[tri-med] Re: [tri-family] Tia needs glasses

----- Original Message -----
From: "The Veazey's"
> Tia will be getting her glasses and I will be doing something about this
first eye doctor soon.....If anyone has any suggestions on what actions I
can take please let me know.

Good on you Patricia!!!
I know that the others will give you loads of advice on dealing specifically
with the first doctor so I wont go there. I will however step slightly
outside the box and give you some other information.

Beware - the following post is passionate and political!!

Part of the reason that I have been so quiet over the last 6 months is
because I have been working solidly and very hard on a submission to the
Australian Law Reform Commision who in conjunction with the Australian
Health Commission were conducting an enquiry into Genetic Privacy. My catch
cry, as many of you know, is that Trisomy 18 (or any other genetic
condition) is NOT a medical DIAGNOSIS but a genetic profile which in turn is
effected greatly by variability of genetic expression and which may lead to
medical problems.

Because many doctors see it as a medical diagnosis our children are
subjected to a lot of discrimination, just as Tia was, simply "because" of
their genetic profile not their medical condition.

At present there are NO laws in any of the major developed countries (eg
USA, UK, Australia) to prevent our children from being discriminated against
in this way. The best anyone can do is to try and wrangle the disability
discrimination laws to cover our kids. But thats not always successful
because the law is on the side of the doctor when it comes to quality of
life. By that I mean there are way too many precedents in law where the
courts have given the doctors the right/power to decide what is quality of
life over the wishes of the parents/carers. (see my previous posts on
various legal cases over the years regarding this)

Last December Australia started bringing in laws to prevent this from
happening. And the enquiry is in part to make this go a lot further to
prevent genetic discrimination. A few weeks ago some of your US senators
(Senators Snowe, Frist, Gregg, Jeffords, Collins and others) put a bill
forward (Bill s.1995) covering this same issue in the US. The UK are also
looking at this issue. It goes far beyond Trisomy of course - and will
eventually cover all aspects of genetic discrimination. For example if ever
they discover the exact genes for breast cancer it will prevent insurance
companies limiting health insurance to exclude oncology treatments for those
that carry the gene etc. It has its problems certainly but........

So I urge you - review the bills, write down this incident and send it to
the senator involved. Write to SOFT and your local chapter chairs and get
them putting together a submission. I am sure that the SOFT Australia board
could be approached, along with the families who contributed to our
submission, to let you use our submission as a base. Even in backward (are
we really?) Australia and in the short time I had, I was able to gather
together over a dozen very real and obvious examples.

Its not a direct answer to your question - sorry. But its something I feel
passionately about.

Man must not allow the clock and the calendar to blind him to the fact that
each moment of his life is a miracle and a mystery.
- H. G. Wells

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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