A bipartisan pair of senators on Wednesday wrote a letter expressing concerns with the National Institute of Health’s (NIH) proposal to remove a vow to “lengthen life” from the agency’s mission statement.
In a letter to NIH Director Dr. Monica Bertagnolli, Sens. Marco Rubio (R-Fla.) and Tammy Duckworth (D-Ill.) said they are worried removing a stated goal of lengthening life from the NIH mission statement could have negative consequences on the attitudes regarding quality of life for people with disabilities.
Pointing to the “rising openness” in some countries and states towards physician-assisted suicide, the senators wrote they are “concerned that eliminating the stated goal of lengthening life within the NIH’s mission statement without explanation or justification could have a negative impact on people’s existing attitudes towards the quality of life of people with disabilities.”
The NIH last August released the proposed update to its mission statement, which removed the goal to “lengthen life,” while also taking the term “disability” out. It requested all responses to the proposal be submitted by Nov. 24, 2023.
The NIH’s current mission statement reads: “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.”
Under the proposal, it would be changed to: “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.”
According to the proposal, a committee established by the NIH recommended removing the “language of reducing disability” from the statement as it “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be fixed.”
The senators noted while they appreciate the NIH for recognizing the “disparity” in health care research and delivery for those with disabilities, they are asking for Bertagnolli to detail the agency’s motivation to remove the “lengthen life” language and to explain whether outside groups were consulted in the decision.
The senators’ letter, dated Wednesday, further asked what effect the removal of the “lengthen life” phrase will have on the NIH’s research work and grant-making decisions.
Rubio and Duckworth argued those with disabilities should be treated “with the same dignity and respect” as nondisabled individuals, but stereotypes prevent them from receiving the necessary care. The senators referenced a 2022 survey that found more than 80 percent of U.S. physicians reported people with “significant disability” have a worse quality of life than those without disabilities.
“Evidence suggests this could lead to discrimination in how doctors recommend physician-assisted suicide,” the senators’ letter stated. “With such pervasive, harmful views impacting so many Americans, it is imperative that the mission of the nation’s biggest funder of biomedical research be crystal clear.”
The NIH did not immediately respond to a request for comment.
