Re: More UNOS policy issues

[Guest guest]

Although I agree that livers should go to the " sickest " patients first ...

this policy does NOT guarantee that. Someone with a " chronic " liver disease,

could be just as sick as someone with " acute " liver failure, but with the new

policy, it would go to someone with an acute disease before one with a

chronic. Is there anyway that we can voice our concerns about this? When

this proposal first came out, I called UNOS and talked to them about it.

They gave me percentages on the amount of patients that would die because of

this, and said that the percentages were very low. I told them that it

wasn't numbers they were talking about, it was human beings. I believe that

they should still go by the " points system " , but also allow chronic liver

disease patients to get to a status one, going by their points system.

Love,

[Guest guest]

Yes I think that the existing status 1 vs status 2A (for chronic patients

which include PSC) seems oddly unfair. By definition both have less than 7

days to live. Maybe they feel that the chronic patient can hang on another

day or two whereas the acute patient may have only hours to live.

The new rules don't really change anything for status 1's or 2A's, but the

2B's and 3's get ranked based on how sick they are, rather than how long

they have waited.

That sounds OK to me, although the exact definition of the ranking system is

subject to debate.

I'm still willing to write a letter on this to UNOS if there is an interest

from the group.

Thanks Roy T.

Re: More UNOS policy issues

> Although I agree that livers should go to the " sickest " patients first ...

> this policy does NOT guarantee that. Someone with a " chronic " liver

disease,

> could be just as sick as someone with " acute " liver failure, but with the

new

> policy, it would go to someone with an acute disease before one with a

> chronic. Is there anyway that we can voice our concerns about this? When

> this proposal first came out, I called UNOS and talked to them about it.

> They gave me percentages on the amount of patients that would die because

of

> this, and said that the percentages were very low. I told them that it

> wasn't numbers they were talking about, it was human beings. I believe

that

> they should still go by the " points system " , but also allow chronic liver

> disease patients to get to a status one, going by their points system.

> Love,

>

>

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[Guest guest]

I had always assumed that the reason for having the distinction of 1 vs.

2A was to account for the fact that the person with chronic disease had

already had a long time on the list and had theoretically had a chance

to get a liver while at a lower status. It seems like they're slowly

eroding the advantages we had in that area (time on the list) while

leaving the distinction between 1 and 2a in place.

It seems to me that the main problem this causes for someone in our

situation is that it forces us to wait until we're sicker (even though

we know we'll need a transplant eventually) and will probably have a

harder time surviving a transplant. It seems to me that this will lead

to higher failure rates for transplants. I can't help wondering if part

of the reason they penalize chronic patients is that a large percentage

of them have diseases with a stigma attached, such as alcoholic

cirrhosis or hepatitis.

athan

[Guest guest]

I haven't read the new policy paper, but one way in which the

current policy is biased in favor of chronic diseases like PSC

is that it gives credit for waiting time. Because PSC typically

has a slow progression, the PSC patient can endure longer - if

infection or cancer don't cancel out the wait - and get to the

head of the list.

The new policy may not include any measure of waiting time.

While waiting time provides no medical reason for a transplant,

as a society we tend to give some advantage to the first

claimant. I think it is unfair to take that advantage away

completely.

Tim

--- PSCMODERATOR1@... wrote:

>

> Although I agree that livers should go to the " sickest "

> patients first ...

> this policy does NOT guarantee that. Someone with a " chronic "

> liver disease,

> could be just as sick as someone with " acute " liver failure,

> but with the new

> policy, it would go to someone with an acute disease before

> one with a

> chronic. Is there anyway that we can voice our concerns about

> this? When

> this proposal first came out, I called UNOS and talked to them

> about it.

> They gave me percentages on the amount of patients that would

> die because of

> this, and said that the percentages were very low. I told

> them that it

> wasn't numbers they were talking about, it was human beings.

> I believe that

> they should still go by the " points system " , but also allow

> chronic liver

> disease patients to get to a status one, going by their points

> system.

> Love,

>

>

>

------------------------------------------------------------------------

> Britney? Limp Bizkit? ? Who will win the

> Grammys???????

> Guess the winners and you could win a FREE MP3 Player! from

> AWZ.com!

> Click Here!

> http://click./1/1769/4/_/24674/_/951067178/

>

> eGroups.com Home: /group//

> - Simplifying group communications

>

>

__________________________________________________

[Guest guest]

The fundamental problem in all of this is that there probably isn't a " fair "

answer to the question of who lives and who dies, which is what this comes

down to.

The only real solutions are more organ donors and technologies that prevent

the need for transplants.

Thanks Roy T.

Re: More UNOS policy issues

> I haven't read the new policy paper, but one way in which the

> current policy is biased in favor of chronic diseases like PSC

> is that it gives credit for waiting time. Because PSC typically

> has a slow progression, the PSC patient can endure longer - if

> infection or cancer don't cancel out the wait - and get to the

> head of the list.

>

> The new policy may not include any measure of waiting time.

> While waiting time provides no medical reason for a transplant,

> as a society we tend to give some advantage to the first

> claimant. I think it is unfair to take that advantage away

> completely.

>

> Tim

>

> --- PSCMODERATOR1@... wrote:

> >

> > Although I agree that livers should go to the " sickest "

> > patients first ...

> > this policy does NOT guarantee that. Someone with a " chronic "

> > liver disease,

> > could be just as sick as someone with " acute " liver failure,

> > but with the new

> > policy, it would go to someone with an acute disease before

> > one with a

> > chronic. Is there anyway that we can voice our concerns about

> > this? When

> > this proposal first came out, I called UNOS and talked to them

> > about it.

> > They gave me percentages on the amount of patients that would

> > die because of

> > this, and said that the percentages were very low. I told

> > them that it

> > wasn't numbers they were talking about, it was human beings.

> > I believe that

> > they should still go by the " points system " , but also allow

> > chronic liver

> > disease patients to get to a status one, going by their points

> > system.

> > Love,

> >

> >

> >

> ------------------------------------------------------------------------

> > Britney? Limp Bizkit? ? Who will win the

> > Grammys???????

> > Guess the winners and you could win a FREE MP3 Player! from

> > AWZ.com!

> > Click Here!

> > http://click./1/1769/4/_/24674/_/951067178/

> >

> > eGroups.com Home: /group//

> > - Simplifying group communications

> >

> >

> __________________________________________________

>

[Guest guest]

I have to say it again. Roy is right on target. I don't think the problem

is so much how we share but how we donate. We need to push organ donation

and add donation quota requirements to the organ sharing picture. If all

people could see the value of donating their organs upon death, we wouldn't

have such a sharing dilemma.

Re: More UNOS policy issues

>

>

> > I haven't read the new policy paper, but one way in which the

> > current policy is biased in favor of chronic diseases like PSC

> > is that it gives credit for waiting time. Because PSC typically

> > has a slow progression, the PSC patient can endure longer - if

> > infection or cancer don't cancel out the wait - and get to the

> > head of the list.

> >

> > The new policy may not include any measure of waiting time.

> > While waiting time provides no medical reason for a transplant,

> > as a society we tend to give some advantage to the first

> > claimant. I think it is unfair to take that advantage away

> > completely.

> >

> > Tim

> >

> > --- PSCMODERATOR1@... wrote:

> > >

> > > Although I agree that livers should go to the " sickest "

> > > patients first ...

> > > this policy does NOT guarantee that. Someone with a " chronic "

> > > liver disease,

> > > could be just as sick as someone with " acute " liver failure,

> > > but with the new

> > > policy, it would go to someone with an acute disease before

> > > one with a

> > > chronic. Is there anyway that we can voice our concerns about

> > > this? When

> > > this proposal first came out, I called UNOS and talked to them

> > > about it.

> > > They gave me percentages on the amount of patients that would

> > > die because of

> > > this, and said that the percentages were very low. I told

> > > them that it

> > > wasn't numbers they were talking about, it was human beings.

> > > I believe that

> > > they should still go by the " points system " , but also allow

> > > chronic liver

> > > disease patients to get to a status one, going by their points

> > > system.

> > > Love,

> > >

> > >

> > >

> > ------------------------------------------------------------------------

> > > Britney? Limp Bizkit? ? Who will win the

> > > Grammys???????

> > > Guess the winners and you could win a FREE MP3 Player! from

> > > AWZ.com!

> > > Click Here!

> > > http://click./1/1769/4/_/24674/_/951067178/

> > >

> > > eGroups.com Home: /group//

> > > - Simplifying group communications

> > >

> > >

> > __________________________________________________

> >

[Guest guest]

,

My father was talking to me yesterday, about an ad he had heard on the

radio. They were talking about having booths set up in a local mall, with

bumper stickers like " Don't take your organs to Heaven, Heaven knows we need

them here. " Then, if your car was spotted with having this bumper sticker on

it... you would win money. If I hear that ad, I will get in touch with the

people, and see about helping them out. Maybe we can set something like this

up in our own areas. I have seen that bumper sticker before, and think it's

great!

Love,

[Guest guest]

Roy Toutant wrote:

>

> The fundamental problem in all of this is that there probably isn't a " fair "

> answer to the question of who lives and who dies, which is what this comes

> down to.

I tend to agree. That's part of why I think the policy should be the

one that produces the highest survival rate, rather than coming up with

something that seems fair (which right now seems to be leaning toward

the side of making the system as incomprehensible as possible so people

feel they just have to accept the results). That would be the best

utilization of the resources we have. Then everyone could put their

efforts into finding ways to get more organs, or coming up with

alternatives.

athan