Last week I blogged about Harvoni, the new hepatitis C wonder drug. Unfortunately, Harvoni’s price is creating obstacles to hepatitis C treatment. Reacting to the cost of Sovaldi and by extension, Harvoni, state Medicaid programs and insurance companies are deny treatment to most except those who have cirrhosis, or are nearly cirrhotic with stage 3 fibrosis. Patients have been waiting years, sometimes decades for hepatitis C drugs that will cure them without practically killing them in the process. Now they may have to wait even longer.  

How do we justify this policy to Barb S who posted a comment to my blog: 
When on triple therapy, I was detectable at eight weeks with a very low (300) viral count. Undetectable at 12 weeks, they decided to stop all drugs at 36 weeks instead of 48. I questioned this deviation in protocol on several occasions but was told the decision was based on the Dr.’s experience with boceprevir. I’ve spent the last 2 years wondering if the relapse was due to a lapse in protocol.  

Naturally anxious to start hepatitis C treatment with Harvoni, Barb contacted her GI clinic and received the following rely:
We are still working out the details on how to effectively treat those needing treatment in the most efficient way. If you don’t hear from us in the next few months, call.  

This is wrong on so many levels. I’ll save my discussion for why it is wrong for another time, and concentrate on what you can do about this. Here are some suggestions for how to deal with the insurance and Medicaid restrictions:

  • Read your health plan, particularly if you are on a state Medicaid plan. Knowing what obstacles you may face will help you address them before you are denied. For example, if your plan requires documentation of abstinence from drugs and alcohol, you may be required to have a lab test to screen you for substances. I am adamantly opposed to this, but since the people who write these regulations are not asking for my opinion, then it is up to you to be sure you pass these tests. Beware that even a trace amount of marijuana may show up positive and trigger a denial. 
  • Be sure you tell your medical provider about your symptoms, including the severity of them. Some common hepatitis C symptoms are fatigue, brain fog, sleep difficulties, muscle aches, joint pain, headache, depression, and gastrointestinal complaints. 
  • Make a commitment to your health. It is very easy to feel overwhelmed by hepatitis C, especially in light of these obstacles to treatment. However, if you are going to fight for your right to treatment, then you need to be in shape. Eat right, exercise, get lots of sleep, and practice relaxation and stress reduction techniques. Avoid alcohol and drugs except when prescribed. Don’t ever give up. You are worth fighting for.
  • Complain, but complain to the right people. It may not help to complain to your healthcare provider, because they are upset too. You can complain all you want to me, but I am on your side. Complain to your insurance company and your state’s insurance commissioner.  Tell your congressional representative what you think. Write to the newspaper. Complain loud, in print, and often. 
Then go take a nap, or a long walk, or find something pleasurable to do. Don’t stew over this. We will fight this, and we will win, because hepatitis C treatment for everyone who wants it is good for everyone.