July 31, 2020

Alex M. Azar II
Secretary
United States Department of Health and Human Services
330 C Street SW
Washington, DC 20416

Dear Secretary Azar:

I write on behalf of the National Council on Disability (NCD) to thank you for your ADA Commemoration event on July 30. We were heartened by your statement recognizing that people with disabilities experience significant healthcare disparities and poor health outcomes largely due to the lack of accessible preventive care. This has been a longstanding issue impacting the health of people with disabilities and a policy priority for NCD.

You remarked that the Trump administration has made access to preventive and life-saving care for persons with disabilities a top priority. HHS’ recent inaction, however, on the adoption of accessible medical equipment regulations – a major barrier to preventive care and hence, a significant contributing factor to the healthcare disparities and poor health outcomes you cited – lets stand the widespread lack of accessible medical equipment needed for people with mobility disabilities to obtain preventive care and thereby significantly reduces their opportunity to receive care and treatment equal to those who are not disabled. The foregoing perpetuates health disparities and the paradigm of persons with disabilities using our healthcare system for disease management as opposed to disease prevention.  

In HHS’ 2015 proposed rule on Section 1557 of the Affordable Care Act,^[1] HHS’s Office for Civil Rights (OCR) explained that it considered adding specific language on accessibility standards for medical diagnostic equipment, but that it was deferring doing so because the U.S. Access Board was developing standards for such equipment (AMDE Standards).^[2] OCR said that it intended to issue regulations or policies requiring covered entities to abide by the AMDE Standards after they were finalized by the Access Board.^[3] The Access Board finalized its AMDE Standards on January 9, 2017,^[4] but HHS did not issue a regulation, nor did it issue guidance or policies requiring covered entities to abide by the standards.

In response to HHS’ 2019 proposed rule on Section 1557,[5] NCD sent an advisory letter to Roger Severino, Director of OCR, that discussed the importance of AMDE and urged OCR to incorporate the Standards into the final regulation.[6] It read, in relevant part:

NCD is extremely concerned about the significant barriers to health care posed by the common lack of accessible medical diagnostic equipment (AMDE) in most health care settings. As HHS is aware, lack of AMDE contributes to a lack of preventive care that is necessary for early diagnosis of diseases and has been linked to poor health outcomes, poorer quality of life, and shorter length of life for people with disabilities. When a person cannot be properly examined because he cannot transfer onto an exam table, or an x-ray machine for example, non-diagnosis and misdiagnosis are likely. Disease and illness that can be treatable if caught early, become worse or incurable, resulting in high human and economic costs. The Centers for Disease Control reported that that chronic diseases that are avoidable through preventive care services account for 75 percent of the nation's healthcare spending and lower economic output in the US by $260 billion dollars a year.^[7]

The U.S. Access Board finalized its AMDE Standards on January 9, 2017, and NCD strongly encourages HHS to incorporate these Standards to the Section 1557 Regulation during this rulemaking. Incorporation of the AMDE Standards is a necessary action in eliminating one of the most problematic and persistent barriers to healthcare experienced by people with mobility disabilities.

On June 12, 2020, HHS issued its final rule on Section 1557.[8] OCR declined to incorporate the AMDE Standards, stating such a significant regulatory change required the benefit of notice and public comment.

We, once more, urge HHS to act on this issue of national significance by issuing a proposed rule on the AMDE Standards, or policy guidance that incorporates them. Nearly 5 decades since the enactment of Section 504 of the Rehabilitation Act of 1973, and now three decades since the enactment of the ADA, it remains unjust that people with disabilities continue to experience physical obstacles to healthcare. It remains impossible to justify the billions of dollars spent each year to treat illnesses that can be prevented or more quickly diagnosed through access to accessible preventive care.

Respectfully,

Neil Romano
Chairman  

cc: Roger Severino, Director, Office for Civil Rights