Private Procurement Company... I need some advice.

[richrichbr]

I'm glad I have found more people to talk to similar to myself. I am on a donor list through the mayo clinic and I'm a good ways down the list. Anyhow, just wanted to ask about a company called "Lifeline Procurement and Exchange". I was referred to them by a friend. Supposedly they are a fee based company that specializes in matching patients with donors. They are pricey but guaranty results. Does anyone have any thoughts or comments or advice on this? Thanks...

[lmunchkin]

Sorry, never heard of it!  But with the word "Procurement" gives me pause! Maybe someone else can better answer your question. Just hope it is legal.  lol

lmunchkin
 

[richrichbr]

Do they have a lot of these companies out there?

[jbeany]

Sounds fishy to me.  I just googled it and didn't even find a website. 

The last person we had on here claiming to be able to guarantee a transplant called himself an organ broker and was supposedly helping people get transplants overseas in 3rd world nations by paying the donors to donate.  It was a scam and he was arrested and convicted.  Transplant tourism, even when real, comes with a whole host of other risks.

If you have a willing donor who isn't a match, there are plenty of ways to get involved with a paired donor exchange that don't involve costly fees.  If you don't have a willing donor and are looking for an altruistic donor, there are established websites for that.  (livingdonors.com?  something like that.)  They do charge, but it's not horribly pricey.  It's not a guarantee, though; just an opportunity to get your story out there.

I'd proceed with caution.  There's always someone out there selling snake oil, and people hoping for a transplant tend to make easy targets.  Caveat Emptor.

[richrichbr]

Ok. I went ahead and talked to a rep with this "Lifeline Procurement and Exchange" company. My doc at Mayo had heard of them but didn't know a whole lot. I can tell you this: They are a very private company and seem legit. They charge a healthy fee but then connect you with pre-tested donor's who are registered with them already.  It's basically a patient/donor introduction thing. I've paid the fee (ouch) and I'm supposed to meet a potential donor Tuesday. Wish me luck! :-)

[Rerun]

So the donor must get money just like a woman who offers to carry a baby for someone.  I see nothing wrong with that, but I know lots of people who would.  Don't ask don't tell?  I don't know!  What was your fee? 

[richrichbr]

Actually, from what I understand, the donor is not compensated per say, but are covered for travel, medical expenses, and any lost wages/hardships as a result of the procedure and recoup time. Of course, I would be more than willing to do this anyway. The value of all this, of course, is being connected to these donors. As far as the fee... they offer several different packages ranging from $4995 and up depending on blood type (because the availability of donors decreases with with rarer blood type). I am AB+, my fee was $5500.

[ToddB0130]

Wow.  This is a thread I will watch with great interest.  I really hope it works out for you,  richrichbr  ...... I would be leery about paying a fee upfront for a service like that. (Did they give you a receipt ?  A 'contract' of some type ?  Was a commitment made as to when/how/etc ?  Considering buying or selling an organ is a 'crime' (as far as I knew),  I'm surprised it can be called 'legitimate',  but like I said ..... can't wait to here how this all turns out for you.  Keep us posted.

Rerun --- it's funny you mentioned 'don't ask, don't tell' ............when I went through my orientation for getting on the transplant list,  the doctor doing the presentation said EXACTLY THAT about their philosophy when he'd gotten to the slide that talked about coercion of family/friends and compensation  ..........made me wonder how 'deeply' they really go in asking questions about that kind of thing when discounting potential living donors .....

[richrichbr]

I thonk the way that get around the legalities of it all is that there really isnt compensation for the organ itself. It's a fee for the company to do the leg work of recruiting a donor, so to speak. They gave me a receipt and the agreement specifies that I'll be refunded half the fee if no donor is found within 6 months then another 25% percent refunded if no donor after a year. But if you have a fairly common blood type they claim you will have a matching donor within 90 days, and I believe it because they already have me preliminarily matched and it hasn't even been a week.

[ToddB0130]

Thanks again for keeping us updated !!  Looking forward to hearing more.  Another question -- what is the purpose of meeting with the donor exactly ?  Is it a requirement for some reason ?   Can they say they don't want to prefer to donate to you ?   Is it for you to potentially decline them as a donor ??   I would think the company you're paying is going to do all the 'legwork' to make sure anyone they've got as potential donors are qualified (healthy) candidates for the recipient and are themselves 'cleared' as donors (in terms of understanding and capacity to recognize everything (implications to their own health, etc) involved in the donor process.

[MooseMom]

My questions mirror Todd's.  What guarantee do you have that this "pre-approved donor" will actually be approved by YOUR tx center?  When you meet your donor, will s/he have documentation to prove that s/he has passed all tests?  What happens if your tx center insists upon more testing, and your donor fails these extra tests?

Good luck to you, and do please sure to keep us updated!  Thanks!

[cariad]

Actually, from what I understand, the donor is not compensated per say, but are covered for travel, medical expenses, and any lost wages/hardships as a result of the procedure and recoup time. Of course, I would be more than willing to do this anyway. The value of all this, of course, is being connected to these donors. As far as the fee... they offer several different packages ranging from $4995 and up depending on blood type (because the availability of donors decreases with with rarer blood type). I am AB+, my fee was $5500.

Thanks for sharing this, rich. I have never heard of this sort of service before, just online companies where you can join forums, some charge, at least one doesn't.

I do need to point out that "the availability of donors decreases with rarer blood type" is completely false. As an AB+, you are very lucky and should be the easiest to match. You are the "universal recipient" and can accept an organ from a person of any blood type so long as your crossmatch is negative. If they are telling you that you are the most difficult to match due to your rare blood type, there are only two possibilities: they do not know what they are doing or they are lying. I have my suspicions as to which.

Rerun --- it's funny you mentioned 'don't ask, don't tell' ............when I went through my orientation for getting on the transplant list,  the doctor doing the presentation said EXACTLY THAT about their philosophy when he'd gotten to the slide that talked about coercion of family/friends and compensation  ..........made me wonder how 'deeply' they really go in asking questions about that kind of thing when discounting potential living donors .....

Some hospitals will impose rules and investigate, but many do not care where you get your live donor so long as they can get their enormous medicare compensation for performing the surgery. If they did not arrange it, they are not the ones who will face prison if the arrangement is brought to light. I find it beyond depressing that we have doctors in this country who think these laws are some kind of joke. I respect the feelings of the people in renal failure who want to see changes to these laws, but the doctors are doing this for money. Many transplant centers do not see a dime for all of the transplant workup that they do, they must perform the surgery to get the benefit of meeting with a patient. (Cedars is one of these, and if they do certain pre-transplant procedures for you, they have the cheek to insist that you sign a contract that you will get your transplant done through them. Utterly creepy.)

[ToddB0130]

I agree, cariad .... I think the whole 'buy an organ' thing is 'creepy' and 'wrong' ........ I totally respect people who choose to do it, but for someone to choose (not the right word, I know) to do it for money wigs me out.  I tend to wonder about that kind of choice for the donor down the road ("Hey, I should've asked for $ 75K instead of $ 50K .....").  Then again, Rerun makes a valid comparison in a way about someone choosing to carry a child for someone else (and I guess maybe even sperm donation, etc).  What do I know

[richrichbr]

Thank you all so much for your insight. It really helps to hear everyone's comments and suggestions. Just to clarify, my blood type is not rare at all which is why my fee was on the low side. If I were a rare blood type my fee would have been much higher. I was merely explaining that their fee rises with the rarer blood type because of the availability of donors for the rarer blood type. I am very fortunate. It is my request that I meet the donor and this particular donor has already passed Lifeline Procurement's initial testing to be matched to client patients. All I know for now is that it is a 30 year-old male. I will meet him via phone call. Upon that, we will take the next step which is to forward testing documentation to Mayo and go from there. Lifeline Procurement actually will do that. They have a staff physician which acts as a liaison with the clinics/tx centers/etc.

So far I'm enlightened, impressed, and very hopeful.

[cariad]

Then I don't understand. AB is the rarest blood type. Do you mean rare antigens?

[okarol]

In terms of what donors an AB blood type can receive organs from - they can get them from all other blood types, which makes them easier to match.

[richrichbr]

Yes, I understand what you mean... I am AB+ which is why I paid a higher fee than the $4995. I paid $5500. If I were AB- it would have been a bit higher still. I think the max fee is $6200.

[okarol]

Actually I think you'd pay the least amount as you're able to get any blood type kidney, as long as it's an antigen match.
Blood type O can only receive from O donors which makes it more difficult to find a donor.
Also, just FYI, the + and - do not matter when it comes to organ transplant, only for blood transfusions.

[cariad]

I still do not understand. You do have the rarest blood type (other than AB-) but you are saying that you paid more for the easiest to match. Positive and negative does not really matter in blood matching. This is really raising red flags for me, they do not seem to be able to explain their fee structure.

[cariad]

Sorry, Karol. I just repeated what you said....

[melcoo]

I have never heard of this company, however I would certainly be interested in meeting with them and meeting with some of their clients. Their fee sounds very reasonable. When you are in a desperate situation, investigating all options is imperative. Certain individuals are on a mission from God to make sure that transplant organs are not available. One woman has devoted her life to this pursuit. Best of luck with your search.

[ToddB0130]

melcoo's comment struck me with another thing for you to consider ........... in addition to talking to your potential donor.  Can you ask the organization if they are willing to connect you with a client (or clients) who have FULLY gone through their process (i.e.,  successfully transplanted) ......... as I've gone through this journey,  I've always found it helpful to ask my doctors if they'd hook me up with someone I can talk to, ask questions of, etc.  I've done this with someone locally who has been on dialysis awhile, etc.   I think it could be helpful to you to talk to someone who has paid the fee AND been through the transplant.  They'd be able to answer questions about difficulties with the process, dealing with their transplant center, etc, etc.

[richrichbr]

Todd, in fact I did speak to two post transplant clients. One lives in Amherst, OH and was successfully transplanted in 2008. The other lives in Jacksonville, FL and recently had a transplant merely three months ago. Both had good things to say. The lady in Jacksonville is having some rejection issues but that was due to some medication problems she claims. I'm trying my best to cover all bases.

[lmunchkin]

If you feel good about this, then go for it!  My concern is for you, Richrich!  Wishing you a successful transplant for 2012.

God Bless,
lmunchkin
 

[richrichbr]

Thank you so much.