Transcriber: Chelsea Esterline Reviewer: Denise RQ
Good morning.
Three years ago, I was experiencing end stage renal disease,
or kidney failure.
I was taking several strong drugs.
I was on very restrictive diets and on kidney dialysis.
Three days a week, I would go to the dialysis center,
and I would be hooked up to 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 paying for my medical benefits,
and I really felt pretty lousy most of the time.
So my best treatment option would be to get a kidney transplant.
In 2010, I became eligible to receive a kidney from a deceased donor,
and I was placed on the national waiting list.
Even when you get on the list, most people still have to wait
an average of four to six years before a suitable donor is found.
Fortunately, I didn't have to wait that long.
When people found out about my situation,
several of them came forward and volunteered to be donors.
I was very humbled by their generosity and will be forever grateful
that they contacted the transplant center and agreed to be tested.
When donors are matched to kidney patients,
they are matched by age, body size, gender,
and by several blood factors known as antigens.
You don't have to be a perfect match to be a donor, but the better the match,
the more likely the transplant is to be a success.
Of the 14 people that 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 right here in this yearbook photo.
It was taken in 1985.
And the other guy in the center is our third roommate from freshman year,
Dave Lefkowitz, who many of you recognize as an art professor here at Carleton.
We had a willing donor, and we had a patient,
but there were still many obstacles that 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 be considerable expenses
associated with getting him here and his family here for the surgery.
The problem is that my insurance, and Medicare and other insurance policies
in this country do not cover those kinds of medical expenses.
There really needs to be a national dialogue as to why that is.
It should not cost the kidney donor anything to come and have the surgery.
Furthermore, I was not allowed to pay for those expenses myself.
I would have gladly paid any price to get Glen here as quickly as possible,
but any payment by me to him would have been seen as compensation
for the kidney donation, and that's illegal.
That's where the class of 1985 stepped in again.
(Laughter)
Our roommate Dave put together this graphic
of Stu's New Kidney - Glen style,
and put it on the website, sent an email to our classmates asking for donations.
And they came through with enough money to cover plane tickets, a rental car,
found places to stay for Glen and his family
while he was recovering from the surgery.
And in general, just gave a tremendous amount of support to us
through the whole process.
So we had the surgery in November of 2010, and it went very well.
Glen is doing just fine.
He does not now
and is not expected to in the future have any complications from the surgery.
I'm doing just fine too.
I still have to take anti-rejection drugs for the rest of my life,
but otherwise, my life is pretty much back to normal;
the way it was before I experienced the kidney failure.
So I really feel like the class of 1985 gave me my life back.
As I was preparing
to leave the dialysis center for the last time,
I thanked the staff and got ready to leave,
and I looked back
and saw the ten or so other people who were still connected to the machines.
While I was glad to know that things went well;
I would not be back.
But I was also disheartened to know
that they would not have the same opportunities that I did.
Many of them were patients that had multiple medical issues
and would not be eligible for a transplant,
but many of them were there
strictly because there were not enough organs available for transplants.
And in fact, the statistics on this are rather bleak.
Currently, there are over 117,000 people
on the transplant list awaiting a transplant.
And of those, over 95,000 need a kidney.
The reason for that is
we're able to keep kidney patients alive on dialysis for years or even decades
while they're waiting to find a suitable donor.
Last year, in 2012, there were
over 16,000 kidney transplants performed in the United States.
And 11,000 of those had donations from deceased donors,
and over 5,700 donations came from living donors.
I bring this up for a couple of reasons.
First, I was surprised when I saw this statistic
because of the transplant recipients that I've talked with,
most all of them received their kidneys from living donors.
And in fact, all of the kidney donors that I've talked to have also been living.
(Laughter)
But it also illustrates
that if we are to increase the number of organs available for donation,
we can count on some coming from altruistic living donors,
but the majority of those will have to come
from an increase in organs available 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 month and over 6,500 this year.,
And as I got to reading and thinking more about this after my transplant
I realized
there's something fairly simple that can be done to improve that.
We can switch from an opt-in system of 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 consent while you're living,
and you need to make those wishes known by either signing up with a registry
or by checking a box when 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 box on 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 donation in 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 yellow have an opt-in system.
What they found was that countries that are very similar
geographically and politically, and have similar cultures, religions,
have very different rates of organ donation.
For example, Germany is very low at about 12%,
while Austria's very high at over 99%.
Similarly, Denmark has 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 countries have opt-out systems and some have opt-in.
As you may have also guessed, the United States falls in line
with other opt-in countries with an organ donation rate of about 20%.
This paper is also often cited
because it reflects and shows the power of the default option.
The default option is what happens
when you make a decision and you do nothing.
Many people will choose the default option if they do not have
particularly strong feelings either way about the issue.
Who would this affect by 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 on the best available statistics,
but that can vary state by state, region by region, and study to study.
As we just saw with the Johnson and Goldstein example,
it depends a lot on how you ask the question.
So, if we then look further at those groups,
of those that would prefer to be organ donors,
approximately 20% have indicated their wishes and have signed up,
be it on a registry,
or by indicating on their driver's license.
Of those that do not want to be organ donors,
about 5% will make that same indication
that's based on the experience of several European countries.
But we need to look at the large majority in the middle,
and what would be the effect on them.
So, on the one hand, if we look at those who do not wish to be organ donors,
what's the risk we have if we make a mistake with them?
Well, we risk offending the relatives and the loved ones of the person
who's making the donation,
and we also would have the medical establishment
that is responsible for making those decisions
take a hit to their credibility.
On the other hand, if we make a mistake with 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 risk associated with the second group,
and that's a risk we live with all the time,
and a mistake that we make every day.
Some argue that just having the organs available for donation
would not necessarily lead to greater organ procurement,
and the reason cited for that
is that there're many steps that need to happen
between having a willing donor or a deceased donor,
and actually having the transplant operation.
So first of all, you need to have an organ procurement organization
that works with the family and the hospital,
and is ready to help make those decisions.
Then you need to have a surgical team in place
with experienced people and equipment who can successfully harvest the organs.
Next you have to have an organization that matches donors and recipients.
In this country that's the United Network for Organ Sharing,
and that works rather well.
Then you have to have effective transportation
to rapidly get the organ from where it is to where it's needed.
You need to have a transplant surgery center
with a ready transplant patient.
Many countries don't have this infrastructure set-up in place,
so many organs that would be available 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 States is among the leaders in the world
in organ procurement rates.
This is a chart that shows donor procurement rates
for different countries from the years 1992 to 2002.
The countries that have an opt-out system are listed at the top,
and the countries that have an opt-in system are listed at the bottom.
While generally the rates are higher for 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 leaders in the world for organ procurement rates.
While that is encouraging,
I still believe that if we switch to an opt-out system,
we could at least equal the rates that are seen
by Spain, Austria, and Belgium, and that would do a lot of good.
What we have is a demonstrated need for more organ transplants,
and we have a way that we could increase the 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-in to an opt-out system.
Just think of the people we 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)