Wednesday, March 12, 2008

Government forbids mother from saving infant's life.

Kataraina Pewhairangi is a young mother, just 18-years-old. And her 9-month old baby, Teyah-Mere, is dying. The child has Biliary Atresia. This is a very rare disorder and it requires surgery in some cases or a liver transplant. The liver produces bile but the bile is retained resulting in cirrhosis of the liver. Without a transplant the baby will die.

You can imagine Kataraina’s relief when she was told that she is a perfect match for her daughter. She is physically capable of donating part of her own liver and can personally save the life of her baby. And she wants to do just that. But she can’t.

Standing in her way are the rules of the socialized health system in New Zealand. The government has an “ethics committee” which makes up rules as to what is “ethical” or not. That which they deem “ethical” is permitted and that which they find unethical is banned. And they have decided that no one under the age of 21 is allowed to participate in a live donation even if it is necessary to save the life of the donor’s own child.

Pewhairangi finds the rule “stupid”. I personally find it unethical. About one in six Kiwis, in need of a liver transplant, die before they receive it. I see no reason that this infant should have to take that chance. Ask yourself what impact this would have on Pewhairangi herself. If she knows she can save her baby’s life and is forbidden to do it, and the baby dies, can you imagine the grief and trauma that will have?

This mother is angry and vowing to fight. “I will stop at nothing. I will go as far as I need to,” she promised. I believe her.

She points out the absurdity of government “ethics” rules here. “I could join the army and go overseas and die for my country” she says, “but I can’t save my daughter’s life.” Welcome to the world of government regulation.

Meanwhile, the infant is in hospital again. She has to receive treament because her condition is worsening. The national health system is happy to continue spending this money but is ignoring a solution to the problem that is literally right under their nose. Grandmother, Lilian Purukamu, says that two other infants from the whanau--the extended family, or Maori grouping to which these women belong-- have already died from the same disease while waiting for liver transplants. She says that she too it outraged and will campaign to change the rules.

But the situation gets worse. The Northern Regional Ethics Committee, which comes up with these rules, may not be allowed to change their own rules even if they see it as necessary. The New Zealand Herald says: “This is because the committee deals with new procedures or studies and not on-going issues.” And, at this time, no one is sure who has the authority to change the rule. An attempt to change the donor age to 20 previously failed and the staff at this “Ethics Committee” say they won’t comment on the issue.

“We’re from government. And we’re here to help you.” Of course, we all know, that the solution to any health-care problem is more government bureaucrats being given the power of life or death over others.

UPDATE: The bad publicity over this regulation forced the hands of David Cunliffe, minister of health for New Zealand. Under the parliamentary system ministers have almost dictatorial powers and can intervene with wide lattitude. Cunliffe called the local health department and got the transplant approved. He claims that the age restriction of 21 only applied to the first six transplants, which certainly would be an odd regulation. He also claims that it is now 16 years of age instead but said health officials have discretion on an individual basis which sounds as if they can override this anytime they wish.

When asked why there was so much confusion within the government as to what the policy actually is he responded: "Let's just say that that matter has been clarified." Now he says "There is no rule... there was only a guideline set for the initial trial." And he insists he not "overturn any of the guidelins." It seems to me that Mr. Cunliffe has only made things more confusing. He says there is no rule setting any age limit yet he also said the age limit was 16. You can't have it both ways. And then when asked to explain this confusion he says that there is no confusion and things have been clarified -- sure, clear as mud.

And local Kiwi papers now report that this doesn't actually clear Pewhairangi to donate part of her live for her baby. It only allows her to begin the bureaucratic process of obtaining permission to save her baby's life. The New Zealand Herald says: "There are extensive criteria that must be met before a person can be a live donor. This includes psychological and medical assessment." So things are still tentative.

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