny-hepatitis-drugs.html).  Many have limited approval to those with more advanced liver disease.  Some have approved medication for those with lesser degrees of liver scarring (fibrosis) if they have other hepatitis-related symptoms. Even with these expanded criteria, almost 40% of patients will be potentially excluded or denied therapy http://www.scientificamerican.com/article/we-now-have-the-cure-for-hepatitis-c-but-can-we-afford-it/

What the options for those who are denied?  For those with poor or inadequate insurance coverage, the manufacturers have patient assistance programs that have provided free medication for up to 10,000 patients in 2014. Health care providers should be able to connect patients to manufacturer representatives to determine qualification for free medication (http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/).

In some circumstances for those adequate insurance but denied due to less severe disease activity, an appeal may be possible.

Occasionally, a good case can be made based upon hepatitis associated symptoms which may interfere with work and lifestyle.  For example, some patients have such profound fatigue from the infection that they had requested disability payments. Effective treatment may reverse these symptoms and allow a more productive work and personal life.

Some patients with mild liver disease may have other conditions, such as cryoglobulinemia (a form of skin rash and occasionally kidney disease caused by the hepatitis C virus) that responds well to current treatment of the hepatitis C virus. Check with the AASLD/IDSA hepatitis C guidance (www.HCVguidelines.org) to see if you may have one of these other associated conditions.

Finally, some patients have traveled to other countries where the price of these medications is substantially cheaper to obtain therapy. This decision, however, comes at some risk since it is important to determine that you are receiving the correct and unadulterated medication. In a future article, I will discuss this aspect of medical tourism more fully.