Fight over childrens' lung tranpslants

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Discussion Overview

The discussion centers around the recent legal rulings affecting lung transplant prioritization for children, particularly those under 12 years old. Participants explore the implications of these rulings on organ allocation systems, the historical context of lung transplant lists, and the potential outcomes for patients based on different allocation strategies.

Discussion Character

  • Debate/contested
  • Technical explanation
  • Conceptual clarification

Main Points Raised

  • Some participants note that a 10-year-old girl won an injunction to receive adult lung transplant priority, which has raised questions about fairness and efficacy in the allocation system.
  • Others discuss the historical context of lung transplant lists, which previously included separate lists for adults, 12-17 year-olds, and under 12s, based on matching organ size to recipient needs.
  • There is mention of a scoring system (LAS score) that prioritizes patients based on their health status rather than waiting time, which some argue could lead to better outcomes for the sickest patients.
  • Some participants express concern about the implications of using LAS scores across different age groups, questioning whether it might lead to discrimination against certain age categories.
  • Participants highlight the low availability of organs for under 12s, suggesting that the legal changes may not significantly improve outcomes for these patients.
  • There are discussions about the potential for resizing adult lungs for children, with mixed opinions on the effectiveness and historical context of such practices.

Areas of Agreement / Disagreement

Participants express differing views on the fairness and effectiveness of the current lung allocation system, with no consensus on whether the recent legal changes will improve outcomes for children needing transplants. The discussion remains unresolved regarding the best approach to organ allocation for different age groups.

Contextual Notes

Participants acknowledge limitations in the current system, including the low number of available organs for younger patients and the complexities involved in matching organ size and health status. The effectiveness of the LAS scoring system across different age groups remains a point of contention.

BobG
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A 10-year-old girl won an injunction that allowed her to receive the same priority as adults on the adult waiting list for available donated lungs.

Family of girl needing lung transplant 'excited' by ruling

One day later, a second child under 12 filed a lawsuit and also won.

Second child files suit for lung transplant, gets on list

I think the news coverage is a little thin.

In the old days, there were three lists: one for adults, one for 12-17 year olds, and one for under 12. The separate lists were because of the need to match the size of the donated lung to the recipient. Children's lungs don't work well for adults and adult lungs don't work well for children under 12.

All three lists were based on first come, first serve. You waited in line regardless of the severity of your disease. Maybe you got a lung in time - maybe you died while waiting.

There was also a chance a person could get a donor lung from a different list than their own. If an under 12 lung was available, but no under 12 recipient, the lung was offered to people on the 12-17 year old list, preferably to someone on the lower end age-wise. If there were an adult lung available, but no recipient, it could also be offered to someone on the 12-17 year old list, preferably someone on the older end. If there were no one over 12 to receive the lung, it could be offered to some on the under 12 list. Being a poor match, presumably only the sickest would go with that option. If there were no one under 18 to receive an under 12 lung, it would be offered to an adult. Once again, being a poor match, only the sickest would go that route.

Lungs from 12-17 year old donors with no recipient avaiable would go be offered to under 12 recipients first, then to adults if there were no one under 18 to receive the lung. With, of course, exceptions due to a 17-year-old probably being a better match for an adult than for a child under 6, etc.

The first come, first serve rule wasn't seen as being very efficient, since the sickest had a much more pressing need than those that could afford to wait for a lung. So they came up with a scoring system (an LAS score) with a person's position in line based on their LAS score rather than how long they had been on the list. That was a controversial move. People with high LAS scores, being the sickest, also had the lowest likelihood of a successful lung transplant, however the argument was that that was at least partially due to the fact that people near death were the most likely to accept bad matches (partial lobe transplants, mismatched size, etc). The belief was that if the sickest were higher on the list and getting good matches, their success rates would match the healthier patients.

The change was only made to one list because it seemed prudent to measure the results before making the change across the board. The procedures for the under 12 list and the 12-17 year old list remained unchanged.

In practice, success rates for patients with high LAS scores are better than they are on the first come, first serve method, but they still have significantly worse success rates for the first year than the patients with lower LAS scores. On the other hand, if they survive the first year, their survival rates do approach the survival rates of healthier patients - or perhaps it might be more accurate to say the healthier patients' survival rates approach the sickest patients' survival rates, since all lung transplant patients have bad (around 50%) five year survival rates. 10 year survival rates are very bad (around 30%). If you're to the point of getting a lung transplant, you're buying time instead of "curing" a person. Does lung allocation score maximize survival benefit from lung transplantation?

This raises all kinds of issues. Is using the LAS score a good enough system to implement across the board? Or should it be implemented with some modifications given that the one year survival rate is worse for patients with an LAS score over 60 and much worse for LAS scores over 80? And if it is implemented across the board, does that mean scrap the idea of trying to match the best size? More importantly to the judge deciding the case, is trying the experiment on just one age group discrimination against the other age groups? In fact, is using age as one of the criteria used in finding the best match discrimination?

I think its sad to see a little kid die because the probability of an appropriate lung being available is low. But if the ultimate goal is to save as many as possible, giving her an inappropriate lung when an appropriate donor is available is a bad idea - especially when she has an LAS of 78, putting her right on the border for the patients least likely to result in a successful transplant even with a well matched lung.

I think the judge made a mistake by interfering and changing a procedure he didn't really understand.
 
Last edited:
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Adults have priority over children or are there two different lists?
 
Greg, there are three different lists, an under 12 list, a 12-17 list, and an 18+ list. If an 11 year old dies and their lung is donated, the under 12 list gets priority over everyone from the 12-17 list, who get priority over everyone from the 18+ list.

The problem is that very few under 12 organs are donated, so if you're 11 years old, you have pretty much been SOL as far as getting a transplant. At least this is my understanding of the situation before these court cases
 
She had a lung transplant from an adult donor on the 12th.

(CNN) -- Sarah Murnaghan, a 10-year-old Pennsylvania girl with cystic fibrosis whose family fought to have young children prioritized for adult organs, received new lungs Wednesday, her family told CNN.

Her surgery took about six hours, and there were no complications resizing or transplanting the adult lungs, according to family spokeswoman Tracy Simon.

http://www.cnn.com/2013/06/12/health/pennsylvania-girl-transplant/index.html

This means the next patient on the adult list didn't get a transplant, at least yet.

Edit:

There were apparently some negative comments on her Facebook page.

http://fox43.com/2013/06/18/murnaghans-face-backlash-after-lung-transplant/#axzz2WdFn1HBt
 
Last edited by a moderator:
Greg Bernhardt said:
Adults have priority over children or are there two different lists?

What it really comes down to is the suitability of the donor organ for the patient needing the organ. The size is one of the things that have to be appropriate. Breaking the list into three different size groups is one way to streamline things.

It's possible that cutting adult lungs down to size is a good option for kids. Before the LAS system was put into place, there were some instances where a patient received a portion of two different lungs from living patients. Basically, it was a desparation measure with relatively poor results (but better results than the alternative).

With the LAS system in place, that procedure has become virtually unheard of. Eight years later, with almost no intervening case history, it's possible that the procedures have improved. I just wouldn't use the patient's doctor's endorsement as authoritative. If I were the patient's parent, I wouldn't be going to a doctor that didn't believe the effort would be worth it.
 

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