Avast ye scurvy dogs! Me young 'un be havin' a peculiar ailment, and the NIH be plannin' a frightful decree what be affectin' countless wee ones like 'er.
2024-02-02
Arrr, the scurvy dogs at NIH be wantin' to scuttle the words "lengthen life" from their mission statement. As a parent to a wee lad with a disability, I be findin' it quite disconcertin'! Blimey!
The recent proposed change to the National Institutes of Health's (NIH) mission statement has raised concerns about the organization's priorities and its treatment of individuals with disabilities. Senators Marco Rubio and Tammy Duckworth wrote to the NIH about the removal of the phrase "lengthen life" from its goals. The NIH claimed that a diversity subgroup focused on disabilities recommended the change, but their actual recommendations differed from what the NIH did.The disability subgroup suggested removing the language of "reducing disability" from the mission statement, arguing that it perpetuates ableist beliefs. However, they retained the phrase "lengthen life" in their revised recommendation. The NIH's assertion that the change came from the disability community is inaccurate, leading to questions about their motives.
The phrase "lengthen life" is particularly significant in a society where the value of vulnerable lives is often diminished. It holds importance in the face of physician-assisted suicide movements and negative stereotypes about disabled individuals' quality of life. Removing it would send a negative signal and potentially reinforce the devaluation of vulnerable lives.
Congress has taken steps to prevent the devaluation of the most vulnerable, such as prohibiting the use of quality-adjusted life years (QALY) metrics in Medicare coverage decisions. However, if the NIH removes "lengthen life" from its mission, it could lead to future taxpayer-funded research that uses the QALY metric or even projects exploring physician-assisted suicide.
As the mother of a daughter with a disability, the author emphasizes the value of all individuals' lives and urges the NIH to reconsider its proposal. The removal of "lengthen life" would send a flawed message to vulnerable Americans who deserve care and support.