Living With Hepatitis C
HealthCentral’s Yumhee Park recently interviewed Paul Bolter of the American Liver Foundation on issues surrounding hepatitis C, such as dealing with stigma, how young people are affected by the virus, and ways to be proactive when living with hepatitis C.
Paul Bolter is the Education and Outreach Manager for the Greater New York Division of the American Liver Foundation.
Paul Bolter is a Certified Alcohol and Drug Counselor originally from Boston with 20 years of experience in the HIV/Hepatitis C and Viral Hepatitis field. Paul has been published in several publications addressing Harm Reduction and Viral Hepatitis and most recently with International Business Weekly regarding the cost of the new drugs available for hepatitis C and barriers to care. Paul is dedicated to educating everyone on the facts of Viral Hepatitis, disease prevention and access to care.
For more information HepC resources and how you can manage your hepatitis C, go to www.HEPC123.org.
What would you say are common mental effects people experience when living with hepatitis C?
People with hepatitis C often experience depression, feelings of isolation and issues related to stigma. Depression can be a common, constant discomfort which may be expressed by negative thinking or ‘feeling like you can’t go on’. Feelings of isolation may arise because individuals have not shared their diagnosis and any side effects they are experiencing with friends and family. Overcoming stigma can also be a challenge.
What should people who have been newly diagnosed with hepatitis C seek from their health care provider?
It is important that patients have the ability to communicate openly and comfortably with their health care provider(s). Patients may have a lot of questions, such as “What are the next steps?”; “What is my genotype?”; “What testing should be done to determine the extent of my liver damage?” Medication costs and insurance questions are also critical to treatment and should be openly discussed. Patients should inquire about support groups and other resources. It is important for patients to not be ashamed of a hepatitis C diagnosis.
What are some ways people can be proactive about their health when living with hepatitis C?
It is important for individuals living with hepatitis C to be proactive about both their physical and mental health. Ways to improve a healthy lifestyle include quitting cigarette smoking, addressing substance abuse issues, limiting or stopping alcohol intake, practicing safer sex and eating healthy. Ways to be proactive about mental health include joining a support group, seeking counseling to address stigma and getting guidance on how to disclose their diagnosis.
How are young people being affected by hepatitis C?
Studies in New York show that the risk of infection is increasing rapidly for young people between the ages of 18 and 24 due to risky behaviors such as receiving tattoos and body piercings from unlicensed and unsanitary providers, as well as sharing needles by intravenous drug users. The LGBT youth community is increasingly at risk due to these risk factors as well as sharing prefilled hormone injections. There is some risk of contracting hepatitis C sexually so teens need to be educated about the risk of unprotected sex.
From a public health perspective, what are some ways to prevent the spread of hepatitis C?
It is important for high risk populations to be educated about the hepatitis C risk factors and for individuals to be tested for hepatitis C. High risk populations include baby boomers, individuals with a history of IV drug use, and individuals who are HIV positive. As treatments have become more effective, it becomes more critical that individuals who have hepatitis C--but don’t know it-- are educated and diagnosed. Education and outreach about hepatitis C should be a collaborative effort in the community.
Can you talk about the stigma that affects the hepatitis C community?
When stigma is associated with a medical condition, like hepatitis C, it can prevent individuals from getting diagnosed, seeking treatment, disclosing their diagnosis to the people most likely to provide support and in following treatment guidelines. If you have hepatitis C, how you got it isn’t as important as how you beat it. It is important to not let stigma interfere with your decision making or have an impact on your life. Remember that you may not be stigmatized after all. Positive thinking all the way!
What is the stigma like when compared to stigma that is associated with the HIV community?
The stigma associated with hepatitis C is very similar to that associated with the HIV community. Both are based on a lack of information and/or education of the public. There have been many HIV/AIDS awareness campaigns to reduce stigma in this HIV community. Unfortunately, hepatitis C is less understood in the mainstream as a result and therefore many people have a negative reaction or view of the disease and those living with it.
What role do support groups play in relieving the hepatitis C community of burdens and ultimately helping them reach a cure?
Support groups can create safe, informative spaces for hepatitis C patients and contribute to a support system for the patient that is important for successful treatment, self-care and acceptance. Support groups can provide education and updates about both available treatments and those in the pipeline. These education efforts can have a positive effect by showing individuals who have not responded to treatment in the past that there is hope. Support groups can play a role in the treatment adherence and compliance as patients who might have the urge to ‘give up’ before their treatment is completed may not do so if they are a member of a group. Most support groups are facilitated by experienced nurses, social workers and/or ‘peers’, patients who act as peers to others with hepatitis C. The facilitators are able to understand the daily effects of liver disease and offer insight as to how to address common side effects of medications, as well as information regarding nutrition, exercise and other important self-care practices. Overcoming stigma related to hepatitis C is often a subject of many support group sessions.