Hepatitis and Disclosure

A diagnosis of viral hepatitis can generate concern or even fear. The concerns and fears may be based on perceived or real consequences of a hepatitis diagnosis. A greater understanding of viral hepatitis can alleviate some fears. The information provided here was informed by the HCV Advocate, Americans with Disabilities Act documents, and participants of HepTREC’s support groups.

Before discussing a diagnosis of hepatitis, it is important to think about the potential impact of disclosure in personal and professional situations.

Common feelings include:

• Fear of being treated differently
• Fear of illness or dependency
• Fear of infecting friends and family members
• Fear of dying
• Fear of having hepatitis infection documented in medical or employment records
• Fear of denial for health or life insurance policies
• Fear of losing employment
• Fear of violence or emotional distress when telling a family member or intimate friend that they may have been put at risk.

Personal disclosure
Talking to family and friends about a hepatitis infection is important. Most people feel relieved and supported once they disclose their diagnosis to loved ones. However, the disclosure can be difficult for all involved. Some people associate hepatitis with drug use, sexual promiscuity and homosexuality. Unfortunately, these behaviors and situations are often stigmatized in the community. It is helpful to be ‘ready’ for the disclosure. Be ready emotionally-family and friends may need support to accept the diagnosis. Be ready with information- family and friends will be concerned and have questions. Not everyone needs to know about the infection. Before discussing a diagnosis of viral hepatitis with others, consider:

• Why is it important to tell this person?
• Am I ready and able to answer their questions about hepatitis?
• Do I trust this person?
• Have I disclosed other personal things to this person?
• How did they react?
• Am I prepared for the person’s reaction?
• Am I afraid this person may hurt me?

Legal disclosure
Many life and health insurance companies ask applicants if they have been tested for viral hepatitis. Other legal agreements may also require disclosure of hepatitis status. While it is tempting to withhold this information, it may be illegal to do so. Some doctors are willing to write a statement about a patient’s health and life expectancy.

Professional disclosure
Disclosing hepatitis infection to co-workers and employers may bring relief and support, but it can also lead to subtle discrimination. Disclosure of hepatitis in a business environment should be a carefully thought out. The ADA (Americans with Disabilities Act) provides for certain protections from discrimination in the workplace. The ADA describes disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual. Before disclosing a medical condition to an employer, an individual would be well-advised to consult with the ADA or a benefits counselor. A person who is designated as disabled is entitled to protections from any practices in the workplace that could affect wages, benefits, application procedures, job assignments, promotions, etc.. However, having hepatitis or liver disease does not automatically entitle one to these benefits. For example, if a person has asymptomatic disease, they are not automatically entitled to protections. However, they may be entitled to benefits and protection if they are experiencing symptoms.