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New Born Screening (NBS)

I have spent some time over the past week thinking of what matters to raise in this newsletter. Despite the many different and currently important topics that concern a variety of the Leukodystrophies I could not go pass the fact that a letter written by Professor Kohlschuetter and myself was sent to over 22,628 people worldwide and we only received a few dozen responses. I am aware that some of that number would have received it more than once as they could be on a number of support and advocacy groups that the letter was sent to.

I found it very difficult to understand this lack of response and it pointed out to myself that perhaps I had poorly presented this letter and its purpose to change the future for the Leukodystrophy families of the world. I am very sorry for this confusion and that it may have been perceived as an academic exercise and not as intended as a means of gathering powerful information to change set and static thinking about whether to undertake New Born Screening for incurable diseases and in particular the Leukodystrophies.

 A Checklist

To put it more succinctly the purpose of the letter is to establish some of the following:
  1. Do you believe that you have a right to have your child correctly diagnosed within the earliest possible timeframe?
  2. Do you believe that it is your right to have a say in your newly born child's health?
  3. Do you believe that your child should be subjected to a variety of needless, and often unpleasant, costly testing procedures over a lengthy time period until a correct diagnosis may be achieved?
  4. Do you believe that it is fair to be diagnosed after your window of opportunity has expired due to an avoidable late diagnosis?
  5. Do you believe that the diagnostic process should be decided on a money basis?
  6. Do you believe that the health authorities should refuse NBS on the basis of initial cost and not the saving to the health system?
  7. Do you believe that NBS should only be done when there is a known cure for that disorder?
  8. Do you believe the cost of approximately $2.00 for the NBS test alone is exorbitant?
  9. Do you believe that early awareness gives you better opportunities to plan your life?
  10. Do you believe that it is better to deal with it when symptoms finally occur?
  11. Do you believe that NBS offers the earliest awareness and allows research to commence to find the cures previously impeded by lack of this knowledge?
  12. Do you believe that you should be told by Bioethicists who have no experiential evidence of the disorder that you have no right to have it tested?
  13. Does it concern you that a test may produce some false positives or negatives even though they are eliminated before you are given the final and correct diagnosis?
  14. Does it concern you that you are being denied your rights to have a say in your family's health?

Facts

There exists inherent traditionalism in our worldwide health systems of some ethicists, scientists and clinicians who see their role as controlling the issue of NBS. I have yet to meet one who has ever had a personal family experience and opposes NBS. Traditionalism is the dead beliefs of the living.
 
 There also exists an inherent tradition in our worldwide health systems of other ethicists, scientists and clinicians who see their role as expanding knowledge and enhancing science, medicine and the reality that ethics is a personal and individual subject and not a dictatorial subset of social work. I have yet to meet one of these who has ever had anything but a personal, caring and family based approach to the family’s experience or opposes NBS. Tradition is the living beliefs of the dead.

Purpose

We need your thought to produce the data required to overcome mistaken and unproven beliefs and mount a worldwide campaign to re-educate those who are preventing you from having any say in your child’s medical life. This would allow the writing of a vital paper/s giving evidence on the findings.
My request to you for the final time is please take just a few moments now and send us your thoughts to these questions.

Please send to both email addresses:

Bob Wyborn
bobwyborn@bigpond.com
 
Professor Alfried Kohlschuetter
kohlschuetter@uke.uni-hamburg.de
 
 
Brendan Wyborn with his family
Copyright © 2016 Leukodystrophy Resource & Research Organisation Inc, All rights reserved. 
 

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Leukodystrophy Resource & Research Organisation Inc · PO Box 209 · CLONTARF BEACH, Queensland 4019 · Australia

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