CHICAGO – The American Medical Association bowed to pressure from disabled activists and agreed to meet Tuesday to hear their concerns about growth-stunting treatment performed on a severely brain-damaged girl.
The now 9-year-old girl identified only as "Ashley" had surgery to remove her womb and breast buds and hormones to keep her permanently child-sized — treatment some activists say amounted to mutilation.
The Washington state treatment was first publicized in a medical journal owned by the AMA, and her parents created a Web site about their "pillow angel" last month to defend their decision. Their daughter was diagnosed with severe brain damage shortly after birth. She can't walk, talk, sit or stand and functions like a young infant.
Her parents say the treatment makes Ashley more portable, more comfortable, and will enable her to remain with her family and receive care at home even as she ages.
"We are still asking that the AMA oppose the Ashley treatment" and to endorse proposals to allow disabled people on Medicaid to get-in home support so they can avoid drastic treatment or being institutionalized, said Chicago activist Amber Smock of the group Feminist Response in Disability Activism.
Activists from the group and several others picketed outside the AMA's Chicago headquarters last month, demanding a meeting. They also have repeatedly phoned and faxed the AMA to press their demands, and considered the AMA's agreement to meet at least a partial victory.
The AMA so far has said only that it does not have policy pertaining to the Ashley case, and that under the AMA's ethics code, medical decisions about incapacitated patients should be based "on the best interest principle."
Tuesday's meeting with AMA executives will not result in any immediate policy revision at AMA. Policy-making decisions at AMA are made by the group's house of delegates, which next meets at the AMA's annual meeting in June.
Ashley's doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal's editor has said that publishing the report does not signal support for the treatment, and a journal editorial called the treatment ill-advised.