Research on conditions like spinal muscular atrophy (SMA) led to treatments such as Zolgensma, which costs over $2 million for a single infusion. While disabled children were central to the trials, only families with extraordinary insurance or wealth can access it.

Arizona State University

Even when research produces treatments or interventions designed for disabled populations, structural barriers often make them inaccessible in practice. For example, a new therapy might be priced so high that only affluent patients can afford it, or distributed in formats that exclude people with mobility, sensory, or cognitive differences. The very communities whose participation made the research possible are frequently locked out of its benefits. Research can reinforce broader patterns of exclusion unless access and affordability are deliberately prioritized.

Structural Barriers to Benefit Sharing

Wolf, Leslie E. "Implementing Justice in Research: Beyond Equitable Selection." 2024. Maryland Carey Law Appendix, no. 6, University of Maryland Francis King Carey School of Law Digital Commons, https://digitalcommons.law.umaryland.edu/appendix/6.

Implementing Justice in Research: Beyond Equitable Selection Reference

The article points to concrete ways research benefits could be more fairly shared with disabled communities. This includes ensuring that findings are published in accessible formats (plain language, captions, screen-reader compatible documents), reducing financial barriers to treatments by advocating for insurance coverage or sliding-scale pricing, and designing interventions with accessibility built in from the start. Redistribution also means prioritizing disabled communities when research leads to new programs—such as ensuring clinical trials are followed by community rollouts in disability-centered clinics or schools. 

Redistribution of Benefits

Example of Inaccessible Benefits with Gene Therapy & Rare Diseases

Much research demonstrating stimulant effectiveness came from studies with children and adolescents. Yet in practice, access is shaped by healthcare inequities—people (many times students) from low-income or marginalized backgrounds often face diagnostic hurdles, insurance limits, or stigma that blocks access, even though wealthier peers readily benefit.

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