Hepatitis C – To Tell or Not To Tell
Hepatitis C is a liver disease resulting from an infection with the hepatitis C virus (HCV). In about a quarter of those infected, HCV resolves without serious consequences; however, for the remainder, the disease lingers (becomes chronic). The concern is that in about 25% of these patients, chronic HCV can lead to cirrhosis of the liver, and cirrhosis can lead to liver cancer.
There is no vaccine available for the prevention of HCV, but various treatments offer a chance of cure ranging from 50-90%. The fear of contracting HCV from an infected person or the common assumption that all people who have hepatitis C are, or were, injection drug users promotes a social stigma around HCV. The fears and assumption are not fact-based.
HCV is infectious, spreading by several methods other than injection drug use. Instances where a person might encounter HCV contamination include blood transfusions, needle stick injuries, tattoos and body piercing, or by an infected mother passing it to her child at birth. It is important to know that the virus does not spread by casual contact, sharing of food or drinks, hugging, kissing, coughing, sneezing, or breastfeeding. In a monogamous relationship where one person is infected, transmission through sexual contact occurs only rarely.
At the LAIR Centre, I primarily focus on the care and treatment of patients with HCV. Many of these patients have said that they are reluctant to disclose their HCV status to family, friends, employers, and other healthcare professionals for fear of rejection, discrimination, or ostracism. While there is no legal obligation to disclose information regarding your HCV infection status, it’s very important that you, at the very least, share this detail with your physician and any of the professionals caring for you, whether dealing with disease symptoms or treatment side effects, as the infection could affect other areas of your health.
A person newly diagnosed with HCV must first come to terms with having a chronic condition and then learn how to live with the disease. Most have few or no symptoms but some report fatigue, general weakness, and vague discomfort in the area around the liver. HCV is manageable, treatable, and often curable. The majority of people who have HCV will eventually die with it but not because of it.1
The decision to divulge to others is an individual choice, and if you do decide you wish to do so, then the best way is in a context of sharing accurate information. With a clear understanding of the virus and its ways of spreading, most people will be supportive. Keep in mind that there will always be those people who will react negatively to learning of your infection, but this is usually due to lack of awareness. Providing information on HCV to the person before you disclose your infection may make the situation easier for both of you. When you are ready to share, start by telling people closest to you, whom you trust and with whom you feel safe.
When it comes to the public domain, no one needs to know if you’re infected with HCV or any other known or unknown blood-borne virus. As long as everyone assumes all blood is potentially contaminated and follows precautions in every situation in which they might be exposed to blood, whether contaminated or not, then infection by a blood-borne virus or other pathogen can be avoided. Examples of these precautions include wearing gloves, cleaning up spills with bleach and water, good hand washing, and bandaging of cuts.2
Universal Precautions (UP) refers to a specific list of practices used as “a method of infection control […] in which all human blood, certain body fluids, as well as fresh tissues and cells of human origin, are treated as if they are known to be infected with HIV, HBV, and/or other blood-borne pathogens.”3 There are slight variations of these precautions called Standard Precautions (SP) and Routine Practices (RP).4
Whether it’s a teacher in the classroom bandaging a bleeding scrape, a dentist extracting a tooth, a coach on the sports field taping up an open cut, or a doctor in the emergency room, each person should take precautions and assume that all blood could be contaminated.
If we all treat every person in the same way, then the stigma of “catching HCV” should no longer exist. If no stigma is associated with having HCV, then the decision whether or not to inform others of a positive status will not be such a difficult one to make. We all have a role to play in de-stigmatizing this disease.