Exclusion of People with Disabilities in Data Collection

On January 11, 2022, The Centers for Medicare and Medicaid Services (CMS) proposed to cover a new drug, Aducanumab, for the treatment of Alzheimer’s disease. However, within the framework in which it was included, people with Down Syndrome and other intellectual and developmental disabilities would be excluded entirely from the data collected. While The National Center for Disability, Equity, and Intersectionality strongly disagrees with excluding people with disabilities in any research, we know that excluding this community specifically will only further the inequity’s people with I/DD face in obtaining equitable healthcare. 

Data Collection- Image of a clipboard with unreadable graphs pictured. A magnifying glass is lying on top.

Due to the fact that the protein that is the basis for Alzheimer’s disease (amyloid precursor) is present on chromosome 21 and people with Down Syndrome have three copies of chromosome 21, we know that they will experience a 90% chance for developing Alzheimer’s disease. With this in mind, excluding this population during the time in which you are determining the effectiveness of this drug will only further the gap in health care outcomes for a group that is most in need of this treatment. 

We understand that in your position, judgements of quality of life and outcome measures are thought to be necessary when making decisions about the effectiveness of a new treatment. In a recent survey, 82% of physicians reported they believed that people with significant disabilities have worse quality of life than non-disabled people. However, what we also know is that “many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence .” This ‘disability paradox’ only further highlights the fact that the social stigma of disability leads people to believe that disability will inevitably reduce well-being and we worry this assumption may have motivated this exclusion from these clinical trials. 

We encourage you to question the basis in which you made these decisions to exclude people with Down Syndrome and other Intellectual and Developmental Disabilities to ensure that you are not making this decision based off of a bias towards what it means to have these types of disabilities. Instead, we invite you to lead the effort in closing the gap for healthcare inequities for people with disabilities. 

The Center for Disability, Equity, and Intersectionality aims to identify and reduce healthcare inequities, including ableism and stigma, for people with disabilities. For more information, go to www.ThinkEquitable.com

Iezzoni, Lisa I., Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell. Physicians’ Perceptions Of People With Disabilities And Their Health Care. HealthAffairs. Feb. 2021; 40(2). Available at: https://doi.org/10.1377/hlthaff.2020.01452.

Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Social science & medicine (1982), 48(8), 977–988. https://doi.org/10.1016/s0277-9536(98)00411-0