The Illinois Spina Bifida Association (ISBA) opposes SB3499, commonly known as the Medical Aid In Death (MAID) or End of Life Options legislation, introduced in the Illinois General Assembly.
The legislation would allow Illinois doctors to prescribe lethal medication to people diagnosed as having six months or less to live.
Access Living, a Chicago disability advocacy organization, and the American Medical Association (AMA) oppose physician-assisted suicide which, as defined by the AMA, involves a physician facilitating a patient's death by providing the necessary means and/or information.
ISBA’s opposition to this legislation is grounded in several critical reasons:
1. Historical Context: Before the pioneering work of Chicago neurosurgeon Dr. David McLone, infants with spina bifida were systematically denied care. It was not until the 1980s that all US children with spina bifida received medical care (Breu, Giovanna. “Are 'Spina Bifida' Babies Best Left to Die? Surgeon David McLone Challenges a Too-Common Practice.” People, Vol. 15, No. 6, February 16, 1981.) We cannot return to a time when discrimination dictated medical decisions.
2. Persistent Bias: While there are many physicians who provide excellent care to people with spina bifida, current research indicates that many physicians still harbor biases against individuals with disabilities. Such biases lead to dismissive attitudes, citing perceived complexities, time constraints, and cost concerns associated with providing care to individuals with disabilities. ISBA provides continuing education to physicians and medical students to help address these issues.
3. Vulnerability to Neglect and Abuse: People living with disabilities, including spina bifida, are at heightened risk of experiencing medical neglect or abuse. Legalizing physician-assisted suicide may exacerbate this vulnerability. ISBA continues to report any instance of neglect and abuse and assists vulnerable individuals and families with resources. ISBA social workers can help adults with spina bifida appoint a health care power of attorney to help navigate their final wishes.
4. Ongoing Advancements: Medical advancements and research continuously improve the quality of life and life outcomes for individuals living with spina bifida. We are witnessing a pioneering generation of adults living with spina bifida, whose lives defy the limitations once imposed by the condition. ISBA now serves more than 1,000 Illinois residents with spina bifida, from newborns to people in their 80s.
The Illinois Spina Bifida Association opposes SB3499 and remains committed to advocating for equitable access to healthcare and safeguarding the rights and dignity of individuals living with spina bifida and other disabilities.
Founded in 1969 by a group of dedicated parents, the Illinois Spina Bifida Association is a 501c3 nonprofit working to improve the quality of life of children, adults, and families living with spina bifida.