"Is That Right?" Misinformation and Hepatitis C
Have you ever been told something that you later found out was wrong? I think it is safe to assume that we all have been told something that later proves to be wrong. Hep C information is no exception. Sure, the science is not static, and as our knowledge improves, some things once believed to be accurate is later proved to be inaccurate.
When the doctors are wrong
When bad or incorrect information is shared by someone we deem as an expert, such as a doctor, there can be consequences. The reason I am mentioning this at all is because of three stories I heard recently from people who were given wrong information from an expert - a person who should know better than to say what they said. Frightening people is never a good thing, and it's made worse when a person in a position of authority oversteps their understanding of the issues.
Antibody versus RNA testing
Being told we have hep C when all that has been done is an antibody test is the most frequent one that we hear in peer navigation work. It is the most common source of confusion for most people: the differences between antibody tests and RNA confirmatory test results. We know that as many as 25% of people who test positive for antibodies and have been exposed to hep C will clear the virus with their own immune response; They will still test positive for antibodies. Some people have shared that they are told they have hep C when seeing a doctor who is unfamiliar with their status as being SVR-cured, and when they test antibodies, they test positive. We know that we will always test positive for antibodies, even after SVR (being cured). People can be frightened into thinking that their hep C is back, and some have been told that based on positive antibodies. Wrong, unless they have been re-infected or never attained SVR.
This is but one example, but it is unfortunately too commonly experienced by people. We will always advocate for people to be informed themselves, but there is an expectation that medical professionals will not give wrong information to their patients. Do not get me wrong, I have great respect for doctors and their profession, but given how many times I hear these stories, I do believe there is a need for better education and understanding about hep C testing results and what they mean.
If you find yourself in this situation, where you are wondering “Is that right?”, please ask for more or a better explanation of what they are saying, and if you understand they are wrong, say something. I suggest being diplomatic and respectful, but if they have it wrong and you know they do, by all means, it may be an opportunity to inform better the care you are receiving.
Do you experience long-term side effects from hep C treatment?