In Response To Request for Information (RFI): Inviting Comments and Suggestions on Updating the NIH Mission Statement
https://grants.nih.gov/grants/guide/notice-files/NOT-OD-23-163.html
This RFI invites input from interest groups throughout the scientific research, advocacy, and clinical practice communities, those employed by NIH or at institutions receiving NIH support, and the public, on a proposed revised mission statement. The bolded language reflects differences between the current and proposed mission statements.
- Current mission statement:
“To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”
- Proposed revised mission statement:
“To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”
Response of Diane Coleman, JD, President and CEO, Not Dead Yet:
November 24, 2023
The proposed removal of the words “lengthen life” from the mission statement is concerning. While the change may seem benign, it must be considered in light of the current economic incentives and pressures in the healthcare system. The U.S. Department of Health and Human Services Office for Civil Rights recently issued a Notice of Proposed Rule Making (NPRM) (https://www.federalregister.gov/documents/2023/09/14/2023-19149/discrimination-on-the-basis-of-disability-in-health-and-human-service-programs-or-activities#p-156) detailing massive healthcare discrimination impacting people with disabilities including older adults. The NPRM section on Denial of Treatment reported on systemic pressures to forego life sustaining care. During the early phases of the COVID-19 crisis, HHS/OCR also took action to address healthcare discrimination in treatment denial that risked death from COVID. (https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf?fbclid=IwAR351WokrC2uQLIPxDR0eiAizAQ8Q-XwhBt_0asYiXi91XW4rnAKW8kxcog) Our organization, Not Dead Yet, receives calls from family members of persons being pressured to forego life sustaining treatment and even from families where treatment has been denied without prior notice or over their expressed objections under so called “futility” policies. These and other bioethics policies are the subjects of formal reports by the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies. (https://ncd.gov/publications/2019/bioethics-report-series) All of these reports document a healthcare system that all too readily writes off people as inappropriate for treatment or, in effect, “better off dead.” Now is not the time to drop “lengthen life” from the NIH mission because it sends the wrong message. The language should be added back.