Liver disease, a leading contributor to disability-adjusted life years worldwide that disproportionately impacts people of working-age1, has emerged as a global health threat. In 2021, liver cirrhosis ranked as the 12th principal cause of death globally2. Liver health-related stigma has deterred people from seeking and receiving proper care and has contributed to their exclusion from treatment, including participation in clinical trials3, owing to personal circumstance or behavior4.

Stigma, both a consequence and a driver of health inequities, can present at various levels, from internalized beliefs and public perceptions to policy and legislation. Health and socioeconomic inequities exist across the liver disease spectrum, with a higher prevalence, more-severe illness and poorer outcomes often occurring among those who are the most resource constrained, which further fuels inequities and stigmatization. Regardless of where it manifests and subsists, stigma can have catastrophic consequences on health, from discrimination during engagement with care services to treatment avoidance. As a result, conditions or situations that are manageable may deteriorate needlessly, particularly among those who are most marginalized4.

Thus, we believe it is time for the those of us in the liver health community, including people with lived experience, to examine our language choices as mindfully as our peers in other health communities have done, and as called for in the 2021 EASL–Lancet Liver Commission4.

Stigma and discrimination

There are countless instances of people living with liver conditions continuing to experience unacceptable levels of stigma and discrimination. For example, people living with alcohol-related liver disease often face structural stigma (for instance, policies that limit their opportunities for transplantion, employment and social service eligibility), public stigma (for example, discriminatory attitudes of others, including healthcare providers (HCPs) perceiving them as less deserving of medical treatment) and self-stigma (for instance, shame about their condition). These layers of stigma, largely driven by the perception that their condition is self-inflicted, collectively contribute to negative health outcomes, including avoidance of seeking necessary medical care4.

Stigma surrounding the hepatitis C virus (HCV) is pervasive across political, economic and social systems and is often driven by assumptions that link HCV infection to socially unacceptable behaviors, such as injection drug use. This stigma is further fueled by negative attitudes toward marginalized populations, among whom HCV infection rates may be higher than in the general population4, as well as fear of contracting a potentially chronic condition. Pejorative language used in relation to HCV can influence how people are described or ‘marked’ in medical records, which leaves behind a ‘scarlet letter’ that may follow them for years. This stigma can persist even after a person is cured, spilling over into subsequent health encounters and resulting in a lifelong burden5.

Experiences of stigma among people living with hepatitis B have been increasingly documented, and these may harm entire families, with repercussions that include barriers to healthcare, education, employment and travel6. Liver condition-associated stigma can intersect with stigma related to identity, such as gender, ethnicity and socioeconomic status. This triggers a compounded stigma4 that suppresses the voices and needs of those living with disease, disregarding their complex identities as autonomous human beings and adding to the structural factors that shape their health outcomes.

As long as International Classification of Diseases coding language continues to include terms such as ‘alcoholic liver disease’7, people living with liver conditions will remain trapped in a cycle of self-fulfilling prophecies where beliefs shape actions that undermine their health interests and the support that HCPs offer them. Tackling health-related stigma requires rethinking how diagnoses, diseases, etiologies and circumstances are viewed, beginning with the language used to name and describe them.

People-centered care

Person-centered care aims to prioritize the person, not merely their health condition, so that medical support is directed to them as a whole. This approach yields numerous benefits, from improved individual health management to reduced overall morbidity and mortality8. Words matter in this context. The right words can empower people, and those close to them, while the wrong ones can demoralize them. Establishing an environment of person-centered care thus requires the use of language that instills respect and empathy, averting stigma, discrimination, fear and blame. People-first language that focuses on people, rather than medical labels9, challenges the notion that a person is defined by a diagnosis, disease, etiology or circumstance. Using the right words dignifies people and can support movement toward equality and neutrality within clinical interactions.

The people-first language movement is already viewed as a valuable approach to reducing stigma related to mental health, HIV, infectious diseases, substance use, cancer, overweight, obesity and diabetes. However, although the benefits of people-first language are theoretically apparent, the topic has not been thoroughly investigated. For instance, a systematic review of 33 studies on peoples’ preferences for weight-related terminology identified only one study that addressed people-first language10. This study, focused on people preparing for bariatric surgery, found that most participants preferred terms such as ‘person with obesity’ rather than ‘obese person’. Moreover, about half of the participants indicated that discussing weight stigma with their HCP would help them feel better about themselves and foster a sense of comfort and understanding; however, the potential impact of people-first language on health outcomes and patient-reported experiences was not investigated11.

The lack of research on the implications of people-first language on care and health outcomes creates an opportunity to explore a number of as-yet unasked and unanswered questions (Fig. 1). Nonetheless, the ongoing need to develop better evidence should neither cast doubt on nor delay the advancement of a movement that aims to empower people to seek care in an environment free of stigma.

Fig. 1: People-first language: putting people at the forefront of liver care.
figure 1

The development of this figure was inspired by those mentioned in the Acknowledgements section. Please consider this information when citing this work.

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The People-First Liver Charter

In mid-2023, the liver health community took an important step toward reducing stigma in disease terminology by renaming fatty liver disease as steatotic liver disease (SLD), non-alcoholic fatty liver disease (NAFLD) as metabolic dysfunction-associated steatotic liver disease (MASLD) and non-alcoholic steatohepatitis (NASH) as metabolic dysfunction-associated steatohepatitis (MASH)12. This nomenclature change represents a step toward person-centered care. Building on this work, experts recommended the creation of non-stigmatizing communication guidance for health professionals13 and called on international societies to advocate for a global update of International Classification of Diseases terminology by the World Health Organization, to better align with the new nomenclature14.

Moreover, in late 2023, the liver health community moved to end stigmatizing language in liver disease related to alcohol use by recommending that the term ‘alcoholic liver disease’ be replaced with ‘alcohol-related or alcohol-associated liver disease’, among other recommendations15. If leveraged effectively, the momentum generated by these initiatives could propel the people-first language movement within the liver health community, marking a pivotal moment for action.

This People-First Liver Charter (Table 1 and Supplementary Material (Spanish translation)) represents the next step in advancing the people-first language movement in the context of person-centered care for all. Inspired by existing people-first movements9 and at the request of the Global Think-tank on Steatotic Liver Disease, all co-authors here set out to build upon this body of work, tailoring it to be inclusive and representative of liver health and people living with liver conditions.

Table 1 The People-First Liver Charter
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Our call (Box 1) for people-first language use might seem self-evident and straightforward, but its implementation requires commitment, as it challenges long-held biases in how liver health and people living with liver conditions are perceived and discussed. Rather than sacrificing progress for perfection, the focus should be on making steady improvements. This begins with adopting a universal approach to tackle stigma, recognizing that people can be targeted on the basis of their identity, attributes, practices and health status4. The goal is to place people living with liver conditions at the center of their care teams, recognizing them as experts in their own lived experiences and essential partners in managing their health. Previous approaches have proven unsustainable; only by focusing on the entire individual can an environment be built that promotes improved overall health and well-being. Table 2 lists the organizations that have formally endorsed the People-First Liver Charter thus far, and we expect that more will do so.

Table 2 Organizations and journals that endorse the People-First Liver Charter
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