Title : Organ Procurement And Transplantation Network
link : Organ Procurement And Transplantation Network
Organ Procurement And Transplantation Network
good morning. three years ago, i was experiencingend stage renal disease, or kidney failure. i was taking several strong drugs. i was on very restrictive dietsand on kidney dialysis.
Organ Procurement And Transplantation Network, three days a week,i would go to the dialysis center, and i would be hooked upto a machine that pumped blood from a very large catheter in my chest,filtered it, and pumped it back in again. the whole process took a lot of time,and it was exhausting.
i had to cut back my work to part time, so my company stopped payingfor my medical benefits, and i really felt pretty lousymost of the time. so my best treatment optionwould be to get a kidney transplant. in 2010, i became eligible to receivea kidney from a deceased donor, and i was placedon the national waiting list. even when you get on the list,most people still have to wait an average of four to six yearsbefore a suitable donor is found. fortunately, i didn't haveto wait that long.
when people found out about my situation, several of them came forwardand volunteered to be donors. i was very humbled by their generosityand will be forever grateful that they contacted the transplant centerand agreed to be tested. when donors are matchedto kidney patients, they are matchedby age, body size, gender, and by several blood factorsknown as antigens. you don't have to be a perfect matchto be a donor, but the better the match, the more likely the transplant isto be a success.
of the 14 peoplethat volunteered to be donors for me, the best match turned out to be... if i can get my slide up. there we are. ...my freshman roommate,named glen carleton. (laughter) no relation to william carleton,who's the namesake of the college. but glen is on the righthere in this yearbook photo. it was taken in 1985.
and the other guy in the centeris our third roommate from freshman year, dave lefkowitz, who many of you recognizeas an art professor here at carleton. we had a willing donor,and we had a patient, but there were still many obstaclesthat we had to overcome before surgery was possible. in particular, glen lives in new jersey,and i live here in minnesota; and there were going to beconsiderable expenses associated with getting him hereand his family here for the surgery. the problem is that my insurance,and medicare and other insurance policies
in this country do not coverthose kinds of medical expenses. there really needs to bea national dialogue as to why that is. it should not cost the kidney donoranything to come and have the surgery. furthermore, i was not allowedto pay for those expenses myself. i would have gladly paid any priceto get glen here as quickly as possible, but any payment by me to himwould have been seen as compensation for the kidney donation,and that's illegal. that's where the class of 1985stepped in again. our roommate daveput together this graphic
of stu's new kidney - glen style, and put it on the website, sent an emailto our classmates asking for donations. and they came through with enough moneyto cover plane tickets, a rental car, found places to stayfor glen and his family while he was recovering from the surgery. and in general, just gavea tremendous amount of support to us through the whole process. so we had the surgery in novemberof 2010, and it went very well. glen is doing just fine.
he does not now and is not expected to in the futurehave any complications from the surgery. i'm doing just fine too. i still have to take anti-rejection drugsfor the rest of my life, but otherwise, my lifeis pretty much back to normal; the way it was before i experiencedthe kidney failure. so i really feel like the class of 1985gave me my life back. as i was preparing to leave the dialysis centerfor the last time,
i thanked the staffand got ready to leave, and i looked back and saw the ten or so other peoplewho were still connected to the machines. while i was glad to knowthat things went well; i would not be back. but i was also disheartened to know that they would not havethe same opportunities that i did. many of them were patientsthat had multiple medical issues and would not be eligiblefor a transplant,
but many of them were there strictly because there were notenough organs available for transplants. and in fact, the statistics on thisare rather bleak. currently, there are over 117,000 people on the transplant listawaiting a transplant. and of those, over 95,000 need a kidney. the reason for that is we're able to keep kidney patients aliveon dialysis for years or even decades while they're waitingto find a suitable donor.
last year, in 2012, there were over 16,000 kidney transplantsperformed in the united states. and 11,000 of those had donationsfrom deceased donors, and over 5,700 donationscame from living donors. i bring this up for a couple of reasons. first, i was surprisedwhen i saw this statistic because of the transplant recipientsthat i've talked with, most all of them received their kidneysfrom living donors. and in fact, all of the kidney donorsthat i've talked to have also been living.
but it also illustrates that if we are to increase the numberof organs available for donation, we can count on some comingfrom altruistic living donors, but the majority of thosewill have to come from an increase in organsavailable from deceased donors. in fact, 18 people are going to die waiting for a transplant, every day,off of the waiting list. that's over 540 this monthand over 6,500 this year., and as i got to reading and thinkingmore about this after my transplant
i realized there's something fairly simplethat can be done to improve that. we can switch from an opt-in systemof organ donation to an opt-out system. what does that mean? well, in this country,we have an opt-in system, where, in order to be an organ donor, you need to give your consentwhile you're living, and you need to make those wishes knownby either signing up with a registry or by checking a boxwhen you renew your driver's license.
in an opt-out system, you are presumed to give your consent unless you register with an organ registry or if you check the boxon your driver's license. the effect of this can be rather profound. here's an often cited chart from a paper by johnson and goldstein. it shows the different rates of organ donationin various european countries.
as you may have guessed,the countries on the right, in blue, have an opt-out system of organ donation, and the countries in yellowhave an opt-in system. what they found wasthat countries that are very similar geographically and politically,and have similar cultures, religions, have very different ratesof organ donation. for example, germanyis very low at about 12%, while austria's very high at over 99%. similarly, denmarkhas a very low level of organ donation,
while sweden's is very high. as you may have guessed,the only reason for this is because some of these countrieshave opt-out systems and some have opt-in. as you may have also guessed,the united states falls in line with other opt-in countrieswith an organ donation rate of about 20%. this paper is also often cited because it reflects and showsthe power of the default option. the default option is what happens when you make a decisionand you do nothing.
many people will choosethe default option if they do not have particularly strong feelingseither way about the issue. who would this affectby switching to an opt-out system? well, if you look at 100%of the population of the united states, you find that approximately 70%of the population would prefer to be organ donors when they die, and about 30% prefer not to be. that is based onthe best available statistics, but that can vary state by state,region by region, and study to study.
as we just saw with the johnsonand goldstein example, it depends a loton how you ask the question. so, if we then look furtherat those groups, of those that would preferto be organ donors, approximately 20% have indicatedtheir wishes and have signed up, be it on a registry, or by indicatingon their driver's license. of those that do not wantto be organ donors, about 5% will make that same indication
that's based on the experienceof several european countries. but we need to lookat the large majority in the middle, and what would be the effect on them. so, on the one hand, if we look at thosewho do not wish to be organ donors, what's the risk we haveif we make a mistake with them? well, we risk offending the relativesand the loved ones of the person who's making the donation, and we also would havethe medical establishment that is responsiblefor making those decisions
take a hit to their credibility. on the other hand, if we make a mistakewith those who want to be organ donors, but we do not harvest their organs, we run the risk that three to four,as many as eight people, are going to die. now, for me personally,the risk associated with that first group is far outweighed by the riskassociated with the second group, and that's a riskwe live with all the time, and a mistake that we make every day. some argue that just havingthe organs available for donation
would not necessarilylead to greater organ procurement, and the reason cited for that is that there're many stepsthat need to happen between having a willing donoror a deceased donor, and actually havingthe transplant operation. so first of all, you need to havean organ procurement organization that works with the familyand the hospital, and is ready to help make those decisions. then you need to havea surgical team in place
with experienced people and equipmentwho can successfully harvest the organs. next you have to have an organizationthat matches donors and recipients. in this country that'sthe united network for organ sharing, and that works rather well. then you have to haveeffective transportation to rapidly get the organfrom where it is to where it's needed. you need to havea transplant surgery center with a ready transplant patient. many countries don't havethis infrastructure set-up in place,
so many organs that would beavailable for transplant go unused. but the good news is that in this country, we have that infrastructure in place,and it's working just fine. in fact, the united statesis among the leaders in the world in organ procurement rates. this is a chart that showsdonor procurement rates for different countriesfrom the years 1992 to 2002. the countries that havean opt-out system are listed at the top, and the countries that havean opt-in system are listed at the bottom.
while generally the rates are higherfor those that have an opt-out system, we still see that the united states - excuse me there - falls in line with other countries that have an opt-in system, but there's still among the leadersin the world for organ procurement rates. while that is encouraging, i still believe that if we switchto an opt-out system, we could at least equalthe rates that are seen
by spain, austria, and belgium,and that would do a lot of good. what we have is a demonstrated needfor more organ transplants, and we have a way that we could increasethe number of organ procurements. eighteen people are going to die today,and over 6,000 this year while waiting for an organ transplant. think of the lives that we could save by switching from an opt-into an opt-out system. just think of the peoplewe could take off the waiting list and out of the dialysis centers.
think of the people who could,like me, get their lives back. thank you. (applause)
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