5 Million Strong

By Natalie Harold, Resource Development Manager

How many of us are out there?

Are you a person living with limb loss or limb difference? Have you ever wondered how many others like you are living in the United States at this very moment? By typing that query into any search engine, you will immediately be presented with a figure somewhere just above 2 million people. Because counting every person who has ever had an amputation is not truly practical, you may be left wondering where these estimates come from.

Until now, the most recent and commonly cited research was published in 2008 by Ziegler-Graham et al. This study, titled “Estimating the prevalence of limb loss in the United States: 2005 to 2050,” used incidence rates derived from the 1988 to 1999 Nationwide Inpatient Sample of the Healthcare Cost and Utilization Project. Simply put, hospital discharge records were reviewed for people who were discharged with a procedure code or diagnosis code for amputation. According to this study, in the year 2005 there were an estimated 1.6 million people living with limb loss in the U.S. More importantly, it was projected that without proper interventions that number would more than double by the year 2050 to 3.6 million people.

New prevalence study coming soon

Taking a similar approach, the Amputee Coalition in partnership with Avalere Health recently concluded a new study to estimate the prevalence of limb loss and limb difference in the United States. The Amputee Coalition anticipates this study will soon be available free of charge to the public, and we will announce its release on our communications channels. Although we are still waiting for the final numbers to be churned out, we can tell you with quite a bit of certainty that we expect the number to land north of 5 million people.

Of that total, we anticipate that 2 million-plus people are living with limb loss and another 3 million-plus are living with limb difference, a subgroup that has all but been ignored in previous research. The plus-plus part of that estimation indicates that we know our estimate doesn’t include everyone. Most notably, we recognize that by using insurance claims data we can include only people covered under specific types of insurance. Our analysis cannot account for individuals who are uninsured, which in 2021 was nearly 8.6% of all Americans, or an estimated 26 million people.

Similarly, we did not include data from any retired or active-duty military personnel, or their families covered by other health insurance such as Veterans Affairs or Tricare. Future research is needed to fill these gaps and contribute to a more robust data sample.

When it comes to estimating prevalence data, there are a few approaches that can be taken, each yielding a slightly different result. For this study, we took a retrospective approach to analyze all Medicare, Managed Medicaid and commercial insurance claims data from 2016 to 2021 for procedure codes associated with amputation and diagnosis codes associated with limb difference.

Then, using previously accepted rates of incidence and mortality, we subtracted any deaths that were likely to have occurred within our sample population and extrapolated these findings to any person born before 2016, factoring in the probability of them being alive in the year 2021. Supporting demographic and mortality rate data came from the National Center for Health Statistics Vital Statistics and Census Bureau. Insurance claims data was sourced from the Medicare Qualified Entity Standard Analytic Files, as well as the Inovalon More Registry®.

What you can expect

If our findings indicate that there are over 2 million people living with limb loss in the United States, then we are on track to reach the 3.6 million projection by the year 2050, as initially predicted by Ziegler-Graham et al. We expect that our findings will support the existing body of research on the limb loss and limb difference community. Included in our findings will be information on gender, age, ethnicity, affected body parts, mortality rates, multiple amputations and health conditions diagnosed prior to amputation.

We expect this information will further support the widely accepted correlation between chronic health conditions and limb loss, further prioritizing concerning disease management, amputation prevention and care. Furthermore, by identifying health disparities, we can work to address where, how and to whom they occur. As the need for the latest research on prevention, standards of care and federal regulation increases, the Amputee Coalition will continue our national advocacy efforts to pass legislation and policies to increase the support we provide to our growing community of people with limb loss and limb difference.

Gaining a better understanding of this incredibly diverse community we serve was the motivation behind the investment and the effort undertaken to yield this new information. With it, we aim to remain the trusted source of limb loss and limb difference statistics.