Bury the Bentley!

Organ donation and transplant rates are different in every country, and each country has its own set of challenges when it comes to problem solving for the unmet need for more organs.  There isn’t 1 country that has figured out the right combination of legal and ethical framework to create a self sustaining organ donation program that provides organs for their people as they become needed.  There are, however, some really effective policies and practices in place worth considering if we want to become a world leader in transplant and organ donation.

This blog post goes back and forth talking about living donation AND deceased donation.  As a reminder, deceased donation is when you agree to donate your organs AFTER death.  You can sign up to do that here, if you haven’t already.  LIVING donation is when you donate while you are still alive (what I am doing).  You can only do that with certain organs, like your kidney and liver.

Here are our world leaders, ranked as of 2015 for organ donation.  This combines living and deceased donors.

Screen Shot 2016-09-21 at 4.59.40 PM.png

Here are the top performing countries in 2015 for Living Kidney Donation.  This excludes deceased donors, and liver donors both alive and deceased.

Screen Shot 2016-09-21 at 5.04.12 PM.png

So what are they doing different than we are, and what can we learn from them?

Spanish ICU

95% of all deceased donations in Spain come from brain dead donors.  This implies that most potential deceased organ donors are cared for in an ICU.  ICU health care professionals include the conversation of organ donation in their end of life care more effectively than in other countries.

“If organ donation is not considered when people die under specific circumstances, potential donors will be missed.  The person fundamentally most capable of influencing the process will therefore be a clinician, primarily located in the ICU, who is able to establish an appropriate relationship with those working on the unit, promoting the idea of organ donation as a part of end-of-life care.”

Presumed Consent and an Educated Public

Presumed consent, in theory, is a phenomenal concept that increases the number of organ donors in many countries.  It means that your government assumes you are an organ donor unless you opt out, and make a point to add yourself to a list of people who do not consent to their organs being donated.  Most of Europe uses a presumed consent model to determine who is an organ donor.  In the United States, it’s the opposite.  You are assumed NOT to be an organ donor unless you opt in and sign up to be an organ donor.

The great thing about this concept is that it captures those who are indifferent or complacent, and puts them in the YES category rather than the NO category. In the USA, the UK, and many other countries, there is a major disparity between the number of people who say that they believe in organ donation vs the number of people actually registered as an organ donor.  Why?  It takes an extra step, and it’s not important or something you think about doing until someone you know needs an organ.  Maybe it’s laziness.

There is a surprising drawback to presumed consent though!  The rate of live organ donations is lower in countries with opt-out systems.  What keeps well-intentioned people from opting in is something that academics, doctors, and organ-donation activists are trying to figure out.  There is a great article in the Atlantic if you are interested in learning more about the opt-in vs opt-out strategies.  Opt out has backfired, it actually has backfired in California recently, but if the public is educated it is proven to work in favor of producing more organ donors.

Join the Club

Israel didn’t make it onto the lists above, but they have employed a strategy that makes a lot of sense to me as someone who appreciates social order.  In Israel, if you are an organ donor, you get priority on the organ waiting list if you are signed up as an organ donor.  Those who have agreed to give their organs, get an organ before somebody who has not signed up to be a donor.  Those who opt in are rewarded, and those who do not opt in have to wait behind those who opted in.  This policy was nicknamed “dont give, don’t get.” Organ donation in Israel increased after this policy went into play in 2008.  It’s something to think about if you aren’t an organ donor right now!  If you one day need an organ, or your child or spouse needs one, you will want to draw from a system that you currently do not support.  Is that fair?

There have been some private organizations that have taken this concept and tried to apply it in countries that do not use this reward system.  There was one in the US called Lifeshareres.  Basically, you sign up to that group, and as a card carrying member, you are promising other members of the group that in the event you die, you promise that THEY get your organs first.  Vice versa- if you have joined the group and NEED an organ, the system is set up so that you would get a directed donation from someone in this group in the event that they die.  The website for this group was taken down in the past year, and despite the thousands of people signed up, it never actually worked out for anyone giving or receiving organs within the group.

Incentives

Under the National Organ Transplant Act of 1984, paying somebody for organ donation is illegal in the United States.  In the 90’s Iran totally eliminated their kidney wait list by making the sale of organs legal.  This is a really interesting topic that starts an important conversation about the organ trade, and the black market that exploits the poor in many countries.  I am not going to argue the moral implications of this topic, but think it’s a great example of how incentives motivate people to do something as extreme as selling an organ.

Nineteen states currently provide tax incentives for organ donation.  Utah covers up to $10,000 of unreimbursed expenses (travel, lodging, lost wages, and medical expenses) associated with organ or tissue donation.  Four states provide tax credits to employers for wages paid to employees on leave for organ donation, and thirteen states have a tax deduction for up to $10,000 of unreimbursed costs.  There is not a federal law that requires an employer to give special time off for organ donors in the US, however many states do have special laws in place to protect their donors.  It is a great start, but does not compare to standards in other countries where donors are given greater financial incentive, and have fewer worries about the financial implications of donating due to the laws in place to protect them.

Heroin and Drug Overdoses

Sadly, one thing that is currently helping out the organ waitlist in the US is our heroin epidemic.  Right now, 1 in 11 organ donors is a drug-overdose victim.  With the epidemic growing, we can expect that these numbers will grow in favor of more people getting organs as a result of more people dying of a drug overdose.

Screen Shot 2016-10-12 at 7.25.07 AM.png

A Great Marketing Campaign

While I am not into football, I love a good Superbowl commercial, and have a huge appreciation for marketing stunts that WORK!  There have been several in the past few years related to organ donation, and they have done their job in getting more people to sign up to be donors.

Leo Burnett was behind this stunt in Brazil.  Not only did it bring the topic of organ donation into the media, but it resulted in thousands of people signing up to be organ donors in Brazil.  Way to go Brazil!

We can do a better job that we are doing.  There is a lot of work to do here, and we have the advantage of seeing what does and doesn’t work in other countries!  95% of Americans are in favor of being a donor but only 52% are registered.  So a simple call to action for YOU today.  If you believe in organ donation, make sure that you make that known.  Tell your loved ones, get on the organ donor registry, and be 1 less person in our country who wastes their organs because they didn’t take the time to register!

RESOURCES

Top 5 Statistics

http://bja.oxfordjournals.org/content/108/suppl_1/i48.long

How Spain Became the World Leader in Organ Donation

Opt In Vs Opt Out Organ Donation

Transplant In Europe

Why Don’t More People Want to Donate Their Organs?

Wikipedia

The Heroin Epidermic

Donate Life Statistics

 

Flying Free

By Guest Blogger: Dean Rush

During the lifetime of every individual on earth, there comes a time to make a decision about life. Some determine that they are in this race for themselves and chose to remain isolated from the world.  Live and let live is a motto that allows people to justify a secure lifestyle. That philosophy works until their sphere of existence has a need. The need may arise when they require a new kidney or liver after cancer is discovered in their body. The awakening occurs when that discovery leads to a need to receive a new organ in order to continue living. Suddenly there is an awakening that there was also an opportunity for them to share life with others. It may be too late for some to give but we have an opportunity to make the gift of life now.

2 Corinthians 9:6 is very explicit.  “Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously.  Each person should give what they have decided in their heart to give….. for God loves a cheerful giver. “

Some cannot give money but they can give life and continue to live. If you would like to step outside your comfort zone and truly share your life with others, check out Transplant Village.

About Dean Rush

Dean Rush is a Pastor and Executive Director of Faith Breakthroughs at Kingsland Baptist Church, Katy, Texas.

Raised on an Indiana farm, Rush graduated from DePauw University and joined the U.S. Air Force. He flew Cessna 0-2s as a forward air controller in Vietnam, earning a Silver Star, Distinguished Flying Cross and 10 air medals.

After 11 years in uniform, Rush left and co-founded an intra-Texas cargo carrier and then started Lockhart Aviation. Later he joined AMR Combs.

deanrush-0011
Flying Free is an autobiographical sketch of experiences that can be used to develop practical methods for overcoming those unexpected emergencies in life. The book provides relevant actions to defeat those challenges which seem to confront everyone.

Flying Free is a compilation of experiences and ideas to help reach goals we didn’t dream possible. We can soar to new heights when God is our wing man. Come fly with with us to reach God’s purpose for your life.

Let’s examine some ways you can achieve free flight even when heavily burdened. IT IS tough to takeoff and fly when we are overburdened with problems.

If we are going to achieve free flight, climb, and soar, we must plan to extract ourselves from those historic problems that prevent us from flying to God’s purpose for our lives.

 

< 200 People/Year

Here are some staggering statistics:

Screen Shot 2017-02-09 at 6.23.58 AM.png

When Rob and I started our business in 2008, our goal (besides making rent), was to double our sales month after month.  We had a good track record of doing that in the first 2 years- it’s really not that hard when you are working with really small numbers.  That’s how I look at these numbers.  It shouldn’t be that hard to dramatically improve these numbers!

There are 2 numbers in this table that I really think need improvement right away.  There are less than 6,000 living donor kidney transplants each year, and of those transplant, less than 200 are non-directed kidney donors (what I am doing, not knowing the recipient beforehand).

What do we need to do to make living organ donation “normal” and desirable to people who want to make a difference in somebody’s life?  How do we change the way people think and behave around this topic, so that there is no longer an “organ shortage,” and so people don’t die while the majority of us walk around with extra parts they need to live?  I am CERTAIN that there are more than 6,000 people in this country who would step forward to help solve this problem if they knew more about the topic, and how simple the solution is.

There was a White House summit in May this year which brought together doctors, surgeons, researchers, non-profits, social media, and more into 1 room, where they discussed a variety of topics related to transplant.  The full review delves deep into promises and initiates made surrounding the following topics:

  • Reducing the organ wait list
  • Research and development
  • Closing the gap between who believes in organ donation and who IS an organ donor
  • Increasing the number of transplants and improving transplant outcomes
  • Patient support and increased access to organs

It was a big deal, and we have set the bar higher than ever as a country with these life-saving initiatives.  It’s a good read because it really spells out where we are and where we are going in this country with organ donation practice and policy.

In my modest opinion, I think that they missed addressing donors’ rights, patient education, and maximizing transplant chains.  I will touch on this briefly.

Donors’ Rights:  People can’t afford to be a donor.  They can’t afford to travel, they are afraid to get fired, they have to use their vacation time.  They don’t have a place to stay near the hospital.  Their families need to eat out and live in a hotel.  It’s expensive, and uncomfortable without the right resources.  We do not celebrate donors and do not protect them after they donate.  How many more people would be willing to donate if their rights were protected, and they didn’t have to worry about loosing a job or money over it?  What if we gave them incentives so that they benefited from donating?

Patient Education:  You cannot always depend on a hospital to tell somebody in need of a transplant what their options are.  A huge number of people we talk to don’t realize they can be dual listed (be on 2 transplant lists and have a better shot at getting an organ).  They are not told about living donation and how to make “the ask” for one, so they never consider living donation as an option.  Some hospitals will tell you to check into hospice rather than make you aware of transplant options.

Transplant Chains:  Transplant chains start with a catalyst, and the nice thing about a chain is that it allows as many as 40 people to benefit from the right catalyst starting the chain.  We could save more people if we broadened our pool of catalysts.  What if deceased donors could start a chain?  What if all hospitals abided to the same standards of sharing in effort to maximize a chain, thus saving more people?

It’s a step in the right direction for sure, and I am excited to see what happens. How will patient outcomes and transplant numbers be positively impacted this year and next year?  I hope that we start peeling the layers off, and start talking about the issues that matter- the issues that are keeping our country from being the leaders in organ donation.  We have a long journey ahead to be that country!

Resources

 

 

Partner, Partner’s Take

BY GUEST BLOGGER:  ROB LEE

A while back, Laurie came to me and told me that she wanted to donate an organ; all of her intentions were good- she wanted to give back to the system that gave her dad a new liver.  I’ll be completely honest, I didn’t like hearing her say this, mainly because I knew that once Laurie puts her mind to something she does it.  So, in a sense, I knew that there was no convincing her otherwise and I was a little uncomfortable with that.  I, to this day, cannot pinpoint why I didn’t like hearing this from Laurie.  Was is jealousy, or selfishness? Why would I care whether or not Laurie wanted to become a living donor?  This is something I struggled with at the beginning of Laurie’s journey.  Was it a purely selfish reason?  I, at one point, justified this by telling myself that I didn’t want anything bad to happen to Laurie as a result of the surgery she would undergo. Obviously I would never want anything bad to happen to her, so why would this be a reason to hope she would forget about wanting to be a living donor?  I had seen, witnessed, and took part in almost everything that went on when her dad was going through his liver transplant and I didn’t see where she was coming from.  I mean, I was all about making sure I was signed up on the national organ donor registry and I was (am) all for getting people to sign up for this list. But I still didn’t understand what Laurie’s motivation was to be a living donor…

Time went on and there was no mention of organ donation and it seemed that it was a “fad” that had passed.  As time passed and Laurie became more and more involved in the transplant community with Transplant Village and Northwestern Memorial Hospital, I started to see how much Laurie was learning about the whole community and the people involved… this was becoming her passion.  I started to doubt my feelings about her being a living donor.  She came home with stories of people that had given their kidney or liver to a complete stranger… why am I only hearing about this kind of stuff now?  Why aren’t these stories shared more across media outlets?  Here I was, in my mid-thirties, really hearing about how common it was to be a living donor to a stranger.  What a brilliant idea!

montucky

As a result of Laurie’s continued time and commitment to this cause, I started to learn more and more about the importance of living donors.  I found myself fascinated with why we, as a society, are afraid to change the way we think about this.  You hear the term “paradigm shift” thrown around a lot these days, usually used out of context and incorrectly.  Well, the cause that Laurie has dedicated her life to is a real paradigm shift.  We could virtually eliminate the need for people to die waiting for a kidney if we changed our thought process as a society.  This won’t be an easy undertaking, but there are plenty of people, like Laurie, that are dedicating time, resources, and most importantly, organs to attempt to shift the paradigm.  What was I thinking before?

I started to realize that the journey that Laurie has started will be a long one.  She is on the list to become one of the growing numbers of selfless people that want to donate an organ just because it is the right thing to do.  There’s no prize or reward for what Laurie is doing, it is a purely selfless act that she hopes will help to effect change in our society.  Her goal of showing how easy and normal this can be is so important.  What a phenomenal cause to take part in!  As her spouse, friend, and business partner, I don’t know why I ever thought twice about her decision to become part of such a wonderful cause.  I was selfish and perhaps jealous of the cause that Laurie was dedicating time and energy to.  It was the easy thing for me to do- question the unknown.  It was easy to doubt this, and really difficult to support something that I previously put no effort into learning about.  This is the time when a spouse and friend need the full support of their friends, family and partners.  There is no time to question whether or not someone should so this… they need the support from family and friends from the onset of their decision.  This is journey that will be filled with plenty of unknowns and potential loneliness as there isn’t a huge community to seek support from- yet. This is a time for me to be there and show unconditional support for Laurie.  Any thoughts of making this about me have since gone.  Laurie’s passion and cause has become a part of OUR life, not just hers; I believe in this too.  Laurie is an inspiration to me and I now find myself wanting to do what she has chosen.  I believe in this cause and have been inspired by Laurie to also offer up a kidney if I am fortunate enough to qualify.

I have found that it is really easy to question or doubt the decision of a loved one to become a living donor.  Its easy because society has made it easy to doubt it and has made it easy to say “I’ll save my kidney in case mom needs it one day”.  What happens if mom (or other family member) never needs a kidney and you grow old and become unable to donate waiting for the perfect opportunity?  What happens then?  Did you make the right choice?  Why not help to change the way society thinks about this… why not strive to have living donors be the norm and not the abnormal?

I love going to Phish concerts with Laurie.  I picked this song because it means you don’t have to change yourself… just know who you are, and be true to you… and the greatest happiness you can find is when you’re just wasting your time with someone you love that realizes you aren’t going to give them anything fake. You are you… you don’t need to be anything else.

Forever in Blue Jeans

One of the people who I am most grateful for in my life is Rob Lee.  He is my partner in life, partner in crime, partner in business, partner in pet-parenting, and partner in pretty much every other corner of my life.  Otherwise known as “the General,” he is liked by all, and one of his most charming characteristics  is that you can take him anywhere.  He prefers not wearing a suit, but he’s the kind of guy that you can take to a black tie event, on a hunting trip, or as a chaperone on a girls’ night.

Today is a milestone for us as we celebrate our 8th Anniversary married!  While I feel like there are many parts of our marriage that come wonderfully easy, marriage is hard work, and I consider our marriage one of my/our biggest accomplishments.  We work hard at it and I am proud of us!  This is us 11 years ago the night we decided to get married.  That was a great night 🙂

kissIMG_5664

When you go through the psych analysis to donate a kidney, one of the topics that is covered in depth is the details about your support system.  They ask what your spouse thinks, and what you would do if your spouse decided further into the donation process that they actually DON’T want you to donate a kidney.

Rob is 100% behind me in my kidney donation, and I am really grateful for that from the deepest part of my heart.  I really don’t know if I would want to do this if I didn’t have his support.  I imagine I would feel resentment, hurt and frustration if I didn’t have his support.  It wouldn’t be an adventure or a journey, it would be an event that gave me happiness while making him unhappy.  That really wouldn’t work for me.

So thanks you Rob, for being a rock, and for supporting me unconditionally through this.  I am a lucky woman to have you, and if I don’t tell you that enough, I hope you know, and I hope you know how important your support is to me in THIS.  People can’t do this without somebody like you by their side, and I never had to question that you would be there.  I hope that I can be like you, for you, the next time you do something that requires my love, encouragement, and support.

Happy Anniversary!  Looking forward to a lifetime more!

TSA Precheck (Kidney Style)

In a previous blog, I described how Northwestern does all of their transplants “in house,” rather than participating in chains with other hospitals.  I wasn’t 100% correct about that.  Northwestern PREFERS to do all of their transplants in house, and to do all of the surgeries at the same time, but they do make exceptions, and it looks like they will make one with me.

Since the last chain dissolved, there has only been 1 other match that keeps popping up in Northwestern’s system who could receive my kidney based on blood type.  That person has a willing donor to continue a chain, however that willing donor is AB+.  Somebody who is AB+ can only donate to somebody else who is AB+, and only 3% of the population is AB+.  There is nobody at Northwestern who would be a match for that AB+ person.  So at this point, if Northwestern keeps it in house, I would donate to 1 person, and there would not be a chain, it would be a single donation and would not maximize the gift.

To remedy the problem, Northwestern is adding me to the KPD Pilot Program.  Getting into the program required 2 more blood tests, and minimal paperwork.  This program is part of the Organ Procurement and Transplantation Network (OPTN). The OPTN is managed by the United Network for Organ Sharing (UNOS). OPTN registers and tracks everyone who registers in the Pilot Program. Transplant center staff enter eligible donor and recipient medical information into UNOS’ computerized system. UNOS works with transplant centers throughout the United States to search for cases where the donor in each pair is compatible with the recipient in another pair (or multiple pairs). By exchanging donors, a compatible match for both recipients can be found.

This option allows for a larger pool of donors and recipients, and will hopefully maximize the opportunity to start a multi-person chain.  My surgery will still be at Northwestern, however my kidney can potentially be flown out of state now for a match somewhere else in the country.  The game changed a little, and the whole chain will not stay in house as I described before.  Because this pool is larger now, it is far more likely that they will find a chain right away.  The list is updated 2x/week, so by next week, there could be a new chain in place.

They wrap the kidney in bubble wrap…..