I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Sunny on April 21, 2010, 03:20:59 PM

Title: UNOS Monopoly
Post by: Sunny on April 21, 2010, 03:20:59 PM
Has anyone ever read Robert Hickey's Web page Innovative Strategies?
http://www.innovativestrategies.us/
For many of you who already know this, it's news to me. He apparently was the 1st kidney transplant as a result of being matched from an on line matching site. He alleges UNOS is a government run monopoly trying to hold back any innovative methods for obtaining living donors because other strategies cut into UNOS profits. He also points out UNOS is poorly run and conducts unfair practices creating needless long lines for kidney transplants. What an eye opener this cite is. Allegedly UNOS is trying to get their tallons into any and all transplants, including living donors.
Title: Re: UNOS Monopoly
Post by: MooseMom on April 21, 2010, 05:35:45 PM
By what I understand, UNOS is not a "government monopoly", rather, it is a charity that was awarded a federal contract to operate OPTN.  I would be very interested to know exactly what kind of "innovative methods" he has in mind for obtaining living donors.  He makes some interesting claims validated by an unnamed source and then turns right around and says he can't prove it.

Instead of whingeing about UNOS, I would much prefer Mr. Hickey to push a "presumed consent" law here in the US like he says they do in Mexico.  If this results in so many cadaveric kidneys becoming available that they have to throw some away, then let's get presumed consent here.  If we have more organs available, the waiting list is reduced, more people can get their transplants and who cares about UNOS making profits?  Getting presumed consent something we could all take up with our congresspeople.
Title: Re: UNOS Monopoly
Post by: okarol on April 21, 2010, 08:06:34 PM
Sunny, Not sure where Innovative Strategies gets their info, but some of it seems farfetched to me. It's president is Bob Hickey, who was the first patient to receive a kidney coordinated by MatchingDonors.com - and you may recall it was controversial as his donor Rob Smitty was rumored to have been paid a large sum under the table for his kidney by Hickey, which they both emphatically denied. http://www.usatoday.com/news/health/2004-10-25-organ-usat_x.htm


MooseMom, as far as presumed consent is concerned, it would not make a dent in the current shortage. Every year about 11,000 people die in the US under the unique circumstances rendering them brain dead, and out of those only half currently go on to be donors (for various reasons.) But even if all of them were viable donors, it isn't enough to meet the shortage. There are 89,000 patients on "the list" for a kidney and that number grows every day.
Title: Re: UNOS Monopoly
Post by: Rerun on April 21, 2010, 08:34:19 PM
Money is the bottomline for every medical process!  Come on! 

Sutter Transplant was not going to evaluate me for a kidney because my long term plans were to move back to Washington State.  Medicare pays on the otherside of a transplant.  They would not see the "MONEY" so they were not going to list me.  I threw a FIT and they did finally list me but treated me poorly the whole time.  Then I moved to Spokane and they were giving me the run around too so I decided not to be listed.  Something is very wrong with they way things are run.  25 years ago it was so much different.  They were excited about saving lives and getting people a new kidney and back to life.

The first transplant evaluation question is "can you pay for this" second question is "how will you pay for the drugs" (Maybe that has been fixed with the new health plan?)
Title: Re: UNOS Monopoly
Post by: okarol on April 21, 2010, 08:56:44 PM
According to my husband, who is an economist, UNOS is, in fact, a monopoly.

In economics, a monopoly (from Greek monos / μονος (alone or single) + polein / πωλειν (to sell)) exists when a specific individual or an enterprise has sufficient control over a particular product or service to determine significantly the terms on which other individuals shall have access to it. Monopolies are thus characterized by a lack of economic competition for the good or service that they provide and a lack of viable substitute goods. The verb "monopolize" refers to the process by which a firm gains persistently greater market share than what is expected under perfect competition.
Title: Re: UNOS Monopoly
Post by: Rerun on April 22, 2010, 06:50:33 AM
According to my husband, who is an economist, UNOS is, in fact, a monopoly.

In economics, a monopoly (from Greek monos / μονος (alone or single) + polein / πωλειν (to sell)) exists when a specific individual or an enterprise has sufficient control over a particular product or service to determine significantly the terms on which other individuals shall have access to it. Monopolies are thus characterized by a lack of economic competition for the good or service that they provide and a lack of viable substitute goods. The verb "monopolize" refers to the process by which a firm gains persistently greater market share than what is expected under perfect competition.

I love your husband?     :-*
Title: Re: UNOS Monopoly
Post by: MooseMom on April 22, 2010, 07:59:28 AM
Okarol, I realize that implementing presumed consent may not solve the problem entirely, especially as our population ages and gets fatter and more renally challenged, but that's not a good enough reason NOT to implement it.

OK, UNOS is a monopoly.  But are you truly suggesting that kidneys/transplantable organs should be offered via market forces because if that is what you are saying, then we will have to completely rethink the moral hazards.  It begs the question of whether we want one entity to collate information or if we want to split that ability among competing companies.  If we do that, then we might find ourselves in the position of not knowing which company has organs listed in its particular database, and there are no guarantees that company A will share this business guided information with company B.  If you don't like the idea of UNOS being a monopoly, how do you propose to change the system?  How will you ensure that everyone has access to all available organs?

Do you trust private enterprises, whose raison d'etre is profit, to enter into the realm of guarding access to human organs?  This is the center of the whole health care debate.  Who makes money off us sick people, and who controls our access to a normal life?  Of course it is all about money.  This is America and this is how things are done here.
Title: Re: UNOS Monopoly
Post by: Rerun on April 22, 2010, 08:18:13 AM
I can tell you from experience of trying to convince Karol that selling organs would be a good option.... that she is NOT for the sale of organs.  But, I should let her speak for herself.   :rofl;

I would love to see our country move to presumed conscent and I've said that for years, but it doesn't look like that will ever happen. (btw, It is Spain that has it)  But, the donor should get some compensation.  There was a young girl that died in a car accident here about a year ago.  She donated to 7 people.  Saved 7 lives and the next day her family was out on the street trying to collect enough money for her funeral.  WTF?  Can't our society give these cadavric donors a decent burial?  Or for living donors maybe a tax break?  Good GRIEF Hosanna!

Presumed Concent would be optimal!    :thumbup;
Title: Re: UNOS Monopoly
Post by: MooseMom on April 22, 2010, 09:29:55 AM
Presumed consent just seems like a logical step.  I don't really understand the argument against it unless you go down the "I don't want to have to do anything to get myself OFF the donor list", which is the epitome of laziness.  Instead of having to check a box on your driver's license if you want to be a donor, check it if you DON'T want to be a donor.

As for the young girl's family you mentioned, that just shouldn't happen in America.  I thought we were better than that.
Title: Re: UNOS Monopoly
Post by: Rerun on April 22, 2010, 01:40:53 PM
Your driver's license is not a legal document when it comes to organ donation.  It is an indication of your wishes, but it comes down to asking the family and if one person has a problem with it they won't do it.  So, when I was a speaker for this transplant organization they told us to say "talk to your families now so they know your wishes and they won't have to make the decision during a tragedy."

So, I see presumed conscent as a deal where if the donor can be harvested (bad word) they just do it unless the family says "hey, if you are thinking about taking a kidney..... well don't).  On second thought that would go over like a lead balloon in this country.  So, maybe have the transplant coordinator tell them "now he/she is presumed a donor unless you have a problem with that".  And maybe sound a little condescending like if they have a problem with that they are bad.  Like they make you feel for taking a styrofoam cup (it is bad for the earth)

Title: Re: UNOS Monopoly
Post by: MooseMom on April 22, 2010, 01:50:58 PM

So, I see presumed conscent as a deal where if the donor can be harvested (bad word) they just do it unless the family says "hey, if you are thinking about taking a kidney..... well don't).  On second thought that would go over like a lead balloon in this country.

Yes, I agree with this assessment of "presumed consent", and I also agree that this would probably go over like that lead balloon...the question is why?  We're supposed to be so "pro-life" in this country, but I guess that's only if you have yet to be born.  If you're fighting for your life, then to hell with you, I guess. :stressed;
Title: Re: UNOS Monopoly
Post by: Sunny on April 22, 2010, 03:23:42 PM
I am all for presumed donation, although it still wouldn't be enough to take get rid of the long waiting list on UNOS.
I had my driver's license renewed in California this month. They could at least be required to ask the question,"Do you want to be an organ donor?"
They don't. I had to request to be listed as an organ donor. I sat there waiting my turn for 1 hour and not one person asked to be an organ donor when getting their driver's license. Please, at least require the DMV to ask. I think I would be against having UNOS also in charge of living donation listings, which they are trying to do under the guise of doing us all a favor in matching people. I also agree that deceased donor's families ought to be compensated in some way, such as funeral and medical bills. Apparently UNOS charges for deceased donor organs in some way. I don't know how to explain that or if I'm mistaken.
Title: Re: UNOS Monopoly
Post by: Merrybe on January 28, 2011, 04:58:16 PM
I did meet Bob Hickey in person, and he is a truthful man.   UNOS opposed many innovations in living altruistic donation, while having a large stake in the profits associated with transplant of cadaveric organs.  Now six years after Bob's transplant, UNOS is finally beginning to embrace living altruistic kidney donation by informed donors, only after thousands have died needlessly.

Rerun was correct, the transplant centers want to know if you can pay for the tx, and the meds.  They discriminate against people who don't have a support system at home, and won't offer in home support.  It is very sad, because they are excellent at what they do (the surgeons, the nephrologists, the hospital teams), but really bad at other aspects. 
Title: Re: UNOS Monopoly
Post by: okarol on January 28, 2011, 06:58:28 PM
Recent data, if you're interested:
Current U.S. Waiting List based on OPTN data as of January 21, 2011
There are now 110,055 people wait listed for organ transplants. Of those, 87,696 need a kidney.

from http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp