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I have a child with a disability and NIH has made a scary proposal that could impact millions like her

OpinionI have a child with a disability and NIH has made a scary proposal that could impact millions like her

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Does the National Institutes of Health (NIH) truly value the lives and well-being of the most vulnerable in society? Recent actions regarding the organization’s mission statement raise questions about NIH’s priorities, given the way in which our current culture devalues and undermines individuals with disabilities. 

Recently, Sens. Marco Rubio (R-FL) and Tammy Duckworth (D-IL) wrote the NIH about a mooted change to the institutes’ mission statement. The letter notes that NIH has proposed removing the words “lengthen life” from its stated goals. 

Last summer, NIH issued a request for information soliciting comment on a series of changes to its mission statement. In its public request, the NIH claimed that a diversity subgroup focused on individuals with disabilities recommended the change. 

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But what that disability subgroup said varies significantly from what the NIH did. The subgroup recommended that NIH “remove the language of ‘reducing disability’ from the NIH mission statement. The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’” 

happy family outside together

NIH’s proposal to remove the words ‘lengthen life’ from its mission statement raises serious questions for those with disabilities and their families. (iStock)

At no point did the disability subgroup recommend that NIH delete the phrase “lengthen life” from its mission statement. In fact, the subgroup retained that exact phrase in the revised mission statement it recommended in its report.  

For NIH to suggest this change came at the behest of the disability community is factually inaccurate. So why did the NIH propose this change itself, and why is it making false statements about the statement’s origins? 

The phrase “lengthen life” carries significant importance now, given the ways in which some in our society have devalued the lives of the vulnerable. As Rubio and Duckworth note in their letter, the proposed change by NIH comes at a time when countries such as Canada, along with a few states, are advancing the cause of physician-assisted suicide. 

Removing the phrase “lengthen life” from the NIH’s mission would send a powerful — and unfortunate — signal. It could also perpetuate the current negative stereotype whereby nearly five in six physicians (82.4%) responding to one survey believed “that people with significant disability have worse quality of life than nondisabled people.” 

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Sadly, the mentality that extending life for the most vulnerable carries little value pervades many elements of our society. For instance, the quality-adjusted life year (QALY) metric, which some entities have used to evaluate the cost and value of prescription drugs, quantifies an additional year of life for “healthy” people greater than an additional year of life for individuals with disabilities. 

Thankfully, Congress has taken steps to prohibit policymakers from devaluing the lives of the most vulnerable. In 2010, lawmakers acted to ensure that Medicare would not use the QALY metric to determine coverage or reimbursement in that program.  

For NIH to suggest this change came at the behest of the disability community is factually inaccurate. So why did the NIH propose this change itself, and why is it making false statements about the statement’s origins? 

But if the NIH removes “lengthen[ing] life” from its core mission, that change could lead to future taxpayer-funded research implementing the QALY metric, or even projects examining physician-assisted suicide. 

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As the mother of a daughter with a disability, I treasure her life immensely, along with the lives of other special-needs children and individuals with disabilities. I believe our society functions best when we value all God’s children, not just those with “normal” physical abilities.  

I hope the NIH will reconsider its proposal to remove “lengthen[ing] life” from its mission statement, because of the deeply flawed message that removal would send to vulnerable Americans most deserving of our care. 

CLICK HERE TO READ MORE FROM MARY VOUGHT

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