AMA to meet with activists mad about child's stunted growth

CHICAGO -- The American Medical Association bowed to pressure from disabled activists and met Tuesday to hear their opposition to growth-stunting treatment performed on a severely brain-damaged girl.

The now 9-year-old girl identified only as "Ashley" had surgery 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 blog 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.

Advocacy groups including Feminist Response in Disability Activism, Not Dead Yet and Access Living asked the AMA to condemn the treatment.

After a protests, phone calls and faxes demanding that the AMA listen to their concerns, five activists from the grass-roots groups met Tuesday with Dr. Michael Maves, AMA's chief executive officer, and Dr. Cecil Wilson, chairman of the AMA's board of trustees.

While Maves and Wilson made no promises during the meeting at AMA headquarters, the groups said just getting the nation's largest group of doctors to hear their concerns was a victory.

"It was definitely a victory to at least have the dialogue that we had," said Donna Harnett of the Feminist Response group, who attended the meeting.

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.

Maves called the tone of the hour-long meeting positive and said the AMA would consider supporting legislation if it is introduced in Congress. He said the AMA also agreed to consider more meetings with the groups, and will give them a more formal response in writing during the first week in March.

"We don't expect anything to happen overnight. We're in it for the long haul," said Diane Coleman of Not Dead Yet, who also attended the meeting.

Maves said the ethical issues involved in the Ashley case "are difficult for everybody involved. All of our hearts go out to Ashley, her family, the physicians involved."

Still, he said Tuesday's meeting 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.

The AMA's Council on Ethical and Judicial Affairs is preparing a report for the June meeting that will address decision-making in cases involving children. The report, 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.

In an e-mail to The Associated Press last week, Ashley's parents said they'd received 1,600 supportive e-mails 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.

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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