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Hepatitis C and Stigma

Hepatitis C is a widely stigmatised illness, people living with hep C are highly likely to experience stigma in many areas in their lives but can often experience this within healthcare settings.

Living with an illness that carries a social stigma can often lead to feelings of isolation and depression. The fact that Hepatitis C has stigma attached to it can be a barrier to people engaging in testing and treatment.

What is Stigma?

Stigma is a process where a person is negatively judged and devalued because of a particular characteristic. Judgments are interpersonal but can also involve self-judgments or media portrayals – all of which may create discriminatory behaviour.  The discriminatory behaviour a person experiences can then negatively impact on the care they receive.

Why is Hep C Stigmatised?

Hep C is stigmatised because it is a contagious illness and is associated with illicit intravenous (IV) drug use.  Fears about transmission, fuelled by misinformation about Hepatitis C, combined with moral judgments about drug use can lead to judgments that people living with Hepatitis C are “less worthy” of help.

Discrimination occurs when someone is treated differently because of a condition they have, for example, inappropriate precautions taken against an infection in health care settings, or, when people are treated differently by colleagues, friends and family due to irrational fears around infection.

My Story (experience):

My name is Tony Mullaney. I have recently come into post with the Hep C U Later team as the Training and Development Coordinator. I have extensive experience of substance use, living with the Hepatitis C virus and in later years, recovery.

My drug using history pre-dates needle and syringe programs and the re-use and sharing of equipment was commonplace.

My experiences with the stigma associated with Hep C:

My first diagnosis of a disorder effecting my liver was during a hospital admission in the late 1980s when I was informed that I had a condition called Hepatitis None-A None-B.  At the time this had little relevance to me and was just seen as another consequence of my drug use. In 1992 during another admission to hospital I was informed I had the hep C virus. I was routinely informed by a nurse who casually stated, “you know you have hep C right?”  Once I was diagnosed the hospital cleaning staff refused to clean my room as I had open wounds and nursing staff in full PPE (masks, aprons and gloves) would carry out cleaning duties.

Later in 1992 I made a visit to my family dentist, as I thought it was the right thing to do, I disclosed my Hep C status to my dentist. On completion of the work, I was informed by the dentist I would no longer be treated at his practice because he was not comfortable treating someone with the Hep C virus.

In 1997 I had my first appointment with the local liver unit after a referral from my GP, at that time I was denied treatment as I was prescribed an injectable Methadone prescription and was deemed to “not to be in the right place to engage with and complete treatment”.

On an admission for surgery in the mid-2000s I was told my surgery would be the last surgery of the day due to infection control procedures as I had had Hep C.

In 2007 I was re-referred to the liver unit, following blood work and a liver biopsy I was informed that I had a low viral load and a small amount of fibrosis I was encouraged to not start treatment immediately and “to give it a couple of years”. Being unhappy with this suggestion and with my GP advocating for me I started treatment that year with Pegylated Interferon and Ribavirin.  This was the older version of treatment and not the newer and easier versions we have available today.

Though the treatment was extremely hard to deal with and with a couple of stops and restarts I completed treatment.

Since completing treatment I have had several hospital admissions, each time I have been asked “do you know you have Hep C?” to which I have explained that I am antibody positive because of a historic infection but have completed treatment so the virus is no longer active.

At the time of completing treatment, I was working in busy role and ended up missing my 6 month PCR test to check if my virus was undetectable, Having been told by medical professionals a number of times “you have Hep C” it has always left some doubt in my mind “was my treatment successful?” Over the years I have attempted to get a PCR test from my GP on numerous occasions with no success, on a recent trip to Wessex to spend some time with Hep C clinical van I finally had a test using their Cepheid machine and received my SVR (sustained viral response), and I know have peace of mind that my treatment was successful. So, a big thank you to Sean Caddy and the Wessex Clinical van team.

My Experiences as a professional:

While working as the admissions manager in a Detox and Rehab Centre, a client who had completed treatment was referred and accepted at a local recovery housing project.  On the day of admission I received a call from a worker stating that the person could not be admitted to their facility as they had hep C and they would have to share a bathroom with other residents. This issue was resolved with a call and an explanation on the nature of hepatitis C and associated risks to the service director.

In recent years I have worked as a recovery worker in a custodial setting, and we have done a considerable amount of work in partnership with the specialist hep C nurse and the Hepatitis C Trust to encourage to get service users to engage in testing and if needed, treatment with DAAs (Direct Acting Antivirals – the newer treatments with less side effects).

A common theme amongst service users is the fear of judgment, bullying and isolation from their peers, their cellmates, and officers.

Comments from Hep C peers I have spoken to regarding Stigma

D is a service user who has a history of living with Hep C and has completed Hep C treatment in the past.

D disclosed he has experienced discrimination on several occasions due being Hep C positive As he was known to the police in his local area, as soon as his name was run the police national computer, they would find out he had a history of injecting drug use and he said “the gloves would come out” and he would be made to feel “dirty”.

D also described an incident while in a rehabilitation centre where he was given his blood results by a worker in the services minibus on the way to a meeting.  ”D you have Hep C,” This led to D feeling judged and isolated.

A is a service user and states he has encountered isolation due to the stigma of having a positive hepatitis C diagnosis. A says he has seen stigma at work in the community amongst other drug users, “as soon as people found out that another drug user had Hep C they would be ostracised” “no one would want to use with or around them”

A also describes a time when he was denied treatment from his dentist as he had disclosed he had a diagnosis of Hepatitis C. A went on to say that the highest level of stigma and judgmental attitude was amongst other users.

How Do We Reduce the Impact of Stigma?

  • Keeping Hep C at the core of what we do as treatment providers.
  • Inform people that they are not required to disclose their Hep C status except in specialised circumstances, while there is no legal requirement to disclose your status your GP and treatment provider should be informed.
  • At the point of positive test, disclosure support and advice should be given to the client about disclosure and when it is appropriate.
  • Services and workers to continue to raise awareness of the Hep C virus, how it is transmitted, how to reduce risks of infection and re-infection.
  • Making testing and treatment easy to access in a non-judgmental setting,
  • Include Hep C peers at all stages of engagement as role-models for testing, treatment, and recovery.
  • Inform the individual of Hep C support groups if they are available.
  • Raise awareness of Hep C in primary care through the delivery of training and providing Hep C resources such as information leaflets.
  • Challenge stigmatising language and look for opportunities to give people, and professionals, the correct information about hep C.

We need to reinforce the message that stigma leads to isolation and isolation can kill.

Tony Mullaney, Training and Development Lead for Hep C U Later