Disclosure

Alan Franciscus

Editor-in-Chief, Hepatitis C Virus Advocate

Hepatitis C (Hepatitis C Virus) is a highly stigmatized disease.  Revealing a diagnosis of Hepatitis C Virus can cause anxiety on a number of levels.  The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one’s life.   Common feelings that people experience when considering disclosing their Hepatitis C Virus status include:

• Fear of disclosure to family and friends as well as disclosure in the employment environment
• Fear of seeking medical treatment and having Hepatitis C Virus documented in their medical records
• Fear of denial of health and life insurance
• Fear of infecting loved ones
• Fear of dying
• Fear of being viewed as a disease rather than as an individual
• Fear of losing control over bodily functions and life
• Fear of losing employment

Most of these issues can be helped by telling family, friends or business acquaintances and seeking either professional or peer support.  However, people have to be careful who and what they tell people because of potential consequences in their personal and business life.

Family and friends 

Telling family and friends about Hepatitis C Virus status is important but can be difficult if not properly thought through.  People should be advised to wait until they feel that they have enough facts and that they are emotionally ready before divulging their status. Most likely the first people they will tell would be their spouse or significant other because of potential risk of exposure and because of the need for emotional support. Another reason to tell family and friends is the need for help, support and understanding.  However, people should be cautious and think carefully about who they tell. Try to identify the potential problems that might arise by disclosing this information.  Telling loved ones can be a traumatic experience for the person disclosing and for the person that is receiving the news.  A newly diagnosed person should consider the situation carefully because a family member or loved one may have a difficult time with the diagnosis. Furthermore, they may need emotional support that the newly diagnosed person is unable to provide.

Some questions that newly diagnosed people should ask themselves:

        Are you ready to take on the emotional issues that are the consequences of telling people you have Hepatitis C Virus?

• Do you have enough facts to answer basic questions to alleviate others’ fears?
• Do you trust the person you are confiding in?
• Will this help you or will this bring you more problems?
• Will keeping this information a secret create more problems than disclosing it will?

Having support from family and friends is extremely important so they can share their fears and feel supported.  Some preparation with facts and educational materials may help in the process.

Disclosure in a Business Environment

Disclosing Hepatitis C Virus status in a business environment should be a carefully thought out process. The Americans with Disability Act offers many protections from a legal standpoint, but there could be other less obvious acts ofdiscrimination.

The Americans with Disability Act (ADA) allows for certain protections from discrimination in the work place. ADA describes disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual.  A recent court ruling limited the reach of the Americans with Disability Act by ruling that a disability cannot be measured solely on the ability to do certain tasks at work, but must also be permanent or long lasting.  It is unclear exactly how this will impact ADA in the long run, but before disclosing a medical status to an employer an individual would be well advised to consult with the ADA or a benefits counselor.

A person that 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.  But just because someone has Hepatitis C Virus does not automatically mean that they are entitled to these benefits.  For example, if a person has asymptomatic Hepatitis C Virus disease they are not automatically entitled to protections.  However, they may be entitled to benefits and protection if they are experiencing Hepatitis C Virus treatment side effects.  In addition, one cannot be terminated from employment just because they have Hepatitis C Virus.  Furthermore, employers with 15 or more employees must provide reasonable accommodations—the key is ‘reasonable’ and the accommodations must not cause undue hardship on the employer.  These accommodations could include time off for doctors’ appointments, providing additional unpaid leave or job restructuring, and granting a flexible working schedule. 

All this is well and good, but an employer can make it difficult to pursue these benefits.  The entire issue of disclosure in the work place must take into consideration discrimination that may not be so apparent.  For instance, someone with Hepatitis C Virus could be perceived as being chronically fatigued and may be passed over for job promotions. Another potential problem is discrimination from co-workers because they fear exposure to Hepatitis C Virus. 

Questions someone should ask themselves when considering disclosing Hepatitis C Virus status at work:

• How will it affect the day-to-day working environment?
• How will it affect future promotions?
• How will it affect working relationships with coworkers?
• Is it is really necessary to disclose at this time?

On the other hand, if someone is experiencing symptomatic disease, it could be beneficial to talk with their employer about their Hepatitis C Virus status so that the employer can make certain accommodations.  This may be particularly important for someone that is considering Hepatitis C Virus therapy because there is a possibility they will experience moderate to severe side effects that may require a work schedule change, job responsibilities or other accommodations. 

Employees that feel they are being discriminated against or are not being given reasonable accommodations can start a grievance process.   For more information about ADA call 1-800-949-4232.  Some states offer broader protections than the ADA.  Contact your local disability office.

 

 

 

 

 

 

 

 

 

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