By Ashlie White, Chief Strategy and Programs Officer & Natalie Harold, Resource Development Manager

The Amputee Coalition has long been a trusted and commonly cited source for information and statistics on limb loss and limb difference. However, the data used to generate much of this information is outdated. Now, just in time for Limb Loss and Limb Difference Awareness Month, we have new data to share with you about our diverse and growing community.

In collaboration with Avalere, part of Avalere Health, a U.S. based healthcare consulting firm, we have commissioned a study to determine how many people are living with limb loss and limb difference in America today. Our findings are published in a whitepaper titled, “Prevalence of Limb Loss and Limb Difference in the United States: Implications for Public Policy.” The full report can be accessed via our webpage by visiting www.amputee-coalition.org. The following commentary will provide you with our main takeaways:

We estimate that there are over 5.6 million people currently living with limb loss and limb difference in the United States. Of these, nearly 2.3 million have limb loss and another 3.4 million have a limb difference.

5.6 million might seem like more than double the previous estimate, but it is not. Historically, individuals with limb difference have been all but ignored in previous research. Limb loss and limb difference have many similarities, but they are distinct from one another. Limb difference is a congenital condition in which “a limb is anatomically different in size, shape, or structure.” By definition, a person born with a limb difference is not considered to be a person with limb loss or “an amputee” because they have not undergone an amputation surgery. So no, the limb loss population in the United States has not doubled overnight. Rather, for the first time we have chosen to include individuals with limb differences in our attempt to count every one of our community members. As it turns out, individuals with limb differences outnumber those with limb loss by a considerable margin.

This 2.3 million estimate is spot on with the last growth prediction of the limb loss population. The last known attempt to determine the size of the limb loss population in the U.S. was in a 2008 study titled, “Estimating the Prevalence of Limb Loss in the United States: 2005 to 2050.” According to this study, authors had estimated there to be 1.6 million people with limb loss in 2005. They also predicted that this population would double in size, growing to over 3.6 million people by the year 2050, unless the rate of amputation due to dysvascular disease could be reduced. We are nearing the halfway point of that prediction, and it looks as if we are right on track to reach 3.6 million people with limb loss by—if not sooner than—the year 2050. That is, if we cannot reduce the number of preventable amputations by developing effective strategies for prevention, early intervention, and comprehensive care for those at risk for amputation.

Data on comorbidities revealed an alarming, albeit not surprising result. More than half of the individuals with limb loss in this study had a history of diabetes (57.6%) prior to their amputation. The other most common diagnoses were infection (42.8%), vascular conditions (39.3%), and ulcer (37.7%). Although we cannot conclude definitively that the causes of these amputations were due to these health conditions, we also cannot ignore the widely understood and accepted pathogenesis of diabetes as a leading cause of amputation.

This is still only an estimate—likely a gross underestimate—of the actual size of our community. The datasets used to calculate this estimate include all Medicare claims and the bulk of all managed Medicaid, commercial, and Medicare Advantage claims, between 2016-2021. Despite not accounting for any uninsured individuals or military members covered by the Veterans Affairs (VA) or TRICARE, this study is the most current and most accurate estimate that we have for this population.

The need for this study was long overdue. “With this new information and evidence of increased prevalence, we know there is a tremendous need for increased support and education for members of our community and those at risk of amputation,” says Ashlie White, the Chief Strategy and Programs Officer at the Amputee Coalition.