Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals. We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case of Ruben Navarro. Even though a jury found no crime was committed in his death, the chaos and disregard for medical protocol associated with his final hours should embarrass any medical facility.
Navarro was a young man with cognitive disabilities. At the time the story broke, I had one observation I shared on this blog that's very relevant in the immediate present:
Ruben Navarro would probably have been rejected out of hand as eligible
for being a recipient if he had needed a transplant. It makes the circus
of horrors accompanying the rush to make him a donor all the more
appalling.
No one knows how many individuals with cognitive disabilities experience discrimination - even fatal discrimination - in the US medical system. But every once in awhile, a disturbing example comes to light. When we're lucky, it even comes to light in time for us to do something about it.
Rachel Cohen-Rottenberg was the first of several people on Facebook to call this to my attention. Right now, the top article on
wolfhirschhorn.org (a website devoted to families of individuals with Wolf-Hirschhorn syndrome) is titled
Brick Walls.
The writer has a daughter, Amelia, with Wolf-Hirschhorn and the family has known for some time that Amilia's kidneys are failing and she will need a transplant. They've had good medical support at
Children's Hospital of Philadelphia (CHOP) up to this point. But things take a very bad and ugly turn at the meeting with the transplant team. The story itself is long, and people should read it. The excerpt below appears near the end of
the article:
He pauses as if he is choosing his words carefully. “I have been
warned about you. About how involved you and your famliy are with
Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto
the next person who will help me with the transplant. So I say the words
and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending
the transplant, and when her kidneys fail in six months to a year, you
want me to let her die because she is mentally retarded? There is no
other medical reason for her not to have this transplant other than she
is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right
there. “Ok, so now what? This is not acceptable to me. Who do I talk to
next?”
“I will take this back to the team. We meet once a month. I will tell
them I do not recommend Amelia for a transplant because she is mentally
retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we
have the final say. Feel free to go somewhere else. But it won’t be done
here.”
They both get up and leave the room.
A couple more pieces of information are in order here. First, the family plans on finding a living donor for Amelia. They plan to have themselves tested for a tissue match and a number of people in their large family have also indicated willingness to be tested for compatibility. Also, although I wish I could say the doctor was breaking some kind of law in this instance, physicians are apparently given a lot of latitude when it comes to exercising anti-disability bigotry in the transplant arena.
So what can we do?
First, go and check out "
Who deserves a kidney? CHOP says no kidney for Amelia" on the site titled "
Kidneys and Eyes." The woman who writes the blog has two children with disabilities who have both received kidney transplants. She provides several useful pieces of information in terms of taking some kind of action:
There's this
link to a petition demanding that the transplant team at CHOP approve the kidney transplant that Amelia needs.
This same wonderful writer provided the following in regard to CHOP (link and excerpt from patient rights and contact info for CHOP):
CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color,
age, sex, national origin, religion, handicap, disability, sexual
orientation, who pays for care or your ability to pay.
File a suggestion, complaint, or grievance by discussing with the
clinic, unit, or department manager or other supervisory person, or by
contacting The Children’s Hospital of Philadelphia’s Family Relations
Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983),
by e-mail at FamilyRelations@email.chop.edu,
by fax at 267-426-6990, or by mail addressed to the Family Relations
Office, The Children’s Hospital of Philadelphia, 34th Street and Civic
Center Boulevard, Philadelphia, PA 19104.
PLEASE CIRCULATE WIDELY. AT THIS TIME, DISABILITY ADVOCATES IN PHILADELPHIA COULD BE VERY HELPFUL IN PRESSURING THE HOSPITAL TO REVERSE COURSE. --Stephen Drake