AMA to meet with activists mad about growth-stunting case

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 Washington girl.

The now 9-year-old girl identified only as "Ashley" had surgery at Children's Hospital & Regional Medical Center in Seattle to remove her womb and breast buds, and hormones to keep her permanently child-sized -- treatment some activists say amounted to mutilation.

The 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.

Dr. Michael Maves, the AMA's chief executive officer, said the AMA agreed to meet to hear the activists' viewpoint firsthand and "to perhaps just begin a discussion on this."

He declined to predict whether the AMA would agree to the activists' demands.

"The ethical issues around this I think are difficult for everybody involved. All of our hearts go out to Ashley, her family, the physicians involved. It's one of those cases that captures popular sentiment because of the difficult ethical issues" involved.

Activists from Smock's 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.

"It is a victory," said Donna Harnett, who is among the activists to meet with the AMA. Harnett started a blog Monday to counter Ashley parents' blog. It includes photographs of Harnett's disabled 11-year-old son, Martin, whose medical problems are similar to Ashley's.

The Harnetts want "to show other families and inform the public that there is an option available other than the 'Ashley Treatment.' That option is to let a child grow into adulthood and exist as the human being they are destined to become," the blog says.

In an e-mail to The Associated Press last week, Ashley's parents said they'd received 1,600 messages from people who support their decision and 120 messages from critics.

"Most of the supportive ones are thoughtful" and show that the senders have read the family's blog. "Most of the critical ones are clearly knee-jerk one or two sentence reactions" that appear to be reactions to sensational media headlines, the parents said.

The AMA does not have policy pertaining to the Ashley case. The group's ethics code says 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 AMA policy revision. Policy-making decisions at AMA are made by the group's house of delegates, which next meets at its annual meeting in June.

Maves said the AMA's Council on Ethical and Judicial Affairs is preparing a report to present at the June meeting that will address decision-making in cases involving children. The report, which was started before Ashley's treatment was publicized, may address issues relevant to her case, Maves said.

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.

--- On the Net:

Ashley's parents' Web site: http://ashleytreatment.spaces.live.com

Journal: http://www.archpediatrics.com

Martin Harnett's blog: http://martintreatment.spaces.live.com