If not careful, NAFLD name change may damage decades of research on the disease
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The term nonalcoholic fatty liver disease has been around for almost three decades and it is an imperfect term, because it uses two controversial words: “nonalcoholic” and “fatty”.
The words “fat” or “fatty” could be considered stigmatizing by patients. Additionally, the term “nonalcoholic” denotes absence of alcohol rather than presence of the underlying root cause of the disease: insulin resistance. These issues have caused some consternation. Although these are all legitimate concerns about the term NAFLD, there are several potential downsides of changing the name without a careful process of understanding the impact of the change.
It is important to note that despite its flaws, the term NAFLD has been associated with advances in the field and great strides in terms of better understanding the disease, its epidemiology and pathogenesis, as well as the development of noninvasive diagnostic and prognostic tests and potential new drug regimens in the pipeline.
There is a nascent and growing effort to improve disease awareness about NAFLD among primary care providers and endocrinologists who care for most individuals at risk. If the terminology change is accompanied by a change in the disease definition, the epidemiologic and outcomes data that have been generated about this disease over the past three decades no longer apply. This will put the field behind by decades and creates potential confusion about evidence that has already been generated.
Additionally, it is unlikely that changing the term NAFLD will make a huge difference in caring for these patients. On the other hand, if we are not careful, we could be damaging the growing appreciation of this disease among providers who are increasingly being asked to participate in the screening programs to identify high-risk patients in the primary care and endocrinology clinical setting.
Furthermore, the current endpoints for drug and biomarker approvals are based on the current terminology. If a name change delays the development of new drugs, it could potentially harm the field and patient care. In fact, every time you delay the development of new drugs, you could potentially harm patients with this disease. The disease awareness, screening programs and drug development must not be harmed to just have a “more accurate name” for the disease.
On the other hand, one can envision a scenario where the term is changed without changing the definition. This could be a viable option but requires building consensus among different stakeholders. In this context, a number of societies — including AASLD, EASL, the Latin American Association for the Study of the Liver and the Asian Pacific Association for the Study of the Liver — have come together to conduct a systematic and inclusive process to develop consensus about the terminology.
This process is being carried out very carefully to make sure that a change in terminology makes sense and that the impact of this change is fully understood. Once the process is completed and implemented, we will have a better understanding of the future benefits or harms of this nomenclature change on the field.
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- Zobair M. Younossi, MD, MPH, is a professor and chairman of medicine at Inova Fairfax Medical Campus.
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