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Shadow
01-17-2012, 11:13 PM
Three-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, epileptic-like seizures and kidney failure. In the future, it's very likely she’ll need a transplant.
But, according to a recent blog post written by her mother (http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/), Chrissy Rivera, her parents have been told by her doctor and social worker that she would not be a candidate for a transplant because of her mental disability, not even if a family member donates a kidney.

http://vitals.msnbc.msn.com/_news/2012/01/17/10175611-bioethicist-transplant-denial-for-mentally-disabled-child-raises-questions

revelarts
01-18-2012, 10:04 AM
obviously wrong. IMO
When people start getting into modern ideas of human fitness and human worth vs the more Christan ideas of all life is precious, you sorta end up here. Of course both have to be mixed with some pragmatism but if you start with the idea that society is more valuable than the individual and the individual can be rated on quick sliding scale based on perceived contribution or drain on it without any reference to any idea of a transcendent value to each life then this type of thing is just the beginning of what you get. I hope the parents can find other to work with.

fj1200
01-18-2012, 02:33 PM
Three-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause ... kidney failure. In the future, it's very likely she’ll need a transplant.


obviously wrong. IMO

Is there an alternate method of deciding who is granted with a scarce resource? Especially where the disease can damage the organ being received?


We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.

I also think the mother is going a bit overboard on what her daughter's rights actually are. She does have the right to live and there is no right to a transplant.

PostmodernProphet
01-18-2012, 06:56 PM
there is no right to a transplant.

the essence of the issue.....if there are six people who need a transplant and one kidney available, who could have the "right" to the kidney.....the next person on the list?......the one most likely to survive?......should someone not able to fully function with a transplant take priority over someone who can.......

in this instance, even after the transplant she will still have the syndrome, which probably means the transplanted kidney is still subject to possible failure.....

Shadow
01-18-2012, 11:13 PM
Is there an alternate method of deciding who is granted with a scarce resource? Especially where the disease can damage the organ being received?



I also think the mother is going a bit overboard on what her daughter's rights actually are. She does have the right to live and there is no right to a transplant.

Normally I would agree,but apparently the parents were told the doctor's wouldn't do the surgery even if the kidney was donated by a family member specifically for this child.

fj1200
01-19-2012, 09:05 AM
the essence of the issue.....if there are six people who need a transplant and one kidney available, who could have the "right" to the kidney.....the next person on the list?......the one most likely to survive?......should someone not able to fully function with a transplant take priority over someone who can.......

in this instance, even after the transplant she will still have the syndrome, which probably means the transplanted kidney is still subject to possible failure.....

If that's the case I definitely wouldn't put her on the list. A transplant should be for where it cures the disease like kidney failure itself. If the kidney fails because of the root disease then you're treating symptoms and not the disease itself; unfortunately here there is no cure.

Having said that, I don't know what the standards are for deciding who gets an organ.


Normally I would agree,but apparently the parents were told the doctor's wouldn't do the surgery even if the kidney was donated by a family member specifically for this child.

Yeah, that was an interesting bit. It seems like that would be an insurance company question of whether to pay for it.

Shadow
01-20-2012, 10:42 PM
the essence of the issue.....if there are six people who need a transplant and one kidney available, who could have the "right" to the kidney.....the next person on the list?......the one most likely to survive?......should someone not able to fully function with a transplant take priority over someone who can.......

in this instance, even after the transplant she will still have the syndrome, which probably means the transplanted kidney is still subject to possible failure.....

My answer would be the next person on the list...obviously they were put on the list for a reason.

Who is to say who will be the most likely to survive? It's all a game of chance... someone appearing perfectly healthy and viable could reject the new organs,end up with blood clotting...hemorrhaging...pneumonia or other infections. Or could recover and get hit by a bus or have a stroke and then become a not "fully functioning individual". No one can know what the future holds.

revelarts
01-23-2012, 06:40 AM
My answer would be the next person on the list...obviously they were put on the list for a reason.

Who is to say who will be the most likely to survive? It's all a game of chance... someone appearing perfectly healthy and viable could reject the new organs,end up with blood clotting...hemorrhaging...pneumonia or other infections. Or could recover and get hit by a bus or have a stroke and then become a not "fully functioning individual". No one can know what the future holds.

ANd If the family member donates then they do the work. the Exclusion because she is not "fit" smacks of eugenics ,... "the cripples, febble minded and Jews shouldn't live."

it's should not be the doctors call. period. If the family is preped to take the risk for the chance.

Let me add to my moral point the capitalistic. If the family pays, there's a doc that will do it.

fj1200
01-23-2012, 09:31 AM
ANd If the family member donates then they do the work. the Exclusion because she is not "fit" smacks of eugenics ,... "the cripples, febble minded and Jews shouldn't live."

it's should not be the doctors call. period. If the family is preped to take the risk for the chance.

Let me add to my moral point the capitalistic. If the family pays, there's a doc that will do it.

It doesn't smack of eugenics, it smacks of scarce resources and the reality of post-transplant economics. Based on the below I don't think this is something that is wholly a doctor's call.


Contraindications and requirements

Contraindications include both cardiac and pulmonary insufficiency, as well as hepatic disease. Concurrent tobacco use and morbid obesity are also among the indicators putting a patient at a higher risk for surgical complications.
Kidney transplant requirements vary from program to program and country to country. Many programs place limits on age (e.g. the person must be under a certain age to enter the waiting list) and require that one must be in good health (aside from the kidney disease). Significant cardiovascular disease (http://en.wikipedia.org/wiki/Cardiovascular_disease), incurable terminal infectious diseases and cancer (http://en.wikipedia.org/wiki/Cancer) often are transplant exclusion criteria. In addition, candidates are typically screened to determine if they will be compliant with their medications, which is essential for survival of the transplant. People with mental illness and/or significant on-going substance abuse (http://en.wikipedia.org/wiki/Substance_abuse) issues may be excluded.
HIV was at one point considered to be a complete contraindication to transplantation. There was fear that immunosuppressing someone with a depleted immune system would result in the progression of the disease. However, some research seem to suggest that immunosuppressive drugs (http://en.wikipedia.org/wiki/Immunosuppressive_drug) and antiretrovirals may work synergistically to help both HIV viral loads/CD4 cell counts and prevent active rejection.
...

In the US health system

Transplant recipients must take immunosuppressive anti-rejection drugs for as long as the transplanted kidney functions. For the routine immunosuppressives Prograf, Cellcept and prednisone, these drugs cost US$1,500 per month. In 1999 Congress passed a law that restricts Medicare from paying for more than three years for these drugs, unless the patient is otherwise Medicare eligible. Transplant programs may not transplant a patient unless the patient has a reasonable plan to pay for medication after the medicare expires, however, patients are almost never turned down for financial reasons alone. 50% of patients with end-stage renal disease only have Medicare coverage.
In March 2009 a bill was introduced in the Senate, 565 and in the House, H.R. 1458 that will extend Medicare coverage of the drugs for as long as the patient has a functioning transplant. This means that patients who have lost their jobs and insurance will not also lose their kidney and be forced back on dialysis. Dialysis is currently using up $17 billion yearly of Medicare funds and total care of these patients amounts to over 10% of the entire Medicare budget.

http://en.wikipedia.org/wiki/Kidney_transplantation

I highly doubt that the family is in a position to meet the requirements even if a family member would donate the kidney.

Gunny
01-23-2012, 11:16 AM
Three-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, epileptic-like seizures and kidney failure. In the future, it's very likely she’ll need a transplant.
But, according to a recent blog post written by her mother (http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/), Chrissy Rivera, her parents have been told by her doctor and social worker that she would not be a candidate for a transplant because of her mental disability, not even if a family member donates a kidney.

http://vitals.msnbc.msn.com/_news/2012/01/17/10175611-bioethicist-transplant-denial-for-mentally-disabled-child-raises-questions

Beleive it or not, it's the norm. If one needs a transplant, one undergoes a meticulous physical exam. If they find a single other problem, transplant denied.