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Transplants and politics - 6/6/2013 10:39:25 AM   
tazzygirl


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Status: offline 		This is making the rounds, so i thought I would toss it up here.

http://www.politico.com/story/2013/06/sarah-murnaghan-lung-transplant-ruling-kathleen-sebelius-92299.html

A federal judge on Wednesday ordered HHS Secretary Kathleen Sebelius to allow 10-year-old Sarah Murnaghan to be moved to the adult lung transplant list, giving her a better chance of receiving a potentially life-saving transplant.

The quick and unusual ruling, made after a hastily scheduled emergency hearing, follows a campaign by the family and some members of Congress to pressure the Obama administration to change a federal policy that puts children under age 12 at the bottom of the list of those who can receive donated adult lungs.

Murnaghan has cystic fibrosis and her doctors have said she may only live a few weeks without the transplant. She has been on the waiting list for pediatric donors for 18 months, but they are more rare and her condition is worsening. There’s no guarantee that even with the judge’s ruling, a suitable donor will become available in time, but her odds would be better.

The judge’s action may have taken some of the immediate heat off Sebelius and the Obama administration. Yet it opened up a host of other questions about organ donation policy and hot-button health care politics.

U.S. District Judge Michael Baylson wrote in a temporary restraining order that by refusing to set aside the existing rule for children, Sebelius had failed “to protect the very few children nationally who are subject to it.” He added that the evidence showed that the rule “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.” Baylson, a George W. Bush appointee, scheduled a hearing for June 14.


Anyone want to take this one on? Because I have massive issues with anyone expecting a politician to override the rules on a transplant list.




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RE: Transplants and politics - 6/6/2013 10:46:49 AM   
JeffBC


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quote:

ORIGINAL: tazzygirl
Anyone want to take this one on? Because I have massive issues with anyone expecting a politician to override the rules on a transplant list.

heh, you think? Interesting to point out that if this had been a 10 year old boy the odds of this happening are near zero.


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RE: Transplants and politics - 6/6/2013 10:48:51 AM   
tazzygirl


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Status: offline 		3 other children are in the same hospital waiting for the same organs. So money buys this girl a set of lungs?

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RE: Transplants and politics - 6/6/2013 10:51:58 AM   
JeffBC


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quote:

ORIGINAL: tazzygirl
3 other children are in the same hospital waiting for the same organs. So money buys this girl a set of lungs?

I actually started to google to find out how this child's parents got this sort of action. It HAS to be money or connections. I'm struggling to imagine this same story with it being a poor black girl from inner city Detroit.

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RE: Transplants and politics - 6/6/2013 11:10:06 AM   
DesideriScuri


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quote:

ORIGINAL: tazzygirl
This is making the rounds, so i thought I would toss it up here.
http://www.politico.com/story/2013/06/sarah-murnaghan-lung-transplant-ruling-kathleen-sebelius-92299.html
A federal judge on Wednesday ordered HHS Secretary Kathleen Sebelius to allow 10-year-old Sarah Murnaghan to be moved to the adult lung transplant list, giving her a better chance of receiving a potentially life-saving transplant.
The quick and unusual ruling, made after a hastily scheduled emergency hearing, follows a campaign by the family and some members of Congress to pressure the Obama administration to change a federal policy that puts children under age 12 at the bottom of the list of those who can receive donated adult lungs.
Murnaghan has cystic fibrosis and her doctors have said she may only live a few weeks without the transplant. She has been on the waiting list for pediatric donors for 18 months, but they are more rare and her condition is worsening. There’s no guarantee that even with the judge’s ruling, a suitable donor will become available in time, but her odds would be better.
The judge’s action may have taken some of the immediate heat off Sebelius and the Obama administration. Yet it opened up a host of other questions about organ donation policy and hot-button health care politics.
U.S. District Judge Michael Baylson wrote in a temporary restraining order that by refusing to set aside the existing rule for children, Sebelius had failed “to protect the very few children nationally who are subject to it.” He added that the evidence showed that the rule “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.” Baylson, a George W. Bush appointee, scheduled a hearing for June 14.
Anyone want to take this one on? Because I have massive issues with anyone expecting a politician to override the rules on a transplant list.


This one is messy. What's being asked is for Sebelius to take a 10-year old and put her at the front of the adult list. That is, she is being asked to make judgment call that this girl deserves lungs over that of those already on the list.

I don't envy anyone that has any authority over that list.

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RE: Transplants and politics - 6/6/2013 11:12:59 AM   
JstAnotherSub


Posts: 6174
Status: offline 		It is not money. From everything I have read, they are persistent, fighting for their daughter.

I do not like a judge overriding doctors because I think it sets a precedent, however, I also can not figure out why a heart would not be distributed according to need, and if this child needs an available heart, and is the sickest on the list, she should get it, IMO.

I hope this causes them (the transplant committee)to review the policy and make changes, if needed.

eta
quote:

A wholesale policy change would add perhaps 20 children from ages 8 to 11 annually to the adult waiting list, which now includes more than 1,600 patients.

Read more: http://www.foxnews.com/health/2013/06/06/parents-file-lawsuit-in-girl-lung-transplant-case/#ixzz2VSf1EdWL


< Message edited by JstAnotherSub -- 6/6/2013 11:15:31 AM >

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RE: Transplants and politics - 6/6/2013 11:17:53 AM   
tazzygirl


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Status: offline 		Its not a heart, its lungs. Which are harder to transplant.

And while I agree the parents should fight, the precedent set here is a dangerous one for our transplant organization.

Not all organs fit into all bodies. The ruling, until now, was 12. This girl is 10.

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Telling me to take Midol wont help your butthurt.
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RE: Transplants and politics - 6/6/2013 11:32:02 AM   
JstAnotherSub


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Status: offline 		No idea why I wrote heart-lol.

The first child to receive a pediatric heart/lung transplant in Georgia was in my sons kindergarten and first grade classes, and they fancied them selves to be bf and gf.

She came to school very little in 1st grade, and passed away just before Christmas that year. My heart broke for her parents, and, for my son, who acted so brave in the funeral home, then when we walked out the door, fell into me and bawled for 15 minutes.

I hope science will come up with a way to help folks live without a donor having to die.

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RE: Transplants and politics - 6/6/2013 11:33:32 AM   
JstAnotherSub


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quote:

ORIGINAL: tazzygirl

Its not a heart, its lungs. Which are harder to transplant.

And while I agree the parents should fight, the precedent set here is a dangerous one for our transplant organization.

Not all organs fit into all bodies. The ruling, until now, was 12. This girl is 10.


Do ypou not think it would be a good idea to allow an organ that would fit to go to the sickest person, no matter their age. I know 10 year olds that are bigger than adults that I know.

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RE: Transplants and politics - 6/6/2013 11:39:28 AM   
Rule


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quote:

ORIGINAL: tazzygirl
Not all organs fit into all bodies.

Quite: transplant organs ought to be immunologically compatible.

In any case: I am opposed to all transplants.

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RE: Transplants and politics - 6/6/2013 11:51:07 AM   
tazzygirl


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quote:

ORIGINAL: JstAnotherSub


quote:

ORIGINAL: tazzygirl

Its not a heart, its lungs. Which are harder to transplant.

And while I agree the parents should fight, the precedent set here is a dangerous one for our transplant organization.

Not all organs fit into all bodies. The ruling, until now, was 12. This girl is 10.


Do ypou not think it would be a good idea to allow an organ that would fit to go to the sickest person, no matter their age. I know 10 year olds that are bigger than adults that I know.


I do agree, they should. But then who decides the guidelines? The transplant organization is made up of a board of members that consists of both transplant experts and transplant patients. As medicine progresses, we need to revisit those rules.. and I do believe they do, on a yearly basis.

But to slam Sebelius or the Obama administration for not taking the political stand they were being demanded to take... that is a politician deciding the best medical treatment for a child.. is really laughable considering the number of those screaming about "death panels"

The cry would be far different had Sebelius decided that someone who isnt politically correct to the right be given an organ over someone who is politically correct to the right.

Court was the only option here. One correctly taken. And its good to see the Judge at least admitted there were others who are waiting, and if they are in his jurisdiction, then IF an application is made to his court, he will rule in their favor, temporarily, as well.

But how many parents have that kind of money? Most cant pay for the transplant alone.

So, THOSE parents have to wait, and hope, and pray, realizing that the only difference between their child living or dying may be money.

And people wonder why I hate the health care system in the US.

Money should never be an issue. And its funny how many are ignoring this fact in THIS case. Money definitely made a difference.

_____________________________

Telling me to take Midol wont help your butthurt.
RIP, my demon-child 5-16-11
Duchess of Dissent 1
Dont judge me because I sin differently than you.
If you want it sugar coated, dont ask me what i think! It would violate TOS.

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RE: Transplants and politics - 6/6/2013 12:38:09 PM   
Rule


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quote:

ORIGINAL: tazzygirl
Money should never be an issue.

Money always ought to be an issue.

Let the girl die. Let everybody who needs a transplant, die.

Reduce the amount of sugar that is added to food and the number of people who require transplants is likely to drop.

And of course lots of people with cystic fibrosis are Jews. Have them convert to Christianity and within a handful of generations most of the cystic fibrosis will disappear.


_____________________________

"I tend to pay attention when Rule speaks" - Aswad

"You are sweet, kind, and ever so smart, Rule. You ALWAYS stretch my mind and make me think further than I might have on my own" - Duskypearls

Si vis pacem, para bellum.

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RE: Transplants and politics - 6/6/2013 1:00:43 PM   
tazzygirl


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Status: offline 		CF (cystic fibrosis) is a disease that is passed from one generation to another. It is found in all races and ethnic groups. It affects about the same number of males and females. Around the world, white people (Caucasians) with ancestors from northern Europe are most likely to be born with the genes that cause CF.

http://cvscaremarkspecialtyrx.com/node/60

Race. Although cystic fibrosis occurs in all races, it is most common in white people of Northern European ancestry.

http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=risk-factors

I think that covers far more than just Jews.

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Telling me to take Midol wont help your butthurt.
RIP, my demon-child 5-16-11
Duchess of Dissent 1
Dont judge me because I sin differently than you.
If you want it sugar coated, dont ask me what i think! It would violate TOS.

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RE: Transplants and politics - 6/6/2013 1:07:53 PM   
Rule


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Status: offline 		Sure. I never said it did not.

How about this link?

quote:

Cystic fibrosis is one of the 18 genetic diseases for which Ashkenazi Jews are known to be at heightened risk


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"I tend to pay attention when Rule speaks" - Aswad

"You are sweet, kind, and ever so smart, Rule. You ALWAYS stretch my mind and make me think further than I might have on my own" - Duskypearls

Si vis pacem, para bellum.

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RE: Transplants and politics - 6/6/2013 1:24:08 PM   
Phydeaux


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quote:

ORIGINAL: tazzygirl




Money should never be an issue. And its funny how many are ignoring this fact in THIS case. Money definitely made a difference.


Why exactly do you think money should never be an issue.

Money is ALWAYS an issue.

Healthcare isn't free. When you direct government money at the "issue" you are saying spending this money is more important than building roads. Creating jobs. Saving lives from diabetes vs. saving lives from cancer.

Every system - including canada's makes choices over where to spend health care dollars and where not to. There is a second issue that money paid in the form of compulsion (taxes) vs life liberty and the pursuit of happiness.

I know that you think that all people should have all ailments cared for - but is that true if taxes were50%, 60%, 90%? At what point does this desire for medical care get balanced with my desire to make a living?

I admire you impulse to care for everyone. But this lack of a reality gene (as exemplified by the attitude that money should never be an issue) frustrates the hell out of those of use who are more pragmatic.

If it cost 1 million dollars to give a child one more year of life - is it worth it?
If it costs 10 million dollars to give a child one more year of life - is that worth it?
Even if you could save 10,000 other children for the same cost?

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RE: Transplants and politics - 6/6/2013 1:30:05 PM   
DesideriScuri


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quote:

ORIGINAL: Phydeaux
quote:

ORIGINAL: tazzygirl
Money should never be an issue. And its funny how many are ignoring this fact in THIS case. Money definitely made a difference.

Why exactly do you think money should never be an issue.
Money is ALWAYS an issue.
Healthcare isn't free. When you direct government money at the "issue" you are saying spending this money is more important than building roads. Creating jobs. Saving lives from diabetes vs. saving lives from cancer.
Every system - including canada's makes choices over where to spend health care dollars and where not to. There is a second issue that money paid in the form of compulsion (taxes) vs life liberty and the pursuit of happiness.
I know that you think that all people should have all ailments cared for - but is that true if taxes were50%, 60%, 90%? At what point does this desire for medical care get balanced with my desire to make a living?
I admire you impulse to care for everyone. But this lack of a reality gene (as exemplified by the attitude that money should never be an issue) frustrates the hell out of those of use who are more pragmatic.
If it cost 1 million dollars to give a child one more year of life - is it worth it?
If it costs 10 million dollars to give a child one more year of life - is that worth it?
Even if you could save 10,000 other children for the same cost?


That's not even close to the same situation. Here, the money involved is buying access, or attempting to buy access, to the front of a line. That is where money shouldn't have anything to do with it.


_____________________________

What I support:

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  • Personal Responsibility
  • Help for the truly needy
  • Limited Government
  • Consumption Tax (non-profit charities and food exempt)

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RE: Transplants and politics - 6/6/2013 3:15:57 PM   
tazzygirl


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quote:

Every system - including canada's makes choices over where to spend health care dollars and where not to. There is a second issue that money paid in the form of compulsion (taxes) vs life liberty and the pursuit of happiness.


Healthcare in Canada differs significantly from the United States. All Canadians have access to healthcare, and all 10 provinces of Canada have universal healthcare insurance plans that cover hospitalization and physician care. Each province administers its own healthcare system financed on an equal basis with the federal government, and each provincial resident is issued a health card that must be presented at hospitals or physicians' offices whenever medical care is requested. Canadian healthcare provides coverage for organ and tissue donation, transplantation, and cyclosporine for life for all transplant recipients. Canadian healthcare encompasses four basic principles: (1) universal coverage, (2) comprehensive coverage, (3) accessible care for all Canadians, and (4) portability of care. Canada has no national organization for organ donation and transplantation. The organ donation rates in Canada have averaged 14.1 donors per million population over the last 5 years, and are unchanged from previous years.

http://www.ncbi.nlm.nih.gov/pubmed/9295590

quote:

If it cost 1 million dollars to give a child one more year of life - is it worth it?
If it costs 10 million dollars to give a child one more year of life - is that worth it?
Even if you could save 10,000 other children for the same cost?


I read somewhere where the cost of transplants (kidney I believe) were 23,000 a year, and 6,000 a year for anti-rejection meds.

I found it....

Burden and Cost of Care
 Hemodialysis is the treatment used in the
majority of dialysis cases and it costs
roughly $60,000 per patient per year.
 The one-time cost for a kidney transplant
is approximately $23,000, plus $6,000
per year for medication necessary.
 Over a five-year period, a transplant is
approximately $250,000 less expensive
per patient than dialysis while improving
quality of life.

http://www.kidney.ca/document.doc?id=1376

In the US? $262,900, including the $18,200 for meds. Canada's issue for transplantation is signing people up.

http://www.transplantliving.org/before-the-transplant/financing-a-transplant/the-costs/

_____________________________

Telling me to take Midol wont help your butthurt.
RIP, my demon-child 5-16-11
Duchess of Dissent 1
Dont judge me because I sin differently than you.
If you want it sugar coated, dont ask me what i think! It would violate TOS.

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RE: Transplants and politics - 6/6/2013 3:26:18 PM   
tazzygirl


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Joined: 10/12/2007
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quote:

I admire you impulse to care for everyone. But this lack of a reality gene (as exemplified by the attitude that money should never be an issue) frustrates the hell out of those of use who are more pragmatic.


I wanted to address this seperately.

So you are saying you want to save money. And yet you have no clue the costs associated with dialysis... diabetes.... liver diseases... and then they get disability.

Renal failure is the only disorder rubber stamped "Yes" for disability... when it finally comes. Rarely does disability argue with that diagnosis.

I can tell you that a dialysis patient ran on a machine as a traveling patient back in 1998 was 800 - 900 dollars... a treatment. I can hazard a guess, and call it educated... that the cost of treatments are now at least that much. We are now talking at least 125K a year... just for that treatment. That doesnt include blood work, hospital dialysis treatments (an extra charge), hospital visits (these are often some of the sickest patients I have tended to), Physician visits, ect ect ect.

My reality is quite sound and secure, having worked for a few years in the field of both dialysis and transplants... agency work.. Im sure you know all about it.

We havent even discussed the cost to employers for sick time, disability, family leave, ect ect ect.

Now, I realize you may not know all the in's and out's of this, but dont assume that others are not operating on a reality basis here. Some of us actually know what we are talking about.

< Message edited by tazzygirl -- 6/6/2013 3:27:12 PM >

_____________________________

Telling me to take Midol wont help your butthurt.
RIP, my demon-child 5-16-11
Duchess of Dissent 1
Dont judge me because I sin differently than you.
If you want it sugar coated, dont ask me what i think! It would violate TOS.

(in reply to Phydeaux)
Profile   Post #: 18
RE: Transplants and politics - 6/6/2013 3:42:46 PM   
tazzygirl


Posts: 37833
Joined: 10/12/2007
Status: offline 		A federal judge has ordered that a second child at a Philadelphia hospital - a New York City boy - be put on the adult waiting list for donated lungs.

The ruling from U.S. District Judge Michael Baylson involves 11-year-old Javier Acosta of the Bronx, who has cystic fibrosis. His mother filed a lawsuit Thursday that says he will die soon unless he gets a lung transplant.

The decision comes a day after a national organ transplant network complied with Baylson's unusual order to place a dying 10-year-old girl on the list.

Children under 12 are currently matched with pediatric donors, which are rare, or wait at the end of the adult list.

Medical ethicists question the judge's intervention. But lawyer Stephen Harvey, who represents both families, fears that Javier and Sarah will die while the issue is reviewed.

http://seattletimes.com/html/health/2021131558_apuslungtransplantpennsylvania.html

_____________________________

Telling me to take Midol wont help your butthurt.
RIP, my demon-child 5-16-11
Duchess of Dissent 1
Dont judge me because I sin differently than you.
If you want it sugar coated, dont ask me what i think! It would violate TOS.

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RE: Transplants and politics - 6/6/2013 3:47:23 PM   
dcnovice


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quote:

I hope science will come up with a way to help folks live without a donor having to die.

Amen.

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it's never enough to keep up.

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