Friday, March 23, 2007

Cleveland hospital rejects a terminally ill child (Emilio Gonzales)

A Cleveland hospital rejected a terminally ill child in Austin Wednesday after hospital officials granted the family an extension to keep him on life support.
Jerri Ward, attorney for the family, said 16-month-old Emilio Gonzales was rejected for reasons unknown, but she was trying to find out, so he could get into another hospital.
Seton Hospital officials announced Tuesday night that the child's family has until April 10 to find another place to treat him. Until then, Emilio will remain at the Children's Hospital of Austin, where officials said they will treat him for Leigh's Disease through the 18-day period or until the family finds another hospital.
"They are happy that they have more time to find another hospital that will take Emilio, but the 18 days they have been given will go quick," said Ward.
State Rep. Bryan Hughes and other lawmakers said they have pushed for House Bill 1094, which gives families more time to find treatment for their loved ones. The case has drawn a lot of attention, and lawmakers said it is the perfect example of a mother's fight to save her dying son.
"If doctor decides care is not appropriate, and if that doctor is validated by ethics committee, then, under current law, the family only has 10 days," said Hughes. "From Catarina's experience and hundreds of other families we talked to, 10 days is not enough."
The bill would ensure that hospitals continue treatment pending transfer, giving the patient's family the right to make that decision, not the hospital.
"What they're basically saying is that continued life is not of benefit to the patient, and that is not their right to decide," Ward said.

Wednesday, March 21, 2007

Emilio Gets Extension Till April 10

Austin Children's Hospital has agreed to extend support for Emilio Gonzales until April 10. If anyone has more info, please email so FRIDA can help figure out what's needed next. The story is pasted below and at this link:

Hospital Agrees to Keep Child Alive
Last Edited: Tuesday, 20 Mar 2007, 9:48 PM CDT
Created: Tuesday, 20 Mar 2007, 7:20 PM CDT

-->AUSTIN --

Catarina Gonzales had been fighting to keep her son Emilio alive after Children’s Hospital of Austin announced it would not continue treating the 16-month-old boy. Gonzalez is on life support and the hospital intended on taking him off the ventilator he needs to live on Friday.

However, Tuesday evening, the hospital granted an extension until April 10 at 5:00 p.m. Both the hospital and Emilio’s mother also agreed to keep each other informed of the efforts made to find a facility to transfer Emilio.

On December 28, 2006, Emilio Gonzales' mother brought him to the pediatric intensive care unit at Children's Hospital of Austin. Emilio was diagnosed with Leigh’s Disease and on March 12, a hospital ethics committee voted to end Emilio’s treatment.

“This is care that is medically inappropriate,” explained Michael Regier, spokesperson for the hospital. “The aggressive care this infant is receiving is causing suffering and harm to the infant and without clinical benefit and [it] should be discontinued.”

Catarina Gonzalez says she wants to spend as much time with her son as possible.
“As much as I can be with him I'm gonna be with him,” says Gonzalez. “I don't want them pulling the plug on him saying they're going to turn off the ventilator while he moves and while he opens his eyes.”

Tuesday, March 20, 2007

Online Petition for Emilio Gonzalez: Please Sign

The clock is still ticking on Emilio Gonzalez in Texas. As an added way to help, Linda Edwards of Rochester, New York, has created an online petition with the support of FRIDA. THANK YOU Linda! Linda will monitor the website and forward your signatures to Governor Perry's office. This is a great way for individuals to show their continued support for Emilio and his mom. What you say MATTERS, whether you say it by phone, email, online, fax...

This is the link: Please sign and leave a comment. Distribute to everyone you know. Bounce it around the world. Let's keep up the pressure, everybody! The text of Linda's petition statement is pasted below for those who want a quick look.

The FRIDA Fighters

To: Texas Governor Perry

A Reaction to the Proposed Removal of Emilio Gonzales Life Support

Dear Governor Perry,

This coming Friday, 23 March 2007, 16 month old Emilio Gonzales, against the wishes of his mother, is going to be taken off the respirator that is keeping him alive. We, the undersigned individuals and organizations, join disability rights activists and feminist disability rights activists across the country in denouncing this action as cruel and inhumane.

Under the provisions of The Texas Futile Care Law, the doctors treating Emilio for Leigh's Disease have overrided the wishes of his mother, Catarino Gonzales, that he be given more time to live. With the backing of the hospital's ethics committee, doctors have determined that treatment is "medically futile" and that if another hospital cannot be found for Emilio by Friday, then they will remove his ventilator and feeding tube, which will result in his death.

It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support.

Please act today!!!! Time is running out. Please stop Emilio's 10-day death countdown. Although there are moves to overturn the futility care law to "treatment pending transfer," Emilio cannot wait until the law changes.

Like 6 month old Sun Hudson, who was disconnected from his life support in 2005, against the wishes of his mother, Emilio can't wait for a change in the law. He will die on Friday when he is removed from his ventilator.

The Undersigned

Monday, March 19, 2007

Our Latest Letter to the AMA

March 19, 2007

Dr. Michael D. Maves, Executive Vice President, CEO
American Medical Association
515 N. State Street
Chicago, IL 60610

Dear Dr. Maves:

Thank you for your letter dated March 8, 2007. The meeting we had was historic – the first the disability community has held with the American Medical Association. We want to keep the dialogue alive.

We do appreciate that you will send Senate Bill 799, the Community Choices Act of 2007, to your legislative staff in Washington, DC to review. As we have stated before, we want the American Medical Association to support the bill as soon as possible. Toward that end, we would like to offer our expertise in assisting your staff to learn about this bill and its co-sponsors.

Please reconsider our request to meet members of the Ethics Group, at least on a quarterly basis or to have representation on an advisory committee, similar to the Gay, Lesbian, Bisexual and Transgender Advisory Committee that already exists within your organization.

You may not think it is “fruitful” to establish such meetings, but as an organization whose members treat so many people with disabilities (and receive payment for the services) the responsible thing to do is communicate with the people you serve, as a whole. Especially in light of your recent discussions about pediatric decision-making, how will you know what our perspective is without or representation in your organization’s structure?

We, as women with disabilities, have a very real stake in the decisions you and your members make and we deserve to be heard, at the table. By continuing to refuse to bring us into you committees, you will be maintaining the status quo, a standard of unregulated experimentation and devaluation of people with disabilities. We want to change this standard but we need your help to do that.

We look forward to your reply by April 2 about setting up regular meetings with the Ethics Group or, in the alternative, setting up a disability advisory committee. Thank you very much for your continued response.


FRIDA, in coalition with ADAPT and Not Dead Yet

Many thanks to those who helped draft and edit this letter.
Yes, We Got a Letter From Dr. Maves.

Sorry to be so slackerly folks, but FRIDA/ADAPT/NDY did receive a letter from Dr. Michael Maves in response to our meeting of February 20. The text is as follows below. FRIDA is working on a response letter now. We will do our best to communicate more regularly through this blog!

March 5, 2007

Amber Smock
Feminist Response In Disability Activism
115 W. Chicago Avenue
Chicago, IL 60610

Dear Ms. Smock:

On behalf of the American Medical Association (AMA), I wanted to thank you and your fellow coalition members from Feminist Response In Disability Activism (F.R.I.D.A.), Not Dead Yet, and ADAPT for meeting with Dr. Cecil Wilson and me on February 27, 2007. I thought that our discussion was open and enlightening concerning several issues affecting the disability community. I was particularly touched by Ms. Donna Shaw's comment to the effect that we are all just one tragic event away from being part of the disability community.

I hope that our discussion regarding the issues brought up in the article "Attenuating Growth in Children with Profound Developmental Disability" and related editorial "Growth Attenuation---A Diminutive Solution to a Daunting Problem" that appeared in the October issue of the Archives of Pediatrics and Adolescent Medicine was helpful. While the JAMA/Archives journals are editorially independent of the AMA, I am pleased to see that you have written a letter to the editor of the Archives of Pediatrics and Adolescent Medicine outlining your views on the subject.

The AMA respects your coalition's concerns and position regarding the treatment outlined in this case. While the AMA had no involvement in the case or the decisions that were made, we recognize that the AMA plays a prominent role in educating physicians about the important issues affecting the medical profession---whether it is landmark research, clinical advances or challenging ethical issues.

As Dr. Wilson discussed, the AMA currently has no official policy on the treatments outlined in this article. AMA policy is made by our House of Delegates (HOD) on a biannual basis. The HOD is made up of Delegates from state and national specialty societies in the United States.

I have requested that the AMA legislative staff review the Medicaid Community-based Attendant Services and Supports Act of 2005 (MiCASSA) when this legislation is reintroduced as the Community Choices Act of 2007. As I indicated during our discussion, AMA policy is supportive of reforming the Medicaid program to provide more home and community-based options for Medicaid beneficiaries and allowing an individual to choose their best option for care. Our discussion has highlighted the need for such legislation. We look forward to the opportunity to review the new bill as soon as the authors make it available.

The American Medical Society has been very supportive of the disability community. I believe that the meeting we had on February 20 was useful. I do not believe the scheduling of regular meetings as you requested is indicated presently, but would welcome such a dialogue in the future as other issues surface that warrant discussion.

Thank you again for your activism on behalf of the disability community and your willingness to share your views with the American Medical Association.


Michael D. Maves, MD, MBA

Sunday, March 04, 2007

We're Waiting.

We're still waiting to receive a follow up letter from Dr. Michael Maves. The deadline is end of the day Tuesday, March 6. We are currently simply allowing the AMA time to follow up according to good faith, and we are very aware that the community is awaiting a follow up too. Thank you for your patience, readers. We are very serious about developing this process as a community.

In the meantime, the big mainstream news of the day is about Obama and the Clintons down in Selma, Alabama. They are commemorating the 1965 events that spurred on the passage of the Voting Rights Act, including Bloody Sunday at the Pettus Bridge, March 7, 1965. I would like to take a moment to commemorate Bloody Sunday as well.

In the history of direct action to advance civil rights, the events of Bloody Sunday are a lesson in courage, especially to those of us in the disability rights movement. Those at the bridge that day simply wanted two things: the right to vote and exposure of the kind of deep-seated oppression black people in the South experienced every day. If you have ever looked at pictures of Bloody Sunday, you will know that the marchers faced a mob of cops who were armed and looking for a fight....and yet they marched. Straight up, that takes a lot of gonads, and in the end, they won.

People with disabilities want to be treated as human, and we want acknowledgement that the system needs to change, and we want to see that change HAPPEN. Every day, we in the community deal with our own Bloody Sundays in the hope that some good will come out of it all. Sometimes we lose, but hopefully more often we are winning.

Stay tuned.