Tani's account is correct. The issue was competence. Actually, this got
settled pretty well as soon as it was referred to the university's
attorneys. The federal intervention in the Oregon Health
Plan, declaring that the ADA prohibits
health care allocation ranking
based on disability, was foremost in the minds of people.
Sandra Jenson died a year or two after the transplant. My understanding
is that she dies of a brain tumor. Such tumors are related to
transplantation - the suppression on the immune system for the purposes of
transplantation makes all transplantation patients vulnerable to tumors.
The physicians in this case said that there were some medical aspects that
were unexpected ... they believe they learned an immense amount from the
case. This is standard in medical practice - for instance, if only adult
males have been the drug test subjects - there isn't much of a clue about
treating
pediatric patients until some such patients have been treated.
Which comes back to the issue of quality of medical care for PWDs. To the
extent that medicine lacks experience in using a particular procedure on
people like ones self, the care one gets is going to involve a higher
risk. Unfortunately, health care professionals usually don't deal with
this problem rationally. Either they displace their lack of knowledge by
refusing to treat, or they treat without being responsive to nuances and
differences.
On Mon, 26 Jul 1999, Tanis M. Doe wrote:
> I dont have al the details, partly because of memory gaps, but a member of
> Self Advocates People First in California was turned down for a heart lung
> transplant because of Down s Syndrome and an uproar came fromthe
> disability rights movement because the people who decided had not even MET
> the woman (who by the way is a wonderful advocate) anyway- their argument
> was not life expectancy but her ability to follow the regime of follow up
> necessary to keep the transplants without rejection ( how well could she
> follow instructions) anyway, needless to say she is alive and well and
> living with brand new heart and lung and another victory for disability
> rights, im sure someone on the list fromCalifornia can give you the name
> and case citation but it was the media that made it work- it portrayed her
> and her friends as competent, contributing citizens, not as helpless,
> hopeless disabled useless eaters. Its a big deal and we WON, I hope
> this will help your case in some way although I dont know the child
> involved. Tanis
>
> pls send attachments to [log in to unmask] not to this email thanks.
>
> On Mon, 26 Jul 1999, Michael Peckitt wrote:
>
> > For your attention:-
> >
> > I have just read in the paper today that the family of 9 year old girl with
> > Down's Syndrome from Sheffiled, Britain will not be considered for a heart
> > transplant.
> >
> > >From the Daily Telegraph
> >
> > "Leeds General Infirmary told them [the family] that their daughter would
> > not be considered for heart surgery because of her disability"
> >
> > "consultants believed that refering children with Down's syndrome could give
> > 'false hope'" as people with Down's syndrome generally do not have a long
> > life expetancy and there are a shortage of heart.
> >
> > The Down Syndrome Association stated:-
> >
> > "A lot of medical professionals think peole with Down's syndrome aren't
> > worth putting the effort in for,.....Their argument is that people with Down
> > syndrome don't have the same quallity of life, but they are not informed
> > enough to make that decision."
> >
> > Mencap also responded claiming it"confirms discrimination".
> >
> > I have very mixed and troubed feelings about this coming from a medical
> > family (though I am not a doctor myself), and can thus see their point and
> > as a person with a disability. Any views?
> >
> > Thank you for your time
> >
> >
> > ______________________________________________________
> > Get Your Private, Free Email at http://www.hotmail.com
> >
>
>
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