Never, never, never give up. ~Winston Churchill
Harvoni, the new hepatitis C drug that cured 94% to 97% of clinical trial subjects is here sort of… You may be able to get Harvoni if you have cirrhosis or your liver is just about there (stage 3 or 4 fibrosis). However, if you have severe renal (kidney) damage or your cirrhosis is so bad that you show signs of decompensation, then you aren’t eligible for treatment. Who is likely to have renal disease or decompensation? You guessed it – patients who have cirrhosis.
This means that you may be denied treatment if your liver disease is not very advanced or too advanced.
For those who are new to the discussion, here is a bit of background: The cost of Sovaldi (and by extension, Harvoni), triggered an outrageous cascade of events. Across the US, state Medicaid programs and insurance companies are trying to figure out how to pay for these hep C drugs. The American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America “inadvertently” restricted access to hep C medications by issuing guidelines giving treatment priority to patients who already have cirrhosis, or nearly have it. Healthy patients with minimal liver damage, and not obviously symptomatic may be treated if “resources allow.”
These guidelines led to stringent prior authorization criteria, and ultimately denial of treatment to many who have been waiting for treatment for decades. In addition to proof of severe liver damage, insurers want documentation that patients have abstained from alcohol and drugs for at least 6 months prior to treatment. Drug and alcohol screening may be required. This practice is disgraceful and not required for cancer or diabetes patients.
AASLD disavowed this practice:
Our recent addition to the Guidance prepared by a committee of leading liver experts from AASLD and The Infectious Diseases Society of America (IDSA) proposed that the sickest patients be treated first, but all patients who receive advice from their doctor to take newest medications should not be denied. The decision across the board should be in the hands of the clinician and the patient to make the decision. Unfortunately payers across America are denying treatment when a doctor has prescribed it for their patient. We adamantly disagree with this decision.
Our Guidance is not intended to be used by payers to deny access to treatment. In no way does this position contradict the evidence evaluated to produce the Guidance and the recommendation made in the Guidance to treat the sickest first, but recognizes need to treat all.
However, the practice is occurring, and doors to treatment are closing. It makes no sense to only treat those with cirrhosis, because by then, it is too late. Cirrhosis is largely irreversible, so although their hep C may be gone, these with cirrhosis are still very sick. Cirrhosis is an awful condition with debilitating symptoms, including dementia. There is risk of liver cancer and death, which are increasing at alarming rates. We don’t tell people who have diabetes that we will treat them after they already have nerve or retina damage. We intervene early, trying to avoid these horrors.
What You Can Do About the Hepatitis C Treatment Restrictions
Here are some suggestions for how to deal with the insurance and Medicaid restrictions:
1) Read your health 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.
2) 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.
3) Appeal all denials. Keep appealing. Don’t ever give up.
4) 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.
5) 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.
We will win this battle if we all help.