Starting Treatment for Hepatitis C

I was diagnosed with hep C in September 2007 and the severity was assessed with a liver biopsy in January 2018. I decided to get tested when, during a doctor’s appointment, it was mentioned that many people getting routinely tested since, at my age, I was in a higher risk group. I was keenly aware of being in a high risk group and had participated in high risk behaviors.

Why I got tested

It felt like it was time to move forward, address the unknowns, and definitively understand if I had contracted hep C. With a positive result and a biopsy that revealed my situation was not life-threatening, a non-aggressive genotype, and treatable, my doctor and I decided to not get immediately treated, but instead wait for a less disruptive option than those available at that time. My treatment, Epclusa (sofosbuvir and velpatasvir) began in late February 2017, ten years after my initial diagnosis. Epclusa became widely available on June 28, 2016.

Evaluating my treatment options

Initially, my information gathering was limited to my discussions with my assigned medical specialist, an ARNP in the Gastroenterology Department. She discussed the past, current, and the future treatment options, some still in the testing phase and might become available. This was helpful, as understanding the evolution of treatments gave a larger perspective and she made it clear that the options available in 2007 had severe side effects and low cure rates. She also was quite positive that several promising treatments would soon become available, and were, given my situation, non-symptomatic with a receptive genotype was worth waiting for.

Making a decision about treatment

Once Epclusa became a viable option, my doctor discussed the cure rates, side effects, risks, and costs and asked that I think it over and discuss it with my family before making my decision. Once I agreed to move forward, an extensive interview with a specialty nurse was assigned to my case to oversee and manage the treatment and provide extensive information during the remainder the treatment. My doctor recommended this option given my diagnosis and we didn’t really discuss other options. Later I did do some research on the internet to evaluate this and other treatments as information became available. Prior to receiving my treatment I had only told my wife of my diagnosis and hadn’t discussed treatment options or other aspects of disease with any other people.

Important considerations when starting treatment

For me, there are two considerations that would drive anyone’s decision about hep C treatment. First, will the treatment successfully cure the disease? The CDC states, “Over 90% of people infected with hepatitis C virus (HCV) can be cured of their infection, regardless of HCV genotype, with 8–12 weeks of oral therapy”.¹ Thus, for most people infected with hep C, a successful treatment is available.

The second point in the cost, as treatments are expensive. The figure for the full term Epclusa treatment in the US is $55,000-75,000 and approximately $60,000.00 in Canada. The same pill that costs $750-1,000 in the US costs $4 in India when purchased from generic manufactures.^2,3 These are significant and often unrealistic costs for those uninsured. For those insured, the costs are for the most part are covered by the insurer, depending on the policy. Most require a co-pay, in my case this was $75 per month for the medication. For people without insurance, there are private, state, and federal programs that offer treatments at a discounted or minimal costs; Healthcare providers can link those in need to these subsidized or discounted treatment rates. For example, the Virginia Medication Assistance Program (MAP) “provides access to life-saving medications for the treatment of HIV and related illnesses for low-income clients through the provision of medications or through assistance with insurance premiums and medication co-payments".⁴

Hep C treatment is a personal decision and the cure rates have improved greatly over the last decade. Costs remain an issue for many and overcoming the stigma attached to the diagnosis and treatment can still be an obstacle limiting treatment for some.