Tuesday, January 31, 2012

Update on Philadelphia Transplant Denial to Girl with Developmental Disabilities

I'm happy to share updates on the apparent case of disability bias in a situation involving the denial of a transplant to girl with developmental disabilities, which we reported on earlier this month.

First, I received this email message from the managers of wolfhirschhorn.org on January 26:
Hello wolfhirschhorn.org followers:

Over the course of the last week, there have been new updates on the situation 
with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took 
place between a number of the key leaders of CHOP, the Rivera's and 
wolfhirschhorn.org. The purpose of the meeting was to get an understanding of 
the chain of events that led to the "Brick Walls" posting. The meeting lasted a 
little over 90 minutes and the Rivera's had an opportunity to tell their side of 
the story and the related concerns about Mia's needs and how CHOP handled the 
situation. CHOP agreed that the system is broken and that they are taking steps 
to fix the process. In addition to addressing Mia and the next steps with her 
transplant discussions, a few suggestions were made to CHOP about their 
involvement in a more macro view of awareness around transplant rights for the 
disabled, and public and medical community education around the "mentally 
retarded" phrase. CHOP agreed to follow up and communicate their action items by 
the end of this week.

Mia and the Rivera's are planning a visit to CHOP in the near future to 
determine CHOP's role in her transplant and her on-going medical care. Once that 
meeting takes place, we will issue a statement on the status of Mia, her care, 
and CHOP's involvement moving forward.

To keep up to date on details of this story, LIKE us on Facebook 
(https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter 
Today - January 31 - the Philadelphia Inquirer reports more good news:

The parents of 3-year-old Amelia Rivera, the disabled girl who was initially rejected for a kidney transplant at Children's Hospital of Philadelphia, now say the hospital is willing to consider such an operation.

The Riveras said they met with medical personnel at the hospital for one hour Friday, after which they were given instructions on how to proceed with a possible transplant - including how to have family members tested as potential donors.

Chrissy and Joseph Rivera said they were not told whether their daughter, who goes by the nickname Mia, would be medically eligible. But the couple, of Stratford, Camden County, said Monday that they saw the meeting last week as a step forward from what happened earlier this month.

"As of now, we're taking this as a positive sign," Chrissy Rivera said.
Read the rest of the article here.

This is good news.  I don't know if we'll ever know the full story.  Maybe this was a case of one doctor's bigotry - or his really really bad communication skills (both are plausible, IMO).  In any case, the current discussions being reported are more in line with the accounts that many individuals have shared regarding their overwhelmingly positive experiences at Children's Hospital of Philadelphia.  It looks like things are working their way toward a satisfying conclusion.  --Stephen Drake

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