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Disclosing Hep C Status in the Workplace

Nicole Cutler L.Ac. May 15, 2013

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Deciding whether or not to tell your boss you have Hepatitis C is a multifaceted issue that requires education, planning and support.

Sharing your Hepatitis C status with employers or coworkers can be riddled with complexity. Whether interviewing for a new job, changing health insurance plans, being recently diagnosed or about to begin antiviral therapy, there are many factors to consider before disclosing that you have chronic Hepatitis C. There are no hard and fast rules for how to handle this topic, especially since each individual’s health and employment situation are unique. Knowing where the law lies and reviewing some of the issues involved are helpful when navigating the challenge of Hepatitis C disclosure at work.

Drug Stigma

The stigma associated with Hepatitis C infection represents the biggest barrier to disclosing having this viral illness. More specifically, the hardest stigma to confront relates to the assumption that this infection is due to injection drug use. This could – or could not – be the source of your infection, as there are countless ways Hepatitis C is spread. Regardless of how you acquired Hepatitis C, our society lacks compassion and understanding about injection drug use:

  • Those who never used injection drugs do not want to be associated with it.
  • Former injection drug users may feel haunted by their past and want to forget it.
  •  Active injection drug users carry the burden of having two stigmatized diseases – addiction and Hepatitis C.

Two Common Fears

Besides the stigma surrounding injection drug use, there are a handful of fears that others may have of working with someone infected with Hepatitis C. While most of these are unfounded, others may have merit. The two most likely fears coworkers or employers have are:

  1. Fear of Contagion – There is a great deal of misinformation about how you contract the Hepatitis C virus. For example, those who work in the food service industry may incorrectly believe that Hepatitis C can be passed through food, or those sharing an office cubicle may incorrectly believe that Hepatitis C can be shared by casual contact. For the record, Hepatitis C is only transmissible via blood-to-blood contact.
  2. Fear of Reduced Performance – Depending on the person’s health and if they are in treatment, this fear may or may not be justified. Fatigue, memory problems, nausea and cloudy thinking are common in those with advanced infection and/or those receiving Hepatitis C therapy. However, many people with Hepatitis C are asymptomatic and their job performance is not impacted by their illness.

Disclosure

When questioned about disclosure in the workplace, most people report only doing so when necessary. In general, you are not legally required to tell anyone that you have Hepatitis C. You have the right to choose whom you tell – if anyone at all. However, there are certain circumstances in which it pays to be honest. For example:

  • If you are aware of having Hepatitis C and want life or medical insurance, you must disclose this when asked.
  •  If you are preparing to undergo Hepatitis C therapy, disclosure might be helpful if you need to request extra time for doctor visits and/or being sick.
  • Being directly asked about Hepatitis C status in an interview is rare, but possible. Although this may not seem fair, some employers ask questions like this during the interview process. It is legal for them to ask as long as they ask this of every potential employee. It pays to be honest here, because lying can legitimize firing.

While honesty usually ends up working to people’s advantage, discrimination might accompany a Hepatitis C disclosure. If you do decide to disclose this illness at work, make sure you are prepared. Know your facts so you can properly educate employers and/or coworkers. While a pamphlet on Hepatitis C can come in handy, be prepared to answer questions about prevalence, how the illness is transmitted, treatment and side effects, symptoms and prognosis. Above all else, make sure you have a support system in place so that you have access to resources if needed.

The ADA

The Americans with Disabilities Act (ADA) may offer someone with Hepatitis C some degree of legal protection against discrimination in the workplace. Some states offer greater protection than the ADA.

  • Employers in the United States with 15 or more employees are required to comply with the ADA.
  • The ADA protects “qualified individuals with disabilities.”
  • The ADA describes disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual.
  •  A disability cannot be measured solely on the ability to do certain tasks at work, but must also be permanent or long lasting.
  • A person with a disability designation is entitled to protection from any practices in the workplace that could affect wages, benefits, application procedures, job assignments, promotions, etc.
  • Having Hepatitis C does not automatically entitle someone to these benefits.
  • You cannot be terminated from employment solely because of Hepatitis C status.
  • The ADA does not provide protections for those who cannot work due to a disability.
  • ADA assists people who can work, but may need some extra consideration in performing their duties so that they may continue to work. Some reasonable accommodations that might be appropriate are time off for doctors’ appointments, providing additional unpaid leave or job restructuring, and granting a flexible work schedule.
  • There is nothing in the ADA law that prohibits an employer from terminating your employment if you do not perform your job, even if it is a disability that prevents you from doing so.
  • Other laws, such as the Family and Medical Leave Act (FMLA) and COBRA/OBRA provide help for those who are permanently disabled.

Before disclosing you have Hepatitis C at work, carefully consider all of your options and the potential implications. Be aware of the stigma associated with Hepatitis C and people’s most common fears so that you can fully educate your employer or coworkers. Decide if it is in your best interest to disclose this personal, medical manner by being aware of what legal rights you may or may not be entitled to. With the right preparation, knowledge and support, those with Hepatitis C can make the best possible decision about disclosing their illness at work.

References:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/ADA_FS_10.pdf, Americans with Disabilities Act: What it does and doesn’t do, Jacques Chambers, CLU, Retrieved March 19, 2013, Hepatitis C Support Project, 2013.

http://hcvadvocate.org/hepatitis/factsheets_pdf/Disclosure%20Guide.pdf, HCV and Work-Related Issues, Lucinda K. Porter, RN, Alan Franciscus, Retrieved March 19, 2013, Hepatitis C Support Project, 2013.

http://www.hepcfocus.com/content/Library_ADA.aspx, Americans with Disabilities Act, Retrieved March 19, 2013, The Department of Health and Human Services, 2013.

http://www.thelaw.com/guide/employment/can-you-be-fired-from-work-for-having-hepatitis-c/, Can You Be Fired from Work for Having Hepatitis C?, Michael M. Wechsler, Esq, Retrieved March 19, 2013, The Law Network, LLC, 2013.

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  • ahepper

    I told them early on and I could tell that it was always on their minds. I wouldn’t disclose it if I could do it over.

    • I had the same experience. And I worked with other nurses. Thought they would understand but they did not.

      • They must not know that being a nurse, EMS worker, police officers, etc. before 1992 when “universal precautions” came about, have a higher rate of Hepatitis C. Also, being a baby boomer, if that’s the case has now been found to be a very high risk for Hepatitis C, CDC recommends them ALL to be tested.

  • LeLee

    i didn’t tell anyone until it was time to do the meds. at that point i told bosses only. but i found people that knew me, really knew ME, weren’t ugly at all. the past is the past. look at who i am today!

    • *David*

      I have been totally open about my Hep C, to everyone. I write a column for our local newspaper and have told my story, several times. I have no problems and no one has ever stayed away from me, at least nothing that was apparent. I had a liver transplant almost 4 years ago and having done the 2 part cocktail; interferon/ribavirin, am now undetectable for the past 16 months.

      • I am also open about my disease. I feel that if we all tell people about Hepatitis C, and don’t say how you think you got it if you don’t want to, but if we all are not ashamed of anything about Hepatitis C, maybe the public will learn from us and stop this stupid stigma. After all, we’re sick, we have a disease and we deserve some help, some compassion, more research, more funding, etc. Somehow HIV-AIDS got out of that stigma and has much funding and publicity. I stand up, not exactly proud to have Hepatitis C, but definitely not ashamed.

  • bobbie

    I wonder if they can find out we have it from the insurance company. ..can they see what were getting treated for from the claims we make on our insurance?

    • Connie Poster

      Unfortunatly you employer knows about any health problems that you may have even if you do not personally tell them, that is if you get your insurance through your employer. The reason being that any company or individual that pays or helps pay for your medical insurance is entiteled to see your medical records.

      • sioux

        I worked in a prison, and I saw how my fellow officers treated the inmates that had Hep C, so I had no inclination to tell anyone. Since the CDC has said Hep C is at epidemic levels something should be done about the stigma associated with this disease because many are dying before they get a chance. Slowly I am beginning to share my story but very story because I no longer work at the prison .However I was fired and I wonder what the real circumstances were.

        • Gerry

          I disclosed my hep c status and although work have let me take time off for hospital appointments they know far too much about me. I also think it damages your credibility as a person and I am positive they think differently about you. I have taken some time off work whilst I am going through the treatment because I kept going off sick with feeling unwell the work was piling up. You would be surprised about who I work for and how they have reacted even making me tell the guy who does health and safety which I think is illegal. I work in an office. My boss also told her neighbours and husband!

  • NA

    Don’t disclose anything. The condition is not spread through coughing or sneezing or touching etc. Like many health conditions, there are many people who don’t even know they have a problem, so there are no guarantee’s of protection in this world.

  • buzorro

    I recently had to have my FMLA forms updated. The problem is that they are filled out by a nurse and signed by my gastro-doc (there’s no hepatologist where I live). Due to lethargy and almost constant diarrhea from the Lactulose I’ve been taking, I’ve been taking a lot more time off than what the old FMLA form predicted. I took the new form to the nurse that fills them out and told her of my predicament. I hope she amended the ‘predicted time off’ part.

  • Toni

    I was demoted from my job as head cook while working at the Chickasaw Nation. They said that it wasn’t a demotion because I was getting the same pay but instead of being head cook I was a housekeeper the lowest on the totem pole. In stead of going 2 blocks to work I had to travel 24 miles away to do the job. I believe that this was an effort to make me quit.

  • Cheri

    I told my boss as soon as I found out too. Even though I probably had it for 20 years. Every evaluation after that and there were more than others, things like “your health must be bothering you.” I was reprimanded once on a totally bogus situation and my boss indicated that I was probably not feeling well.

    Don’t disclose!!!!! As far as doc appts and such, they don’t know if you have cancer, the C, or just bad teeth. Give them a doc slip if needed to show you were there, but keep it to yourself in the workplace.

  • RJS

    I disclosed my Hep C to my employer when I started Interferon/ Ribaviron treatment in 2002.My boss turned into a monster… Refused to accept I needed some accommodations when I was sick during my unsuccessful treatment. My job was threatened almost daily and the boss told my several times “this is your problem, not mine, I did not make you sick. Finally I had to seek a legal remedy and hire a Lawyer to educate him about the “ADA”. He backed off after realizing he could end up being sued. After the Lawyer contact, I could tell he hated me…tried to retaliate against me. Had to have Lawyer send him a reminder letter about retaliation being illegal months later. Obviously, my future with the company was going to be rocky. I knew I could not win in long run that they would hold my career back anyway possible, even though I had been # 1 sales producer for many previous years..Plus the fact I hated the boss and had zero respect for him after he tortured me when I was weak & sick. Six months after my unsuccessful treatment was over I resigned my position and moved on. After this my heart was not in it…. I could not willingly serve this company.

  • Arlene

    As a HR professional I would not recommend disclosing any medical conditions to your employer unless you need time off under FMLA. They will consider you a liability because the treatment costs for Hep C will drive up the insurance premiums. As a result some employers will find a way to terminate your employment.

    • Rowan09

      I would like to know if a state agency (fire department) can deny me employment solely on having Heb B? They said in the letter my condition would “flare up” due to conditions in the fire house. I have never seen anyone’s hep b “flare up” and I am from another country and no one knows how I contracted the virus (don’t do drugs or drink either). I was DQ’d because I have hep B and still working on trying to get it resolved. They had me complete everything even though they knew my condition initially and then decided after I was complete and waiting on the academy to dq me solely on hep b antigen being positive.

  • zerllsgirl65

    Such a catch 22; I’m a surgical nurse who contracted Hep. C via a stick from a positive patient. I am also a recovering addict, so I can understand the double edged sword here. Sadly, even other healthcare workers do not reflect an educated understanding of the disease and act accordingly. What a shame to have such ignorance and unsympathetic people in this world!

  • missstew

    I recently joined a trial in which I had FMLA papers completed as I am going weekly to the doctor. My Heptalogist only disclosed that I have a chronic illness. I have not had a problem, thus far, with my employer.

  • Joho143

    I’m not sure how I contracted HCV but when I found out I had it I was working in a hospital on a floor where I had lots of contact with patients who had it. I could not believe the reactions I got from coworkers when I told them I had HCV. I’m a social worker and I mistakenly thought my fellow social workers would be supportive, instead they ignored me and offered no support when I had to take time off during treatment because I was so sick. Also when I tried to file for workers comp the nurse at the occupational health clinic kept saying “it’s sexually transmitted” when I told her I never used IV drugs, had a tranfusion etc. I left her office in tears because she was so awful towards me. While I do think its important that we put a “normal” face on HCV I had an awful experience when I disclosed. Now that I’m SRV I might have an easier time telling people I “had” HCV, but the stigma is still there and going strong unfortunately.

  • unknown

    I repect everyone whom were brave enough to disclose..cheers to u..but I have worked with those with hep c..and true ppl will say rude stuff..but if I know there is a blood risk caution is warned but u have to know that some whom have this are careless.I know some .and thats a risk if using knives around food.if I got sick from work..and was never told? I am sorry..but id sue the pants off the company and the person..cause this not only afgects workers but thier whole family.old and young

  • Kayla

    I just found out I have hep c, I’m only 17 years old but have been working as a trainee dental nurse for 7 months. The dentist left a blade unattended and I didn’t see it and pricked myself with it unfortunately the lady he used the blade on had hep c. No one at my work knows because my boss is very strict on those kind of things and I am aware that she would fire me if she found out. I love my job and I’m very confused on what to do. I don’t want to lose my job but at the same time I know not saying anything is wrong. I’ve done a lot of research on what could happen and how to help slow down anything that might happen but being very young it has really shown me my own mortality. If anyone has advise I would really appreciate it