symptoms, stigma, and struggles of life with hepatitis c

The Stigma of Hepatitis C in America Hinders Patients’ Relationship With Their Doctor

Chronic Hepatitis C (HCV) infection is a serious health problem that affects 2.7 million people living in the US and requires treatment to prevent long-term health complications and irreversible damage. Although treatment for HCV is available, and the chances of the treatment leading to a cure are good, many patient needs are still not being met when it comes to their mental and emotional health.

Hepatitis C In America 2018, an annual survey conducted by Health Union, collected data from 539 people who are currently living with HCV (n=302) or who have previously lived with HCV (n=237). The results revealed the significant challenges faced when it comes to anxiety and depression, and patients’ relationship with their doctor.

People living with HCV feel they face a social stigma along with their condition, from the reactions of family and friends, the medical community, or even strangers. Thirty-four percent of all survey respondents report feeling very or extremely embarrassed about their HCV diagnosis, with 51 percent of those currently living with the condition indicating their depression and/or anxiety has gotten worse since diagnosis.

Karen Hoyt, a writer and contributor for HepatitisC.net, understands how this stigma can impact other patients like her. She writes, “We go through a range of emotions when we’re sick. This doesn’t necessarily stop after treatment … Sometimes the harsh voice that is within our own mind is the worst critic that we deal with.”

Unfortunately, this stigma of hepatitis c affects patients so significantly that it ultimately impacts their relationship with their doctor. Twenty-nine percent of the survey respondents currently living with HCV do not regularly see a healthcare professional for their condition. And of those who are seeing a healthcare professional, less than two-thirds are comfortable discussing their HCV with the doctor, and only half are satisfied with the care they receive.

A person living with HCV may feel so deeply impacted by the mental and emotional toll of this condition that they either avoid visiting their healthcare professional or keep communication to a minimum. Hepatitis C In America 2018 revealed that people currently living with HCV are seeking out others’ opinions about treatment, with 24 percent going online to read other patients’ opinions of the medication.

Relationships between a person living with HCV and their doctor is of paramount importance, particularly since treatments are available and there are good chances of a person being cured. But, many social and emotional needs exist that are not being addressed. An online health community, like HepatitisC.net, benefits people living with HCV by providing information, connection and validation that helps them along the journey. Simultaneously, it allows pharmaceutical partners a unique opportunity to reach and engage with people in the moments they need it most.

Explore more insights related to life with hepatitis C in our latest Hepatitis C In America survey findings.