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Does the National Institutes of Health (NIH) truly value the lives and well-being of society’s most vulnerable people? How does our current culture devalue and undermine individuals with disabilities? , recent actions regarding the NIH’s mission statement call into question its priorities.
Recently, Sen. Marco Rubio (R-Fla.) and Sen. Tammy Duckworth (D-Ill.) sent a letter to the NIH regarding controversial changes to the institute’s mission statement. The letter notes that the NIH is proposing to remove the words “extend life” from its stated goals.
Last summer, the NIH issued a request for information seeking comment on a series of changes to its mission statement. In its public request, NIH claimed that a diversity subgroup focused on individuals with disabilities recommended the change.
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But what that disability subgroup said is very different from what the NIH did. The subgroup recommended that NIH “remove the phrase ‘alleviate disability’ from the NIH’s mission statement. The current mission statement states that people with disabilities are flawed and need to be ‘corrected.’ “It could be interpreted as perpetuating the disabilityist belief that there is a disability.”
The proposal to remove the phrase “extending life” from the NIH’s mission statement raises serious questions for people with disabilities and their families. (St. Petersburg)
The Disability Subgroup never recommended that the NIH remove the phrase “extend life” from its mission statement. In fact, the subgroup retained that exact wording in the revised mission statement it recommended in its report.
It is factually inaccurate for the NIH to suggest that this change was brought about at the request of the disability community. So why did the NIH propose this change itself, and why did it issue a false statement about the origins of this statement?
The words “extending life” have great meaning now, given the disregard some people in our society place on the value of the lives of vulnerable people. As Rubio and Duckworth note in their letter, the NIH’s proposed changes come at a time when countries such as Canada, along with several states, are pushing the issue of physician-assisted suicide.
Removing the phrase “extend life” from the NIH’s mission would send a strong — and unfortunate — signal. In addition, nearly five out of six (82.4%) of the doctors who responded to a survey believed that “people with severe disabilities have a lower quality of life than people without disabilities,” indicating that the current It can perpetuate negative stereotypes.
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Sadly, the idea that there is little value in extending the lives of the most vulnerable pervades many elements of our society. For example, the quality-adjusted life year (QALY) metric used by some companies to assess the cost and value of prescription drugs indicates that one year of life expectancy for a “healthy” person is equal to the life expectancy of a person with a disease. We are quantifying that it is longer than one year. hindrance.
Thankfully, Congress has taken steps to prohibit policymakers from disregarding the lives of our most vulnerable people. In 2010, lawmakers acted to ensure that Medicare does not use QALY metrics to determine coverage or reimbursement for its programs.
It is factually inaccurate for the NIH to suggest that this change was brought about at the request of the disability community. So why did the NIH propose this change itself, and why did it issue a false statement about the origins of this statement?
But when the NIH removes “extension”;[ing] Given its core mission, that change could lead to future taxpayer-funded studies implementing QALY metrics and even projects investigating physician-assisted suicide.
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As the mother of a disabled daughter, I highly value her life, along with the lives of other special needs children and people with disabilities. We believe that our society functions best when we value all of God’s children, not just those with “normal” physical abilities.
I hope the NIH reconsiders the proposal to remove “extension”.[ing] Because removal would send a deeply flawed message to the vulnerable Americans who most deserve our care.
Click here to read more from Mary Vought
