Welcome to the monthly journal of LISN! It’s been a positive time; we hosted a Joint Educational Event with the Irish Liver Foundation. We met in Dublin and up to 80 attendees joined us – liver patients, their families, friends, nurses, psychologists, volunteers, liver consultants and more. We listened to very interesting speakers guide us through the silent epidemic that is chronic liver disease, received some insights into inflammatory liver diseases such as autoimmune hepatitis (AIH), primary sclerosing cholangitis (PSC) and primary biliary cirrhosis (PBC). We also heard details of the upcoming counselling pilot programme by LISN and the plans for a free liver screening mobile unit for nationwide use. In addition, we welcomed the launch of Living with Liver Disease and as a Transplant Recipient: Managing Your Mental Health; a booklet which aims to educate and inform new liver patients about emotional and psychological responses to liver disease and transplant, typical stages of the journey and some strategies to reduce stress. It was produced and co-authored by two two-time liver transplant recipients, so it’s based on sound experience and solid research!

But today I want to chat about something a little negative. I was recently stopped at a Garda checkpoint. Happily, my tax, insurance and NCT are in date, so I casually opened the window to chat with the young friendly-looking guard who, it transpired, was undertaking spot checks for drivers under the influence of alcohol and drugs. I smiled and told him that, as a transplant recipient, I haven’t drunk in years. He gave me that now-familiar look of surprise, empathy and admiration, said something complimentary before asking ‘kidney transplant, was it?’. I responded ‘no, liver’ to which his demeanour changed. He looked uncomfortable and the admiration was replaced by another expression – less friendly and perhaps a little cold. As he waved me on, I was left feeling quite unsettled – and stigmatized!

This was not the first time I have received this reaction. For me, this disapproval and almost disdain has occurred so many times that I find myself explaining that my transplant was not as a consequence of alcohol, as many are, but due to an underlying blood disorder.

BUT why should I do that? I, and we – I know others have also experienced this – should not have to justify the underlying cause of our liver failure. But we feel we must because we know there will be a negative response. We actually anticipate discrimination as liver transplant recipients! How have we allowed this to happen? Heart, lung, kidney and other transplant recipients receive the (in my opinion) respect and admiration of others that is well-deserved. After living with chronic illness, organ deterioration and scarring, the battle to be placed on a transplant waiting list while all the time being so aware of mortality before the lifesaving but extremely complex surgery happens, why should any transplant recipient be treated differently because of the particular organ that needed replacing? Is it because some celebrity liver transplant recipients were recognised alcoholics and the public heard only stories of liver transplants as a consequence of alcohol? Is it because the public haven’t been educated on the myriad liver diseases and illnesses which can cause fibrosis and eventual cirrhosis? Is it because of our history and we are still identifying ourselves as the ‘drunken Irish’?

This unacceptable bias towards liver transplant recipients is misplaced, untrue and discriminatory. And, for those recipients who have undergone liver transplants due to alcoholism or end-stage alcoholic liver disease, there is still room for a vast improvement in public opinion and attitude. Alcohol-related liver disease – the hint is in the name – is a disease. It’s not a choice but a complex disorder in which a person has an impaired ability to control the amount and frequency of their alcohol consumption, despite its serious physical and emotional health implications.

Fatty liver disease also receives similar intolerance and discriminatory attitudes. Like alcohol-related liver disease, a person is frequently blamed for damaging their own liver, in this instance by ‘overeating’. Again, this is not always a controllable disease and is certainly not a choice.

I did some research on the topic of liver disease and stigma and my instincts were correct. My experiences are not uncommon for many of us! In one study undertaken in Denmark, (Østberg et al, 2023), a total of 340 people with liver disease were surveyed to assess the perception of stigmatization by responding to eight validated questions on patients’ perception of negative prejudices and if the prejudices and negative attitudes affected their self-perceptions.

Overall, 25% of patients with alcohol-related cirrhosis had perceived negative prejudgements from relatives, and the same fraction reported that prejudices and negative attitudes affected their self-perception. Among all patients, regardless of cause of illness and severity, 32% of them avoided telling others about their liver disease and 44% of the patients with non-alcoholic cirrhosis perceived that other people had the misperception that their liver disease was caused by alcohol.

Those living with alcohol-related liver disease (ALD) experienced more discrimination and severe stigmatization compared to other mental and medical disorders. In addition, population studies have shown that most responders blame those with alcohol-related liver disease for causing their own disease in contrast to other mental disorders such as depression or schizophrenia.

This begs the question – how do people with alcohol-related liver disease (ALD) facing such stigma and prejudices describe their quality of life (QOL) and mental health? The simple answer is they are at greater risk of mental health disorders, as not alone are these patients cognitively and functionally impaired by the liver disease, resulting in fatigue, long-term stress, sleep disturbances, and social isolation, but stigmatization further increases the risk of mental health problems, reducing quality of life even further.

Stigmatization is also common among patients with non-alcoholic fatty liver disease and is also associated with impaired quality of life. It may be responsible for discrimination, shame, social isolation, and stereotypes, which may affect the human and social rights of affected patients.

On a related note, then, three national liver disease associations have recently renamed a number of liver diseases to make them more “affirmative” and less stigmatising to patients. Announced at the European Association for the Study of the Liver (EASL) congress in Vienna in July last year (BMJ, 2023) –

· non-alcoholic fatty liver disease (NAFLD) will now be called metabolic dysfunction associated steatotic liver disease (MASLD), and

· A new category, MetALD, describes those with MASLD who consume greater amounts of alcohol a week (140 g a week for women and 210g a week for men).

This positive step was vehemently endorsed by 74% of respondents who felt that the current nomenclature was sufficiently flawed to consider a name change. Further, the terms “non-alcoholic” and “fatty” were felt to be stigmatising by 61% and 66% of respondents, respectively. A total of 236 panellists (hepatologists, gastroenterologists, paediatricians, endocrinologists, hepatopathologists and public health and obesity experts) from 56 countries participated in the survey which examined the stigma associated with the terms used to categorise liver diseases.

Different types of stigmatizations exist, such as public stigmatization, which involves negative or discriminatory attitudes toward others; self-stigmatization, which refers to the negative attitudes and shame that patients have about their own condition; and structural stigmatization, which involves policies of governments that intentionally or unintentionally limit opportunities for patient with liver disease. The experience of stigmatization does impact patients negatively, particularly their mental and psychological wellbeing, in addition to an impaired QOL. Further, the association between stigmatization and delayed disease recognition, timely help-seeking, and negative health outcomes may increase the overall burden of liver disease and further exacerbate existing complications. While increased knowledge is needed to lead action against the stigmatization of patients with liver disease, maybe it’s time to call this out as discrimination? It’s neither fair, kind, accurate nor informative. It is damaging, harmful, cruel, ignorant and dangerous.

Please have a chat about this with the people in your lives – don’t let this stereotyping and stigmatising of liver patients happen in your company! There’s too much to lose!

BMJ 2023; 382:p1587 http://dx.doi.org/10.1136/bmj.p1587

Østberg, N., Jacobsen, B.G., Lauridsen, M.M. and Ladegaard Grønkjær, L., 2023. Mental health, quality of life, and stigmatization in Danish patients with liver disease. International Journal of Environmental Research and Public Health, 20(8), p.5497.

Younossi, Z.M., AlQahtani, S.A., Funuyet-Salas, J., Romero-Gómez, M., Yilmaz, Y., Keklikkiran, C., Alswat, K., Yu, M.L., Liu, C.J., Fan, J.G. and Zheng, M.H., 2024. The Impact of Stigma on Quality of Life and Liver Disease Burden Among Patients with Non-alcoholic Fatty Liver Disease. JHEP Reports, p.101066.