The fight against hepatitis C

An inside look at hepatitis C patient advocacy organizations

A diagnosis of hepatitis C, caused by the hepatitis C virus (HCV), doesn’t mean you have to face it alone.

As the executive director of the patient advocacy organization, the Hepatitis Education Project (HEP), as well as a former chronic hepatitis C patient, Michael Ninburg knows first-hand what a diagnosis of HCV can mean for patients.

When a person is diagnosed with hepatitis C, the support of a community can help them get through the experience.

Patients can find this much-needed community within HCV patient advocacy organizations,

including HEP, which offer people living with HCV access to a full spectrum of services and information.

These organizations provide patients and their loved ones with resources that can include

emotional and/or financial assistance

information on treatment options

information about clinical trials

educational outreach around prevention and early detection

Our role is to meet with clients who have been diagnosed with chronic hepatitis C and help them in every step of the process.

– Rachel Nickel, medical case manager with HEP

According to Nickel...

We help them find a primary care physician; we let them know about tests their health care provider may request, for example, to find out their genotype.

We help ensure they get a referral to a liver specialist. We help them get to their appointments if they need that kind of help.

We talk to them about the different kinds of results that they may have received and help them develop questions to ask their health care provider about the different kinds of treatments.

Ninburg refers to patient advocacy groups as “navigators, support systems and allies” in the patient fight against chronic hepatitis C. “It’s really important to us to be by their side in order for them to obtain fair access to medical treatment,” he says. Kyon, a HCV-positive patient who is currently working with HEP to gain access to treatment, agrees. “I'm grateful for having advocacy organizations because there are a lot of roadblocks to go through with a diagnosis. If you don’t have anybody there with you, it can be very daunting and very challenging. You can feel very alone.”

Hepatitis C infographic

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