We recently offered a flash survey to our members asking for their views on whether the term "fatty" included in the name of nonalcoholic fatty liver disease (NAFLD) was stigmatizing. Here is a link to the results.
Below, find visuals of how members responded to some survey questions. View full results with the link above to see responses to open ended questions:
NOTE: Most patients did not report that the use of fatty was stigmatizing to them, however, the number who did is significant and we need to be sensitive to that. Whether changing the name or educating the shamers is the best approach is part of the debate.
We have received a number of comments and observations from within and without the foundation and I've included many of them below if you wish to consider the broader debate.
One message that came up regularly was why spend all that money on a name change when the patient needs are so great?
Liver diseases are considered as stigmatized diseases, yet currently available information is mainly limited to certain etiologies, such as alcohol-related liver diseases and hepatitis B or C infection, likely because these etiologies are associated with alcohol and illicit drug use.
To FLF's knowledge, only one study has been reported assessing the prevalence, characteristics, and consequences of stigma in patients with NAFLD. A link to that report is below
This prospective, controlled study included a wide spectrum of patients with NAFLD, from simple fatty liver without fibrosis, to significant liver fibrosis but without cirrhosis, to compensated cirrhosis and, finally, decompensated cirrhosis.
Results of this study showed that about two thirds of the population studied had perceived stigmatization, distributed among the 4 different domains - stereotypes, discrimination, shame, and social isolation.
Interestingly, there was NO association between the prevalence of perceived stigma and age, sex, educational background, demographic data, co-morbid conditions, including obesity, presence or absence of cirrhosis.
· The Fatty Liver Foundation is of the view that changing the name of Non-Alcoholic Fatty Liver Disease, should NOT detract from efforts to tackle stigma and discrimination against fat, fat people, and fatty liver disease.
· Fat, obesity, diabetes, hypertension, and metabolic disease are multi-factorial in their etiology, and the environment and social circumstances from which they arise, are more often out of the control of the individuals affected by these diseases.
· The survey of our patient community regarding their perceptions of the terms, and the change in nomenclature, correlate to a high degree with the divergent perspectives in the medical provider community.
· Through our engagement with the patient community over the years, we have gleaned insights that may point to the differing views within the patient community:
o Those who react emotionally to the terms may have social and environmental circumstances that promote self-stigma, and insecurity.
o Those who stop to think about the terms, have more secure and stable circumstances, to allow for rationalization of their disease, and how they interact in society.
· A change in nomenclature will be a short-lived blip (if at all) in de-stigmatizing Fat and Fatty Liver Disease, and lasting change can only come from ongoing efforts to tackle stigma and the social determinants that result in the chronic co-morbidities and fatty liver disease.
· With full appreciation and acknowledgement of the scientific and medical community and their efforts to develop new therapeutics and provide clinical care and support, we have also observed experts advocating for nomenclature linked to their particular areas of specialization and study.
· Ultimately, these debates and discussions boil down to a simple question for us in the patient community: What difference does it make to our lives and care as patients?
· Our data and survey suggests that patients CAN live with the association of fat and fatty liver disease, and as a patient advocacy organization, we will re-double our efforts to fight stigma and discrimination.
· We as patients however, are beholden to policies, practices, and practitioners, and will probably have to go with whatever name they decide on.