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My experience with HCV infection most likely began with a blood transfusion I received at birth. I learned that I had HCV infection much later when I donated blood as an adult. Despite having a risk factor for HCV infection (blood transfusion before July 1992), liver function tests showing values at the high end of normal, and guideline recommendations at the time for risk-based HCV screening, I had never been offered a test for HCV, demonstrating the shortcomings of a risk-based screening approach. Although US guidelines today recommend universal HCV testing for all adults, without widespread implementation of the guidance, many HCV infections likely remain undiagnosed. It is critical that healthcare professionals (HCPs) understand the importance of offering every single patient in their care a one-time opportunity for HCV screening, and more frequent screening if there are ongoing risk factors.
I was fortunate that when I was diagnosed with HCV, I had only mild liver inflammation and not advanced fibrosis or cirrhosis. I was less fortunate in being diagnosed at a time when standard-of-care treatment was still peginterferon plus ribavirin, a combination with considerable toxicity and fairly low efficacy. The treatment experience was awful, but I did not want to have a lifelong infection that was harming my liver and could dramatically reduce my quality of life over the long term. I was very sick during treatment, but I powered through and continued working. People often compare interferon-based therapies to chemotherapy, and my experience was similar, including losing my hair, which did not occur until after the treatment was over. The most difficult part was finding out that the treatment had failed and I still had chronic HCV infection.
Direct-Acting Antiviral Therapy
My luck changed dramatically in 2014 when oral direct-acting antiviral (DAA )HCV therapies finally became available. The experience was entirely different from interferon—no injections, just oral pills once daily for 12 weeks. I had almost no side effects (occasional headache) and, of most importance, I was cured of HCV infection!
I urge HCPs to encourage treatment for all their patients with HCV infection. I would also recommend that they talk with patients who are hesitant to receive treatment about what reservations they may have. Having received both earlier-generation treatment with interferon and modern therapy with DAAs, I can understand why anyone who has either had interferon-based treatment or known of anyone who had it may be extremely unwilling to consider HCV therapy of any type. It is important to explain to patients in this situation how completely different DAA treatment is from interferon. If possible, connect them with patients who have received DAA therapy so they can hear from someone about their first-hand experience. Even better would be for them to speak with a peer who has received both interferon-based and DAA therapy—someone who can attest to the difference.
Life Post HCV Cure
Another benefit of speaking with a patient who has been cured of HCV infection is the counseling they can provide about what life is like “post HCV cure.” HCPs can also provide this counseling if they have learned from their patients’ experiences, but patients who have been cured may not been seen again by the HCP who provided their HCV care.
It is essential that people who have been cured of HCV infection understand that they may still face some challenges in healthcare settings because they will remain positive for antibody to HCV for the rest of their lives. For example, if they become pregnant and the prenatal clinic does not have their full medical history, they may be concerned if the clinic follows guideline recommendations for universal HCV screening in pregnancy and sees a positive result. The patients would have to explain that they previously had HCV infection, but it was cured. They will find out with follow-up HCV RNA testing, but it is helpful to let them know.
On occasion, I have been screened for HCV as part of a standard protocol, and my HCV RNA result came back as detectable once (although barely above the threshold). I had to insist on a repeat test because I suspected it was an error in the measurement since I had no risk factors for possible reinfection. The repeat test was undetectable. Understanding the potential for these scenarios will help people to self-advocate if they happen, and it may reduce missteps in their healthcare.
Timing is everything. Having HCV infection is 2022 is good timing as long as it is diagnosed and treatment is offered. As an HCP, you can greatly help your patients with HCV infection by talking with them and sharing as much as you can about what they can expect both during and after treatment.
What have you learned from your patients with HCV infection? What do they say about treatment and life after HCV cure? Please join the conversation and share your experiences in the comments box.
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