Spotlight: My Epclusa Treatment Story

In this article, HepatitisC.net advocate shares his experience with Epclusa for hep C treatment. Daniel was diagnosed with hep C genotype 2b in 2007. He was declared hep C free in 2017.

What hep C treatment did you use and how long did treatment last?

I was diagnosed with hepatitis C genotype 2b in 2007. I had contracted it in the late 1970’s or 80’s. Immediately after my diagnosis, I was assigned a doctor from the gastroenterology department of my health provider who specialized in hepatitis treatments. We discussed the available treatments at the time and many were not significantly more advanced than pegylated interferon-alpha with ribavirin, a treatment frequently not effective and that had troubling side effects.

Understanding that research in hep C was becoming more robust, and that promising alternative treatments were emerging, we agreed to wait until better options became available. I was asymptomatic and under no immediate pressure to enter treatment, but was committed to receiving treatment as soon as an appropriate option became available. I had liver biopsies every 5 years to monitor the disease.

By 2016, several new treatments had emerged and one, Epclusa (sofosbuvir and velpatasvir) was highly effective for my genotype with a 90% success rate and minimal side effects. The treatment was chosen and vetted and the payment totaling $70,000 was approved by my insurer. The treatment was 1 pill everyday for a 3 month period. The treatment was heavily monitored by a specialized nurse who communicated with the insurance company and had follow ups every 2 weeks with me to ensure all pills were consumed on schedule and none ever missed. I had travel planned during the treatment that extended beyond the 30 days of allocated medicine and the nurse had to make the case for an advanced supply to cover the days away that was approved.

What side effects, if any, did you experience during, immediately after, or following treatment?

The only immediate side effect during treatment was minor tiredness. It was slight enough that I didn’t miss work or any routine activities. Once the treatment ended, there were no side effects and none have emerged in the past 3 years.

What is your advice for anyone who was recently diagnosed with hep C or about to start treatment?

Once diagnosed with hep C, educate yourself about the differing genotypes, their unique properties, and appropriate treatments. I didn’t know there were so many and had little knowledge of the illness, its variabilities, or knew much about the treatments. My doctor was very accessible and clear so that was a big help and comfort.

I had good insurance so that also determined many of my decisions that might not be available for others who are without or have less supportive insurance policies. Explore the treatment options and, if possible, commit to one if the side effects are not damaging. My attitude was that being hep C free was a better health condition and eased my frame of mind once I had been diagnosed with it. As described, the treatment had minimal effects on lifestyle, work, or travel. It was very expensive, but liver damage can be non-repairable, surgery and transplants are risky and difficult, thus treatment seemed to be the best option. There is a chance that my hep C would have never become active or debilitating, but given the success rate and modest side effects of the treatment, I believe it was worth enduring.