THE BLOG

What We Talk About When We Talk About Hepatitis C

Since 2007, more people have died every year from hepatitis C than from HIV. Fortunately, the latest hepatitis C medications can cure nearly everyone in a relatively quick, easy fashion. So, if it is so easy to cure hepatitis C, why haven't we?

Ostensibly, it is because of the cost. At $1125 a pill for Gilead Sciences' drug Harvoni, a 12-week course of hepatitis C treatment would amount to $94,500. Trying to manage these costs, many state Medicaid programs and insurance companies have severely restricted access to treatment. You save money if you deny treatment to people, and dead people cost nothing.

This means that although we can cure hepatitis C, we aren't. Under many insurance plans, patients have to prove that they have cirrhosis. In short, treatment is approved when liver damage has progressed to its worst stage. It is like refusing to pay for diabetes drugs until the patient is blind or minus a few toes.

In addition to proof of cirrhosis, insurers create hurdles that require mountains of paperwork and patience. Some require documentation that patients have abstained from alcohol and drugs for six months to a year prior to treatment. If substance use is recent, patients must be actively participating in treatment for the disorder. This practice is not required for cancer or diabetes patients. Imagine if your doctor said to you, "We can cure your cancer, but your insurance won't pay for treatment because marijuana showed up on your tox screen."

There are other hurdles. For instance, Illinois's Medicaid plan has 17 bulleted requirements, including a "commitment to care" document to be signed by the patient. Alaska's Medicaid program has invented its own hurdle that is not medically approved. The hep C drugs will not be renewed if a patient's response doesn't meet these arbitrary standards, despite the fact that the HCV treatment guidelines set by the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America do not recommend stopping treatment for this reason. But, insurers are not following these evidence-based guidelines, since if they did, they'd have to treat just about every hepatitis C patient, which is what the guidelines recommend.

The fear is that if everyone were treated, then the cost would be astronomical. However, the cost of treatment is not really the issue. What we are really talking about when we talk about hep C is prejudice. Hepatitis C's association with drug use makes it easy to discriminate against those who have this disease. Health plans can get away with their arbitrary restrictions, because the public isn't particularly sympathetic to hepatitis C patients. Ask Jane or John Q. Public how people get hep C, and I bet they say it's from drug use, a problem which is highly stigmatized.

I am familiar with the stigma attached to this virus. Although now cured, I was hep C-positive for 25 years. I was open about my status, and most people assumed that I got hepatitis C through my work as a nurse, thus sparing me from the harsh criticism drug users often get. However, occasionally I endured cruel judgments from critics who assumed that I was an injection drug user, and thus I deserved hepatitis C.

It is common to hear fellow hep C patients complain about being treated like injection drug users. The tragedy is not that hep C-positive people are lumped together with drug users. The tragedy is that it is socially acceptable to condemn and ostracize drug users. Private and public insurers participate in this social ostracism by restricting access to treatment, hurting the poor and minorities the most with these unjust practices.

Treatment restrictions ignore the fact that those with hepatitis C are at increased risk of premature death from multiple medical problems, including, lymphoma, cerebrovascular conditions, cancer, and kidney diseases. On average, hep C patients die around 15 years earlier than those who aren't infected. Hepatitis C is a risk factor for liver cancer, which has the second highest mortality rate, just behind pancreatic.

How do we explain these restrictive policies to a young woman with minimal liver damage, but wants to be free of hep C prior to starting a family? Do we tell her, "Take a chance, maybe your baby won't get hepatitis C. We can always treat you and your baby when you each develop cirrhosis."

Access to hepatitis C treatment affects everyone. If we ration health care for this disease, it is just a matter of time before we ration coverage for other diseases. Paraphrasing Martin Niemöller's famous words, "First, they denied treatment for hepatitis C, and I did not speak out because I did not have hepatitis C." How many more people have to be infected or die from hep C before we speak up? Or, do we have to wait until we restrict medical coverage for all diseases, and perhaps lose a few toes before we protest.