 | On November 13, 2023, 100 patient groups and individuals signed onto the Partnership to Improve Patient Care's (PIPC) letter to HHS supporting the agency’s efforts to advancing a rulemaking that would update regulations implementing Section 504 of the Rehabilitation Act. |
The signatories recommended that HHS should advance a final rule that uses language consistent with Section 1182(e) of the Affordable Care Act to restrict the use of discriminatory value assessments. Doing so would be consistent with current developments and laws and discourage confusion; allow for consideration of how value assessments may discriminate by classifying people with disabilities as inferior whether in measures of life extension or in quality-of-life improvement; be consistent with NIH efforts to address ableist assumptions about quality of life that may also drive value assessments; and spur meaningful innovation in the development and use of measures of quality of life and improvement that do not discriminate based on the assumed “worth” of patients with disabilities to treat.
The signing organizations also recommended that HHS explain that the final rule related to Medical Treatment applies to payer policies advanced by recipients of federal financial assistance, recognizing how recipient payers cannot categorially exclude or limit access to care that is not futile for individuals with disabilities and clarifying that it is not a legitimate, nondiscriminatory reason to selectively deny or limit care to a person with a disability based on the determination the person’s quality of life is not worth the cost of treatment. The letter also recommended HHS collect, analyze, and publicly report disability data.
Additionally, comments were submitted by the Consortium of Constituents with Disabilities, the ALS Association and the Alliance for Aging Research and signatories to those letters that similarly communicated their support for a more expansive view of the use of discriminatory measures of value assessment,
The signing organizations also recommended that HHS explain that the final rule related to Medical Treatment applies to payer policies advanced by recipients of federal financial assistance, recognizing how recipient payers cannot categorially exclude or limit access to care that is not futile for individuals with disabilities and clarifying that it is not a legitimate, nondiscriminatory reason to selectively deny or limit care to a person with a disability based on the determination the person’s quality of life is not worth the cost of treatment. The letter also recommended HHS collect, analyze, and publicly report disability data.
Additionally, comments were submitted by the Consortium of Constituents with Disabilities, the ALS Association and the Alliance for Aging Research and signatories to those letters that similarly communicated their support for a more expansive view of the use of discriminatory measures of value assessment,
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| ocr-504-sign-on-final-11.13.23.pdf |
