Do you lay awake pondering questions about hepatitis C? If so, you probably need some answers so you can sleep better. This month, I answer some common questions I hear from patients.
I just finished hepatitis C treatment. My final hepatitis C viral (HCV) load test result was “not detected.” I was hoping that my viral load would be “negative” rather than “not detected.” My doctor was happy with the result. What does this mean?
Undetected (or nondetected) means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don’t measure down to zero. Viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and counts the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test can measure it. If you have less than 12, the test can’t measure it. In some cases, the test may not even see the virus.
Each test has its own detection range, some lower than others. The main thing is this:
“Not detected” = negative for hepatitis C
“Detected” or an actual number of how much HCV RNA you have = positive for hepatitis C
If you are concerned that you may have some residual HCV swimming around in your body, that will someday become a full-blown infection, rest assured, as this is quite unlikely. Hep C replicates a trillion times a day, so “not detected” might as well be zero. It is extremely unlikely that a small amount of HCV will remain alive in your body without having replicated to much higher amounts. In fact, viral load tends to replicate at much higher numbers when treatment fails.
My HCV load was nondetectable and my doctor says I am cured. How do I know for sure that the virus won’t come back?
Doctors have been treating hepatitis C for more than two decades. In the beginning, we only a small percentage of patients responded to treatment. We weren’t sure these patients were permanently cured, so the term sustained viral response (SVR) was used. Over time, we learned that a sustained viral response (SVR) equals a cure, and that once gone, hepatitis C does not return unless there is exposure to a new infection. The rare exception to this is when a patient has cryoglobulinemia or a rare immune condition. I’ve worked in this field for 18 years, have corssed paths with thousands of patients, and have never known anyone who had an SVR but the virus came back, except for those who were reinfected or had an error in their testing procedure.
So, are you saying that if I am cured, I can get hep C again?
Yes. The chance of a hepatitis C reinfection with hepatitis C is low, but it is not impossible. Risk of reinfection is higher if you are HIV positive or use injection drugs.
In a poster presented this year at CROI in Seattle, Andrew Hill and colleagues analzed data from 11,071 patients in 66 studies. (Five-Year Risk of Late Relapse or Reinfection with Hepatitis C after Sustained Virologic Response: Meta-analysis of 49 Studies in 8534 Patients) They found:
- HCV mono-infected persons with low risk of exposure to the virus had a 1.14% reinfection rate
- HCV mono-infected persons who injected drugs or prisoners had a 13.22% reinfection rate
- HIV/HCV co-infected persons had a 21.72% reinfection rate
- All of the patients reviewed were treated with the dual regimen of pegylated interferon and ribavirin. The best way to avoid reinfection is to reduce risky behaviors that may expose you to hepatitis C. Never share needles or syringes. Do not share injection or inhaled drugs or equipment associated with it. Avoid blood-to-blood contact with others. Use condoms if you are sexually active with a new partner or with a partner who has used injection drugs.
I haven’t seen a single study on this. There is probably no chance of reinfecting yourself with your own virus, particularly while you are taking antiviral medication. Also, the chances of hepatitis C being viable on a toothbrush, razor, or other personal instrument are extremely slim. Add to this, the low reinfection rate, and I’d say the chances of self-reinfection are slim to none.
However, I had hepatitis C once, and I know full well that sometimes we just don’t care what science says. It won’t hurt you to be overly cautious, and if you want to change this items, then go ahead. Rather than throw away perfectly good personal care items, you can store them for a few months and then use them later. You can also clean them with one part bleach to ten parts water.
I just finished HCV treatment, but my viral load was detectable at week 8 and 12. Does this mean my chances of being cured are low?
No. In the old days, back when treatment was long and used interferon, there were clear milestones that helped us know what our chances were of permanently clearing hepatitis C. Now with new direct-acting antivirals (DAAs), things have changed. Research by the NIH Clinical Center showed that low levels of HCV RNA at the end of treatment are not predictive of treatment response among patients with hepatitis C virus treated with interferon-free regimens. (Clinical Infectious Diseases, March 2, 2015) Harvoni was used in this study, but the trend is likely to apply to all treatments using HCV DAAs.
For years I thought I had genotype 1a, but a recent genotype test revealed I have 1b. How did this happen?
It may be that you have more than one genotype at the same time. When this occurs, often the genotype test shows whichever genotype which is more predominate, and sometimes the genotype can switch.
Having more than one HCV genotype is not rare, with studies placing it in the 5 to 10% range. There are various ways a person could have more than one hepatitis C genotype:
- Dual infection –This occurs when a person is infected with more than one hep C genotype at the same time. Hemophiliacs who received clotting factors, which are derived from thousands of sources, were at risk for dual infections.
- Co-infection – This happens when someone is exposed from two different sources of hep C within a short time span, and acquires hep C from a second source before the first infection is established.
- Superinfection – Someone whose hepatitis C infection is established, and then they are infected with another genotype.
If I have more than one genotype, how do I know which treatment is best for me?
If only one genotype shows up on the test, your doctor will treat you based on that genotype. If more than one genotype is apparent, then likely your doctor will recommend a regimen based on the harder to treat genotype.
Will the Mets win the series this year?
I admit, no one has ever asked me this, but they should. Lying awake worrying about hep C makes no sense, especially when there are more important issues to lose sleep over, such as whether the Mets will win the series.
Lucinda K. Porter, RN, is the author of Free from Hepatitis C and Hepatitis C One Step at a Time. This article is reprinted with permission from the September 2015 HCV Advocate