by George Taniwaki

This month the University of Washington Medical Center (UWMC) has been highlighting its transplant program. Using a combination of traditional and social media, UW Medicine publicized its success with some great stories about its transplant patients and donors.

The first story celebrates UWMC’s 6,000th solid organ transplant. The milestone was achieved by Dr. Stephen Rayhill, a surgeon in the kidney transplant program. The patient is Frannie McLaughlin, who received a kidney from her daughter, Kiki McLaughlin-Cook (Yakima Herald Nov 2013). The surgeon and donor are featured on UW Medicine’s Facebook page, in the post reproduced below.

UWMC_KikiTx

Incidentally, Dr. Rayhill was the surgeon who transplanted the kidney I donated. (He was not the surgeon who removed my kidney though, that was Dr. Ramasamy Bakthavatsalam.)

Next up is post featuring heart transplant patient Cindy Kehl, who this year is celebrating 20 additional years of life.

UWMC_6000thTx

Next is a post featuring Ameen Tabatabai, who after receiving a new liver is now healthy enough to attend UW and is training with Team Transplant, a running group at UW Medicine.

UWMC_AmeenTx

Next are Brad Bonn and Ken Price. Brad is a recent lung transplant recipient while Ken became the first listed double lung transplant recipient at UW Medicine 20 years ago (KOMO News Jul 2013).

UWMC_BradTx

UWMC_KenTx

Finally, on January 14, UW Medicine performed its first Live-Tweet of a kidney transplant surgery. The surgeon was Stephen Rayhill and the patient was Dave Skelton, a patient at Northwest Kidney Centers. (A Live-Tweet is a technique where a participant in an event provides pictures and commentary in real-time to an audience using Twitter. If you are not a Twitter user, it’s a bit hard to explain.)

Dave’s wife, Brittany, was willing to donate a kidney to him, but was not a biological match. The two asked UWMC to enter them into a kidney exchange to find a match. (UWMC is a member of the National Kidney Registry.) The NKC was able to find a match and Dave became the second patient in a chain. His new kidney came from a donor in South Carolina. Two days later, Brittany underwent her donor surgery and her kidney was sent to a recipient in Missouri.

This is a long chain involving twelve donor-patient pairs (24 surgeries total). “Being part of the 12-way swap is very exciting and humbling. It is amazing the selfless commitment the donors are displaying. People are amazing and have rekindled my faith in humanity,” says Dave. For more about kidney exchanges see this Mar 2010 blog post.

To see the original tweets, search Twitter for @UWMedicineNews #UWMedicineKidney. To see the summarized tweets, go to Storify, sfy.co/dYLB.

UWMC_StorifyDaveTx

To see the slideshow version go to Storify slide show.

image

Advertisements

by George Taniwaki

There is an ongoing argument regarding whether we as a society should pay people to donate a kidney. These arguments, both pro and con, revolve around two issues, whether such payments are the right thing to do (ethics) and whether they would increase the number of available organs (economics). This blog post will describe the economic effects of payments.

Organized markets

Before analyzing the effect of payments on the supply of donors, I want to assure readers that payments can be regulated. For instance, nearly all the blood, plasma, and platelets in the U.S. is collected from unpaid donors. Yet at the same time, there is also an active government regulated market for plasma. Similarly, family members and friends are a common source of donor eggs, donor sperm, and surrogates to allow individuals to have a child. But there is an active market for these as well.

An organized market for donor organs would not likely include person-to-person transactions. Rather, it would involve highly regulated, non-profit entities that would act as intermediaries between donors and patients, similar to the existing network of organ procurement organization (OPO) that recover and distribute organs from deceased donors. In other words, ignore the image in Figure 1.

kidney_for_sale_tshirt

Figure 1. Kidney for Sale t-shirt. Image from zazzle.com

One of the arguments against paying donors for organs is that it will favor wealthy patients who can afford the price. That is not necessarily so. Laws can still be written to prohibit individuals or hospitals from making payments to donors. The payments can be regulated to only allow insurance companies and other government sanctioned groups to make payments. Similarly, the organs collected from donors need not be transplanted to patients based on ability to pay for the organ. They can be allocated by whatever method is deemed medically and ethically justified.

More patients could benefit from transplants

Many kidney disease researchers, ethicists, and economist agree that under the right circumstances, increasing transplant rates would be a good thing. First, transplants improve medical outcomes. Second, transplants save money.

Studies have shown that patients with end-stage renal disease (ESRD) who receive transplant therapy live longer than those who receive dialysis therapy (U.S. Renal Data System 2013 Report). This is true even after adjusting for the fact that transplant patients are healthier on average than the overall kidney patient population (R. Wolfe, et al., New Engl J Med Dec 1999).

The data also shows patients who receive transplant therapy report a better quality of life than those who receive dialysis therapy (W. Fiebiger, et al., Health and Qual Life Outcomes Feb 2004).

More transplants would save money

In addition to being better for the patient, transplants can save money. Dialysis therapy costs about $75,000 per year per patient. Transplant therapy costs about $150,000 for the first year (evaluation, surgery, recovery, and follow-up) and then $15,000 per year thereafter (antirejection medication, infection control, and monitoring). Over the lifetime of the graft, a living unrelated donor can save society $94,000 compared to dialysis (A.J. Matas and M. Schnitzler Amer J Transpl Feb 2004). Adding the value of the additional 3.5 quality-adjusted life years for the patient increases the social benefit to $269,000.

A recent paper by B. Manns et al. (Clin J Amer Soc Nephr Dec 2013) indicates that even a 5% increase in the number of donors would justify a payment of $10,000 each by providing an incremental cost-savings of $340 and a gain of 0.11 quality-adjusted life years.

There is a shortage of suitable organs

The reasons more kidney patients don’t pursue and receive transplant therapy are not fully understood. One thing is certain though. The number of viable organs that become available each year is significantly lower than the number of patients newly diagnosed with ESRD. Thus, the expected wait time for a transplant continues to get longer (up to 8 years in California).

About 15% of patients on the waiting list die each year, so the proportion of patients who die without ever getting a transplant increases as the wait gets longer (over 50% in California). This long wait may deter some patients (and their doctors) from even starting the transplant evaluation process. As of this writing, there are 98,935 people in the U.S. waiting for a kidney transplant.

According to the U.S. Renal Data System, there were 115,643 people newly diagnosed with ERSD in 2011, the latest year data is available. This includes 2,855 who received a preemptive transplant (meaning they received a transplant before having to go on dialysis). In contrast, the  Organ Procurement and Transplantation Network (OPTN), shows there were only 16,814 transplants performed in the U.S. in 2011. The breakdown by donor type is shown in the table below.

Living directed donor   3,761
Living exchange donor       575
Living nondirected donor       157
Deceased directed donor       123*
Deceased nondirected donor 12,198
Total 16,814

*Assumes that 1% of deceased donor transplants are directed (OPTN 2009)

Of the total, 3,761 came from living directed donors, meaning the donor and the recipient knew each other. 575 came from exchange donors, meaning the donor knew the intended recipient but was incompatible so donated to a stranger who was in the same position and they swapped kidneys (for details see Mar 2010 blog post).  157 came from living anonymous or nondirected donors, meaning the donor did not have an intended recipient (similar to most blood donations). Finally, 12,321 came from deceased donors (of which all but about 123 are nondirected).

Costs to becoming a live kidney donor are high

For now, we will ignore the impact of paying for deceased donor organs and focus on a possible market for live donors. Further, we will ignore the ethics and legality of paying people to become live kidney donors. We will cover these issues in a future blog post. For now, we will explore the economics of paying for live donors.

Being a living donor can be expensive. The evaluation and surgery are paid for by the recipient’s insurance. However, there are lots of out-of-pocket costs such as travel to and from the transplant hospital for evaluation. In some cases, there can be multiple trips and may require a hotel stay for out-of-town donors. There are also opportunity costs, such as lost wages (or foregone billings for the self-employed) for the time spent in evaluation, surgery, and recovery. The time spent at home after surgery can vary from a few days to over a month, so this is a real burden for people who don’t receive sick pay or disability insurance from an employer. I estimate the total out-of-pocket and opportunity costs for a typical donor to be about $2000.

Usually, all of these costs are borne by the donor, meaning most donors are wealthy. Sometimes, the recipient will pick up some of these costs, especially if they are wealthy. Sometimes the donor and recipient conduct a fund-raiser to pay these costs. Finally, there are several charities that provide reimbursement if the donor or the recipient cannot afford the financial burden of paying for a living donor transplant. The best known of these is the National Living Donor Assistance Center.

Supply curves for nonaltruistic, nondirected donors

To analyze the effect of payments for kidney donors, we will use the basic technique used by economists called a supply curve. The supply curve shows the quantity (Q) of organs supplied for any price (P). We will look at the impact of paying for kidneys on three groups of living donors.

The first group is the nonaltruistic, nondirected (NAND) donors. This consists of the population of people who are aware of the existence of people who need a kidney transplant but don’t know anyone personally who needs a kidney. Further, they may be willing to donate a kidney, but have no desire to donate a kidney for altruistic reasons.

Figure 2 shows a hypothetical supply curve for kidneys from this population. At the current offering price today (Pcur), the quantity of kidneys offered by NAND donors is zero. Note that Pcur is negative and reflects the costs associated with  being a donor.

Raising the offer price will not result in any donors appearing until an offer of PNANDmin is made and the first donor will step forward. This initial price may be quite high due to what is called the repugnance factor by economist Alvin Roth (J Econ Perspectives, Summer 2007). (Repugnance will be discussed again when we explore the moral and legal issues surrounding payments to donors.)

As the price rises, more donors appear. However, at some point there may be some proportion of these potential donors who will be very reluctant to volunteer, regardless of the amount of money offered (perhaps because of very high repugnance, fear, or dislike of pain). At this point the supply curve will rise steeply, until you reach the last person in the population (QNANDmax) where a very large sum of money must be offered before they will be willing to undergo kidney donor surgery.

DonorSupplyNAND

Figure 2. Supply curve for nonaltruistic, nondirected donors

Note that I made a simplification in the supply curves shown above and below. I assume the out-of-pocket costs and opportunity costs for all donors is the same and equal to Pcur. Actually, this is not true and these costs can vary widely. However, allowing for varying costs makes the analysis much more complex without adding any new insights.

As an aside, behavioral research shows that people’s preferences are not stable, called the endowment effect. For instance, many people may say they would not donate a kidney for $20,000. But imagine what would happen if we gave those people the $20,000 first and ask them to consider what they could do with that money. Then we wait a few minutes and ask them if they would rather give the money back or donate a kidney. At that point, many may decide donating the kidney is their preferred choice.

Supply curve for directed donors

The second group we want to look at is potential directed donors. These are people who know someone who needs a kidney transplant and may be willing to donate to that person. The reasons may be altruistic, self-interest (not wanting to lose a relative or friend), or perhaps even coercion by the recipient or family members. Regardless of the reason, we can draw a supply curve like the one shown in Figure 3.

This curve looks very similar to the one in Figure 2 except it is shifted down. That is, once a potential donor develops a connection to the recipient, the minimum reservation price drops. That’s because the act of donation generates utility for the donor. At the current price of Pcur there are QDDcur donors.

DonorSupplyDD

Figure 3. Supply curve for directed donors

Raising the price offered to this group should increase supply, even if the offered price is below PNANDmin. Just reimbursing every donor’s out-of-pocket and opportunity costs could have a significant impact on supply. However, the supply is limited to QDDmax based on the total number of people who know someone who needs a transplant.

Supply curve for altruistic nondirected donors

The third group we want to look at is altruistic nondirected (AND) donors. Even though these donors do not know the recipient, and in fact often will never know the recipient, the supply curve for this group looks very similar to that of the directed donors. The utility an AND donor derives from her donation is not from helping a known person. Perhaps, it comes from imagining that the donation is helping a deserving person, or helping society as a whole, or the donation represents an act of altruistic sacrifice. At the current price of Pcur there are QANDcur donors.

Similar to the case for directed donors, just reimbursing every donor’s out-of-pocket and opportunity costs could have a significant impact on supply. Offering a payment (which a truly altruistic donor could decline and donate to charity) may increase the supply as well. However, it is not likely to have a large effect. I suspect the supply of altruistic donors is inelastic. I also believe the total number of people who would be willing to donate to a stranger QANDmax is limited as well, though probably significantly larger than the current 150 per year.

DonorSupplyAND

Figure 4. Supply curve for altruistic, nondirected donors

Shifting the supply curve

There is an alternative response to raising the offering price to AND donors. Since the utility the AND donor receives is dependent on psychological reward, any action that reduces the value of that reward may shift the supply curve upward. At the limit, the AND donors will become a NAND donors. In the worst case, the former AND donors may have a higher reservation price than the NAND donors causing the supply curve to be above the curve for the NAND donors (dashed brown curve S’ in Figure 4).

If this supply curve shift occurs, then paying donors could have the perverse effect of reducing the total number of donors until price PNANDmin is exceeded and NAND donors begin to appear.

Conversely, a well-crafted marketing effort to encourage more people to become AND donors can keep the AND curve from shifting upwards. It can also convince some NAND donors to reconsider their position and become AND donors, causing the total number of NAND donors to shrink and the number of AND donors to rise (shifting QNANDmax to the left and QANDmax to the right).

Add it all up

Combining the three supply curves would create an overall supply curve that would look similar to the solid line in Figure 5. At the current price Pcur, the number of donors is QDD+ANDcur. When the price reaches PNANDmin, the NAND donors will begin to enter the market.

If making payments causes all the AND donors to become NAND donors, then the supply curve shifts to upward as shown by the dashed line S’.  At the current price Pcur, the number of donors falls to QDDcur. When the price reaches PNANDmin, the NAND donors will begin to enter the market. When the price reaches P’ANDmin, the former AND donors will enter the market. Note that even if all the AND donors become NAND donors, there will still be a market price somewhere above PNANDmin that will result in more donors than are currently available at the current price of Pcur.

DonorSupplyTOT

Figure 5. Cumulative supply curve for all donors

More resources

For more on the economic analysis of organ markets, see the following papers.

A. Tabarrok. Library Econ Liberty, Aug 2009. Discusses payment for deceased donor organs.

Scott Halpern, et al. Annals of Int Med, Mar 2010. 342 participants were asked whether they would donate a kidney with varying payments of $0, $10,000 and $100,000. The possibility of payments nearly doubled the number of participants in the study who said they would donate a kidney to a stranger. Payment did not influence those with low income levels more than those with high incomes.

Gary Becker and J.J. Elias. J. Econ Perspectives, Summer 2007. A thorough analysis of the cost and number of transplant performed if payments were allowed for the donation of both live and deceased donor kidneys. It also counters the arguments against payments.

by George Taniwaki

Once you and your kidney matchmaker have mailed letters to all of your friends, relatives, and others on your mailing list, consider broadcasting your message to an expanding circle to include coworkers, church members, neighbors, and others in your social network who you don’t know as well. One or more of them may be willing to begin the donor evaluation process. But until you tell them, they are unlikely to know of your need for a kidney donor. And if they don’t know, they won’t get tested.

One of the best way to reach these folks is a flyer (Fig 1) posted on a message board where they can see it.

FlyerSandra

Figure 1. Example of a half-page flyer. Courtesy of Sandra Driscoll

Design a flyer

A flyer can be almost any size from business card (2” x 3-1/2”) to poster (24” x 36” or more). For convenience, I recommend making it 8-1/2” x 11” (or A4 size in Europe) with vertical (portrait) orientation. A good flyer is like an advertisement. It must catch a person’s attention and make them want to stop and read it. Like an advertisement it should have the contain the following elements:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)
  6. QR code (optional)
  7. Tear-off tabs (optional)
  8. Calling card holder (optional)

Tips for creating a flyer are available at the Living Kidney Donor Search (LKDS) website

Items 1 through 5 (Headline to Logo)

Advice for creating a headline, photograph or illustration, message to potential donors, your contact information, and logo are provided in a separate Nov 2013 blog post.

The advice in that blog post was specifically targeted toward the design of a calling card, which is generally much smaller than a flyer. Just because a flyer has more space available doesn’t mean you need to fill it all with text. Having abundant white space makes the flyer attractive and can guide the eye to the important information. Use the extra space to make the headline bigger, make the picture bigger, and add more white space around your message to potential donors. Resist the temptation to add more text and make your story more detailed. Instead keep it the same as your calling card. Or, if you do add more text, do it to make your story more persuasive in order to drive people to your website or take other action.

Add a QR code to your flyer

A QR code is a 2-dimensional bar code (Fig 2). Anyone who owns a smartphone with a built-in camera and a bar code reading app can scan the bar code and be directed to a website with more information.

If you have a personal website or Facebook page with information about your need for a kidney donor, you should add a QR code to your flyer. You can do this by going to http://delivr.com/. This free service will create a bar code for you. Further, every time someone scans your bar code, it will track it and provide you with statistics about the users.

For instance, I created an account on delivr.com. I created a new campaign and entered the address for my patient guide, https://realnumeracy.wordpress.com/kidney-patient-guide/. The delivr.com service creates a custom link for me delivr.com/2tpt6 and generates the QR code that I can include anywhere (Fig 2).

FlyerQRcode

Figure 2. QR code that directs readers to delivr.com/2tpt6 and redirects to realnumeracy.wordpress.com/kidney-patient-guide

An example of a flyer with a QR code is shown below (Fig 3). One suggestion to improve this flyer. I would include the web address in the flyer. That way, people without a smartphone can still visit the website by writing down the address and visiting it once they get home.

FlyerTarra

Figure 3. Example of a flyer with QR code. Image from Shining Strong for Tarra

Add tear-off tabs to your flyer

To engage people who don’t have a smartphone, you can add tear-off tabs to the bottom of your flyer. The tear-off tab should include your phone number and website address (Fig 4). A little trick to make people more likely to tear off one of the tabs is to tear the first one off yourself before posting the flyer.

Also remember to include all the contact information in the body of the flyer so that people can copy it down in case all the tabs are taken.

FlyerEric

Figure 4. Example of a flyer with tear-off tabs. Image from KidneyQuest.com

Add a calling card holder to your flyer

Even better than tear-off tabs is folding the bottom of the flyer to create a pocket to hold your calling cards (Fig 5). Encourage people to take one. Again, remember to include all the contact information in the body of the flyer so that people can copy it down in case all the calling cards are taken.

FlyerCallingCardHolder

Figure 5. Example of a flyer with calling card holder

Printing and distributing your flyers

The least expensive way to print your flyers is to use a home inkjet printer. If you don’t have one, you may be able to have your matchmaker or another friend print them for you. Otherwise, you can have them printed at a local print shop. For great tips on choosing paper and printing flyers check out the LKDS website.

Places that often have a bulletin board where you can post your flyer include:

  1. The print shop where you bought your flyer
  2. Grocery stores
  3. Your workplace or union hall and those of all your friends and family members
  4. Local shopping malls/strip malls
  5. Churches

Remember to get permission from the owner of the bulletin board before posting your flyer.

To make it easy for your friends and family to print their own flyers, make sure a copy of it is posted on your website.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

If you are a kidney patient seeking a living donor, you need to start what Harvey Mysel of the Living Kidney Donors Network (LKDN) calls a Kidney Kampaign. A search for a donor is all about numbers. You want as many people as possible to know about your need for a kidney transplant. Whenever you meet someone, tell them about your condition and your story. Then, at the end of any conversation, remember to give them calling cards printed with pertinent information (Fig 1).

Giving people your calling card serves two purposes. First, it will remind them later of who you are and how to contact the transplant center. Second, even if the people who you give the card to do not personally decide to get tested, they may remember your story and speak to 3, 4, or maybe even 20 other people about their meeting with you. One of these people may step up and get tested. This is how social networking can help you reach a vast audience and can help you find a living donor.

HarveyCardFrontHarveyCardBack

Figure 1. Example of a kidney kampaign calling card. This is the card used by Harvey Mysel, the founder of Living Kidney Donors Network when he discovered he needed a transplant in 2012

Give away your calling cards

You and your matchmaker (topic of a future blog post) should give away your calling cards freely. Hand them out to all your friends, family, and acquaintances, even to strangers. And don’t just give them one card. Offer several and ask the recipients to help spread your story and to give away the cards to others.

Calling cards are useful beyond face-to-face encounters. When you and your matchmaker send cards and letters (see Nov 2011 blog post), remember to include several calling cards in the envelope.

When you post a notice on a message board (topic of a future blog post), remember to include a pocket to hold a stack of calling cards.

When you and your matchmaker host an event (topic of a future blog post), remember to hand out calling cards to all the participants.

Design a calling card

A calling card is different from a business card. A business card just presents the facts, your name, company, and contact information. A Kidney Kampaign calling card provides contact information, but it must also provide a compelling story to get the person receiving it to take some action.

There are three very good sets of instructions on creating a calling cards to find a kidney donor. The first is by the Living Kidney Donors Network. The other two resources are provided by Living Kidney Donor Search and the Living Kidney Donor Search tools and tips. You should read the excellent advice given on all three websites.

A basic business card is 2” x 3-1/2”, printed one-side, horizontal (landscape) orientation, in black and white (Fig 2). But to make your card stand out, consider the following options:

  1. Vertical (portrait) orientation
  2. Four-color printing, especially good for photographs
  3. Printed two-sides, also called duplex printing, almost required to fit all the information needed
  4. Reverse type, that is, white lettering on a dark background (should be limited to large bold text, like the headline)
  5. Picture or graphic that runs off the edge of the card, also called a bleed
  6. Folded card, shaped like a tent, helpful if you have a longer story to tell and will also make you card stand out from other cards

CallingCard

Figure 2. Examples of the options described above

A kidney donor calling card is quite different from a business card. A business card is passive and just provides basic information for the recipient of the card to contact you. Your calling card is more like an advertisement. Like an advertisement, it should contain the following five items:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)

Each of these items is described in detail below. When designing your business card, start with pencil and paper and rough out the design before going to the computer to create the final design that will be printed.

Headline

The first two things a person will see on your calling card are the headline and the photograph. If you don’t have a photograph on your card, then you will definitely need a headline. The headline should be direct and no more than one sentence long. Some ideas are:

  1. Help me fight chronic kidney disease
  2. Help me find a kidney donor
  3. Become a living kidney donor
  4. You can give the gift of life
  5. Save a life, start with a simple test

Photograph or illustration

A large photograph or illustration is optional, but it is highly recommended that you include one. A picture will draw the attention of any person who looks at your calling card for the first time. To be effective at creating a positive connection, the photograph must be of high quality. Don’t skimp. Don’t try to take the picture yourself. Ask your matchmaker or a camera-savvy friend for help.

To make the best first impression, the picture should be of high technical quality. You often cannot fix a bad picture using a photo editing tool like Photoshop. Instead, start with a good shot. This means the picture should be:

  1. In focus (to avoid fuzzy image)
  2. Taken with a tripod or steady hand (to avoid shaky or blurred image)
  3. Well lit (to avoid grainy background or red-eye)
  4. Taken in daylight (to avoid blue fluorescent cast or orange tungsten cast)
  5. Taken with the background chosen with care and cropped to eliminate extraneous items in the background

Some recommended subjects that will make the photograph compelling are listed below.

  1. A close up of you smiling (a natural smile, not a forced one)
  2. You with other members of your family who cannot be donors (you will need to explain why they cannot be donors in the text of the calling card)
  3. You with pets
  4. You with props that show you participating in a favorite hobby or family activity

Message to potential donors

Your message to potential donors should include an appeal that explains why you want them to donate. It should also include instructions on how to get started as a donor. The message has to be short. You can only fit about 100 words on the front and back of a standard business card.

An oversized card can have more words, but I actually recommend having fewer words on the card and instead include a link to your website for people who want more details. Some ideas on what to include are:

  1. A short biography and explanation of why you need a kidney transplant
  2. How your family is affected by your condition
  3. Medical benefits to you of living donor transplant (compared to lifestyle when undergoing dialysis therapy)
  4. Who can donate, must be between XX to XX in age (ask transplant center for its range), no uncontrolled hypertension, diabetes, or kidney disease, overall good health
  5. How to learn more about the costs and risks of becoming a living donor (link to website for details)
  6. Call for volunteers to get a simple blood test to start the process
  7. Contact info for the living donor transplant coordinator, or the independent living donor advocate, depending on the process at your transplant hospital
  8. Encourage them to spread the word about your need to others

with you the latest Be sure to inform the transplant coordinator and independent living donor advocate of your plans to publicize your donor search.

An example of a biography is shown below:

Hello, my name is John Smith. I have kidney disease and I’m in need of a kidney transplant. The wait for a deceased donor kidney can be more than 5 years. To avoid this wait, I am actively pursuing a living kidney transplant. A kidney from a living donor lasts about twice as long as one from a deceased donor.

Kidney donors need to be healthy, no high blood pressure or diabetic. A blood test will determine whether additional tests will be done to see if you are a suitable donor. To schedule a test contact Janet Jones, my transplant coordinator at the New York Transplant Hospital: jjones@nyth.com or 212-456-7890.

To learn more about the living donation process you can contact me (jsmith@gmail.com or 212-123-4567), visit the LKDN website (www.lkdn.org), or contact my transplant coordinator.

Your contact information

The following information should be included on the front of your calling card:

  1. Name
  2. Phone number (optional, but recommended)
  3. Email address
  4. Web address of your donor search website or Facebook page

Logo

If you are promoting organ donation in general. you may want to include the Donate Life America logo. Similarly, if you are promoting the Living Kidney Donors Network program, you may want to include the LKDN logo.

Where to buy calling cards

There are hundreds of choices for getting your calling cards printed. Any small print shop should be capable of showing you paper, ink, and other options for a professional looking card. If you prefer buying on the web, LKDN has created a portfolio of calling cards on the FedEx Office website (formerly Kinko’s).  To use the portfolio and purchase cards from FedEx Office:

  1. In a web browser, navigate to http://www.fedex.com/us/office/designprint/index.html
  2. Click My Account (on left)
  3. Type E-mail = info@LKDN.org and Password = businesscard and click Sign In
  4. Click View My Portfolio (in Design Center box)

A box of 250 business cards in color, printed two-sided will cost about $50 plus tax and shipping. If you need help, call FedEx Office customer service 1-888-889-7121.

If you want to design your cards from scratch and save money too, Living Kidney Donor Search (LKDS) recommends using Zazzle. The site guides you through the design steps. A pack of 100 cards printed 2-sided will cost about $25. To save even more, LKDS says discount codes for Zazzle are often available on RetailMeNot.

Another popular source for business cards is CafePress. They have a large number of designs available. However, they don’t support 2-sided printing or custom color printing.

More examples

Three more examples of kidney donor search calling cards are shown below.

CallingCardMandyFrontCallingCardMandyBack

Figure 3. Kidney Kampaign calling card for Amando Melgar, III. From LKDN portfolio on FedEx Office website

CallingCardTentFoldCallingCardTentFold2

Figure 4 and 5. Examples of covers for tent fold cards based on a t-shirt design sold by Zazzle (left) and a poster sold by CafePress (right). Designs are copyrighted

Thanks to Harvey Mysel of Living Kidney Donors Network for providing me with example cards that I use in my patient counseling. Additional thanks to Suzanne Kloss of Living Kidney Donor Search for providing additional tips on designing and using calling cards.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

I recently came across a series of articles about one very generous man. A man who decided to help a distant relative he barely knew. A man who donated his kidney to a stranger he didn’t know at all. And a man who despite being only a mediocre swimmer is now in training to swim across Lake Ontario to raise money and awareness for a camp for dialysis patients and their families.

Mike Zavitz of Pickering, Ontario was 43 years old when he offered to donate his kidney to a distant relative in 2010. They were not a match, but Canada had just introduced a new Living Donor Paired Exchange (LDPE) program that year (see Dec 2010 blog post).

The program is small resulting in a perhaps a dozen kidney swaps (see Kidney swaps explained below) per year, meaning the chances of finding a match are slim. But Mr. Zavitz and his relative were lucky enough to find a match and became one of the first participants in the Canadian LDPE program and the first one at St. Joseph’s Hospital in Hamilton, Ontario.

The story of Mr. Zavitz’s donation appeared in The Hamilton Spectator Dec 2011. Mr. Zavitz’s kidney ended up saving a young man he never met and whose name he didn’t know. In exchange, that man’s  father donated a kidney to Mr. Zavitz’s relative. The surgeries occurred on Feb 2, 2011.

Mr. Zavitz met his recipient, Jesse Hunt, for the first time a year-and-a-half later (The Hamilton Spectator May 2012).

When explaining why he did it, Mr. Zavitz said it was in response to a lifetime of second chances he has received since he was abandoned as a baby and later adopted. “They don’t make Hallmark cards saying, ‘Thank you for rescuing me from a lifetime of foster care and possibly death.’”

MikeZavitzStill

Figure 1. Mike Zavitz interviewed. Video still from Hamilton Spectator

****

Mike Zavitz keeps on giving

The story of Mr. Zavitz’s generosity doesn’t end with his donor surgery. In an Aug 2013 story, The Hamilton Spectator reports that Mr. Zavitz plans to swim 22 kilometers (14 miles) across Lake of Bays near Algonquin Park.

His swim has two purposes. The first is to raise money for the Lions Camp Dorset, a camp designed for dialysis patients and their families. It is a place where they can get away for a week, while still receiving treatment. His goal was to raise CAN$10,000 for the camp.

In a quote in the Hamilton Spectator article, Helen Walker, administrative coordinator of the camp said, “To have somebody who has been involved in a transplant want to give back is amazing. Without Camp Dorset, it would be next to impossible to have a getaway at an affordable price.”

The recipient of Mr. Zavitz’s kidney, Jesse Hunt, had this to say, “I think it’s awesome. When you are not on dialysis, you realize the freedom you have. You can’t travel [on dialysis] or go to a cottage or get on a plane. If you can get away, it’s very important.”

Mr. Zavitz’s second goal is to raise awareness for organ donation, and especially living donation. His long distance swim shows people that organ donors can still live incredibly active lifestyles. In fact, becoming a donor may be a life changing event that actually makes you more mindful and more active.

A follow-up report on CKLP FM radio Aug 2013 says Mr. Zavitz completed the swim in 10 hours and 45 minutes. He exceeded his goal and raised CAN$11,000 for Lions Camp Dorset.

Next year, Mr. Zavitz plans to swim Lake Ontario, a distance of about 52 km (32 miles). To follow Mr. Dorset on Facebook, his page is at Tied Together Swim. To learn more and to make a donation go to tiedtogetherswim.com. The video featured on the website was produced by his recipient Mr. Hunt, who is a filmmaker.

TiedTogether

Figure 2. Screenshot of the Tied Together Swim website

A list of camps for children with special medical needs in the United States is available at the Transplant Living website.

****

Kidney swaps explained

A kidney swap begins with a patient who needs a transplant  and has a willing donor who is healthy but is not blood type or HLA compatible. Through a matching service, called a kidney exchange, they can find another patient-donor pair in the same situation where the donors in each pair match the patient in the other pair (Fig 3a).

Finding pairs that match each other is sometimes difficult. Matching becomes easier if a nondirected donor, that is a person who does not have a patient in mind but just wants to donate a kidney enters the exchange. Then all the matches only have to be one-way (Fig 3b).

KidneyExchangePair

KidneyExchangeChain

Figures 3a and 3b. An example of a kidney swap (top) and kidney chain (bottom). Images by George Taniwaki

The use of kidney swaps  and kidney chains to facilitate kidney transplants is a recent phenomena. The first multihospital kidney chain occurred in the U.S. in 2007 (see Sept 2009 blog post). These kidney swaps are getting more common in the U.S. (see June 2010 blog post) but are still fairly rare outside the U.S.

Canada started up a Living Donor Paired Exchange (LDPE) program in Oct 2010 (see Dec 2010 blog post). It only allows swaps. Chains starting with a nondirected donor are not yet permitted in Canada.

by George Taniwaki

In a May 2013 post, I described how to generate publicity for your living donor search by getting a local media outlet to provide news coverage. Not every patient will be able to get the editor or producer to do a news story.  If this is your situation, another way to get your message in front of people is to write a letter to the editor of the newspaper.

Letter-to-the-editor

The letter can be similar to the one described in a Nov 2011 post on sending letters to friends. It should contain the following information:

  1. Introduction of patient and matchmaker and why you are sending this letter
  2. Short medical history explaining why patient needs a kidney
  3. Explanation why matchmaker cannot be donor
  4. Request for potential donors to get a blood test (mention that you are especially hopeful of finding a type O donor if patient is type O)
  5. Contact info for the living donor transplant coordinator at the transplant hospital where surgery will take place (or the living donor advocate, depending on the process at the transplant hospital).

An example letter is reproduced below. It appeared in the Parkersburg (WV) News and Sentinel May 2013.

I am writing this to get the word out about living kidney donation, possible donors. I am writing this for my husband of 22 years. My husband is very special to me. He has been with me through thick and thin, hard times and happy times. He was a truck driver for 12 years.

He always said he felt like the king of the road when he was in his truck, he truly loved his job. He recently had to give up driving trucks because of a kidney disease. He had this problem for a long time, but his kidney problem steadily declined, making him have to give up driving trucks and be on dialysis. He goes to dialysis three times a week. He seems to be doing OK with the treatments; he tolerates it fine.

He is in need of a kidney transplant. We recently went to Ohio State University to be evaluated for transplantation listing on the national waiting list. His doctors said that he is a good candidate for transplant. The average waiting time for a deceased kidney donor is three to five years.

His best chance to get a kidney sooner is from a living donor. I would like to share some information about this. Kidney donors do not have to be immediate family. They can be anyone. For some people a transplant from a living donor may be their only option. Donors and recipients do not have to be from the same area. There are funds available for travel expenses and lodging. Donors return to a normal life with no fluid restrictions, diet restrictions or physical restrictions. Recipient’s insurance covers donors evaluation, surgery, follow-up care. Your health and life insurance won’t be affected if you donate to someone. For more info about becoming a living donor please contact a living donor coordinator (614) 293-6724 or 1-800-293-8965, option 4.

Let’s pray that someone out there might read this letter and decide to be a living donor. Thats why I wanted to put this letter out for all to read. I hope this will be able to reach many, many people. I need your help in this matter for anyone who has a loved one on dialysis and is in need of a kidney transplant. You might save someone’s life by being a living donor.

Christine Cullum

Parkersburg

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

The American Transplant Congress was held in Seattle (where I live) in May 2013. Unfortunately, I was unable to obtain a press pass. However, I was able to review the abstracts of the papers published in the Amer J Transpl May 2013 (subscription required). Concurrent session 10 was entitled Obesity and Other Comorbid Conditions in Living Kidney Donors. There were six papers in this session. The results were not surprising and the most of them were not positive.

The biggest issue is that the number of Americans who are obese is rising. Obesity is correlated with high blood pressure, coronary heart disease, and Type 2 diabetes. These conditions are all correlated with kidney disease, which has increased dramatically in the U.S. Thus obesity is one of the factors driving an increase in the need for kidney transplants.

Further, overweight and obese patients are more likely to experience complications from surgery. This makes them less likely to become candidates for transplant therapy. On the donor side, obesity makes it harder to be accepted as a donor. With rising obesity in the population, this trend may be exacerbating the shortage of kidney donors.

More donors are less-than-healthy

The first paper in the session (Abstract #69) was entitled “Marked Increase in Pre-Existing Morbidity among Living Kidney Donors in the United States.” The study led by J. Schold at the Cleveland Clinic looked at national data from 1998 to 2010. They discovered a significant rise in comorbidities (presence of diseases unrelated to being a kidney donor) over time. That is, hospitals are accepting more donors who are less healthy than in the past. By 2010 the overall proportion of comorbid conditions was still under 5%, but the trend is troubling.

image

Figure 1. Obesity, depression, chronic pulmonary disorders, hypertension, and hypothyroidism are all increasing among people accepted as living kidney donors

Rising obesity makes finding donors harder

The next paper (Abstract# 70) is entitled “Obesity Is a Major Barrier to Increasing Living Kidney Donation in the United States.” The study was led by  Zoe Stewart at University of Iowa Hospitals and Clinics, She examined two years of data from a Midwest hospital (presumably the one she works at) to determine the demographic characteristics (age, gender, ethnicity, biological relationship, obesity measured as BMI, marital status, state residency, and education level).

There were a total of 450 potential donors during the two years. The first table shows the actual outcomes of potential donors. Notice that only 12% of potential donors end up actually donating. This reinforces the message that patients should not stop looking for a donor after finding the first one. They must continue the search until the transplant is complete.

Potential living kidney donor outcome Number Percent of total
Accepted and completed transplant   52   12%
Not transplanted
   Recipient ineligible or received transplant 121    27%
   Withdrew after evaluation started   84   19%
   Not accepted* 193   43%
Total 450 100%

*Major reasons for denial included: hypertension (10.2%), BMI>35 (9.6%), renal disease (6.2%), and cardiovascular disease (2.9%).

The second table shows the demographic differences between potential donors that were accepted and transplanted and those who were not. Statistically significant differences are highlighted.

Unfortunately, the table doesn’t shows the demographic differences for each type of potential donor that was not transplanted. Specifically, donors that were not accepted for medical reasons would be more likely to have high BMI than those who didn’t donate because the recipient received a transplant from another donor.

A few differences stick out.

  1. White, non-Hispanics are accepted at about twice the rate of African-Americans or Hispanics.
  2. Unrelated potential donors are less likely to be accepted than related donors. I speculate this may be because they are more likely to withdraw than related donors.
  3. Nondirected donors are accepted at three times the rate of directed donors. This is probably a self-selection bias. Typically, only very healthy individuals would consider becoming a nondirected donor.
  4. Out of state potential donors are more likely to be accepted than local ones. I speculate that this is because someone willing to travel to donate is less likely to withdraw.
  5. Potential donors with higher education are more likely to be accepted. Perhaps this is because people with higher levels of education are less likely to withdraw. But I speculate that education is a proxy variable for two other factors. Education level is correlated with ethnicity (whites more likely to have gone to college) and with income (which is correlated with better ability to take time off from work and with greater access to healthcare insurance coverage).
Demographics of living donor candidate Accepted and transplanted (N=52) Not accepted (N=398) Acceptance rate
Age 39.9 yr 42.2 yr   –
Gender
   Male 40% 34% 13%
   Female 60% 66% 11%
Ethnicity
   White 94% 88% 12%
   African-American   4%   8%   6%
   Asian    –   0.5%   –
   Hispanic, any race    2%   3.5%   7%
Mean BMI 25.9 28.9   –
Relationship
   Related 58% 54.5% 12%
   Unrelated 37% 44% 10%
   Nondirected   6%   1.5% 34%
Marital status
   Married 61.5% 59% 12%
   Single 27% 27% 11%
   Divorced 11.5% 12% 11%
   Widowed   2%   –
State residency
   Resident >63% 72% 10%
   Nonresident 37% 28% 15%
Education
   < High school   2%   3%   8%
   High school 27% 30% 10%
   Some college 23% 27% 10%
   Associates degree   8% 10% 9%
   Bachelors degree 26% 22% 14%
   Graduate degree 12%   7% 18%

Cigarette smoking in donors leads to lower graft survival

A paper (Abstract #71) by S. Waits et al. at the University of Michigan entitled “Cigarette Smoking in Living Kidney Donors and Graft Survival” shows that people who smoke hurt not only their own health but also reduce the graft survival of kidneys they donate. A study of 635 living kidney transplants showed that 26% of donors smoked within the year prior to transplant. A Kaplan-Meier survival analysis estimated that 5 years and 10 years after transplant, patients who received a kidney from a smoker had a 10% higher chance of losing the graft than those who received a kidney from a nonsmoker.

image

Figure 2. Patients who receive a transplant from a donor who smokes were 10% more likely to lose the graft

It is better to get an older living donor now rather than wait for standard criteria deceased donor

One of the most difficult decisions that kidney patients and their medical staff must make is whether to accept a transplant from an older donor or wait for a younger deceased donor. An analysis (Abstract 72) by R. Sapir-Pichhadze and colleagues at the University of Toronto shows that a 40-year-old dialysis patient receiving a live donor transplant from an 60 year-old living donor can achieve to the same quality adjusted life expectancy (QALE) as waiting for a 30 year-old deceased donor kidney.

The study was conducted using a probabilistic Markov model.

My only comment here is that in theory it would be possible to use a kidney exchange to better match the age of patients and donors. Since there is such a shortage of donor organs, having the older living donor participate in the exchange would increase the total number of transplants performed.

Potential living donors with prediabetic condition are acceptable

Some good news for patients whose potential donor is prediabetic. A study (Abstract 73) by S. Shandran and colleagues at Univ. California San Francisco compared 45 prediabetic donors with 45 normal controls from 1996 to 2007 and found little difference in outcomes. The controls were matched for similar medical characteristics including family history of diabetes.

The mean age of both group of donors at the time of donation was about 47 years. At 30 days after donation both groups had a mean eGFR of about 60 ml/min. The main difference was the mean fasting plasma glucose was 109 mg/dl for the prediabetic group compared to 87 for the controls.

The follow-up study occurred a mean of 10 years after donation. For the original prediabetic group, the mean fasting plasma glucose was now 104.7 mg/dl with only 3 donors (7%) over 125 mg/dl. Only 7 (16%) of the prediabetic donors developed diabetes compared to 1 (2%) of the controls. Their eGFR was 70.7 compared to 67.3 for the controls.

Small donors lead to worse kidney function

The final paper of the session (Abstract 74) looks at the effect of small donor size and donor-to-recipient size mismatch on recipient kidney function. We know that many surgeons reject small donors because they are afraid that poor outcomes will result, but there is very little data on it.

This study was conducted by H. Khamash and colleagues at the Mayo Clinic in Phoenix, Arizona. It was a retrospective study of 579 donor recipient pairs from July 2003 to November 2010, excluding repeat or multiorgan transplants, those with positive crossmatch or presence of DSA, or those with early graft loss or death with functioning graft.

Using an unspecified multivariate analysis, the study found that smaller donor size (defines as body surface area <1.7m^2) older donors (defined as donor more than 10 years older than recipient), and lower donor eGFR (defined as under 40 ml/min) independently associated with lower GFR at one year post living donor kidney transplant. Thus, donor size should continue to be considered a factor when assessing the desirability of a donor for transplant.