ACOT Advocacy

ACOT meeting – er- teleconference on May 15. Attend!

From the official email (meetings are open to the public):


You’re invited to attend The U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Division of Transplantation (DoT) Advisory Committee on Organ Transplantation (ACOT) Virtual Meeting on Thursday, May 15, 2014 from 10:00 a.m. to 4:00 p.m. Eastern Time.

To attend register online at: by May 14, 2014.

After you register you should receive an automated registration confirmation email with call-in instructions. If you do not receive this please contact me at the information below to confirm your registration.

The website will also include the agenda and other resources for the Virtual Meeting.

Thank you and we look forward to your participation!


Unfortunately, the agenda is not posted yet, so keep checking the page.

ACOT Living Kidney Donor

Living Donors, Paired Kidney Donation, & Funding, Part III

See Parts I and II to keep up with the conversation….


Segev and the Kidney Paired Donation Workgroup detailed all the aforementioned supposed ‘extra’ expenses to KPD to set the foundation for their big request: money. And not just any money, but a ‘fee’ paid by the federal government, Medicare and Medicaid, and private insurance companies (which really means us, the consumer). They envision another contractor like OPTN or SRTR, only this one will administer a national kidney paired donation program.

The reason Segev and company need to ask for the above is because when NOTA 1984 established OPTN, a taxpayer (and private insurance company) funded organization, it was to manage a national DECEASED DONOR transplant system. Not living donation. And not living paired donation (such a thing didn’t exist then). At the time, the various facets of the federal government believed that if deceased donation was maximized (which hasn’t happened), the need for donor organs would be met. But they also knew it would be squicky for the government to financially support a transplant system that involved taking major organs from healthy, living people. Especially when we had no idea how taking a kidney from someone affects their health in the long-term.

So proposing that the living, breathing people involved in kidney paired donation be treated like cadaver donors is a bit – well – unsettling. To be sure, a couple of voices in the room (on the phone?) were squawking that such a thing was ‘allocation’ and well within the bounds of OPTN’s purpose, but nowhere in NOTA or any other piece of transplant legislation does allocation refer to living donors. Even though OPTN has decided that they can and will allocate non-directed donors, that doesn’t mean such a practice couldn’t be legally challenged. It just never has.

But I was bothered by the kidney paired donation workgroup’s recommendation that the public support a national KPD program for another reason.

Currently, living kidney donors comprise approximately 6000 transplants every year in the US. This means that since 1988, nearly 117,000 people have compromised themselves to help a person with end-stage renal disease*. During all that time, the federal government (aka the public) has funded a 10-year registry for transplant recipients, to track their health and well-being. But it wasn’t until 1994 that anyone collected any identifying information on living donors at all. And i it wasn’t until 2000 that the Secretary of Health mandated that transplant centers report one-year of follow-up on all their living donors.

A transplant center was only required to report a living donor’s status to receive credit from OPTN, but a presentation at the summer 2012 ACOT meeting revealed that 35% of kidney donors were still marked ‘lost’. One year post-donation, U.S. transplant centers had no idea if more than one-third of their kidney donors were alive or dead.

The transplant industry’s collective excuse for this non-compliance and negligence was that it was an ‘unfunded mandate’. They simply had no money, they insisted, to make sure that living donors, the people who provided the treatment for their end-stage renal disease patients and made their surgeons and facilities a tidy profit meanwhile, were cared for properly.

Yet not once in those 12 years did a single transplant center or physician suggest that public money be used to ensure transplant centers’ compliance with the mandate. No one has ever suggested that the same infrastructure used to track and collect data on transplant recipients be applied toward living organ donors. By all appearances, locating funding for a living donor registry has never, ever been a consideration.

But they have no problem soliciting the federal government and the American public for money to run a program that has, so far, resulted in a maximum of 600 transplants per year.


I wish I could say that was the only insult the workgroup’s presenters threw in living donors’ faces.


Stay tuned for Part IV (the last one, I swear!)



*there were living kidney donors from 1954-1987 but those numbers are estimates and I don’t have them memorized or on-hand.



ACOT Living Donor Risks Living Kidney Donor

How Kidney Paired Donation Affects ALL Living Kidney Donors

If you haven’t already, you’ll want to see my prior post wherein I set the stage for why transplants aren’t necessarily cheaper than dialysis. (and PS I failed to mention the growing number of older folks being diagnosed with end-stage renal disease who are choosing not to have any treatment at all.)

Dissecting that explanation matters because as of this past week’s ACOT meeting, a practice that is supposed to be cost-effective (kidney paired donation) suddenly has expenses above and beyond directed living kidney donation.

See slide below:

KPD costs


According to the kidney paired donation workgroup, which includes Dorry Segev, whom I’ve written about before, the above are fees specifically related to kidney paired donation. My observations/explanations:


1. Many would-be kidney transplant recipients have multiple prospective living kidney donors, especially those that publicly solicit (with encouragement from transplant centers). This not something unique to kidney paired donation.

2. NDD = Non-directed donor. The few folks that present themselves as living kidney donors without an intended recipient. The transplant centers tend to use them in chains rather than to facilitate just one transplant – more bang for the buck, I guess? I’ll give them this one.

3. This refers to the fact that while blood type and HLA (antibody) testing only needs to happen once, every possible donor-recipient pair must be checked for sensitivity. In other words, drops of the prospective living kidney donor’s blood must be mixed with the recipient’s blood to see if the recipient’s antibodies will attack it as foreign, signifying the possibility of rejection. This is definitely an added expense

4. Aren’t there already administrative costs to running a hospital? A transplant program? A living donor transplant program? Without some real stats in front of me, I’m not confident running pairs/chains really adds to the burden.

5. This assumes an outside entity will coordinate the entire kidney paired donation program, which would, of course, require employees, infrastructure and the like. Theoretically more than what already exist in the various KPD programs already functioning around the country. Again, debatable.

6. If the kidney donor and recipient are not in the same facility, the kidney must be shipped to the recipient. Except, of course, that deceased donor organs are shipped all the time. And that sometimes one-to-one directed living donor transplants are done at different hospitals too, necessitating a traveling kidney. <- Of course, this is one of the reasons why transplant centers encourage kidney donors to donate at the same center as the recipient. Some of them flat-out lie and tell the LKD it’s not possible to have the surgeries at different hospitals.

7. I’m sorry, what? Surgeons performing the live donor nephrectomy get paid. Are they insinuating that a surgeon should get paid more for participating in a swap/chain? I don’t understand this at all.

8. Yes, because living donors engaged in a traditional directed donation NEVER have expenses related to complications or follow-up.


Tune in to Part III for a prominent appearance by #8…

ACOT Living Kidney Donor Organ Allocation

Kidney Paired Donation Workgroup Recommendation (Updated)

UPDATED March 8: See below the graphic.


Here’s the final recommendation from the Kidney Paired Donation Work Group recommendation as presented at the ACOT meeting today:

KPD recommendation





Update March 8, 2013: I posted this graphic yesterday during the ACOT meeting while I was live-tweeting. I wanted my twitter followers to access the information as soon as possible. However, I think it’s important to understand why this recommendation is important and how it affects all living donors.

Kidney Paired Donation (KPD) encompasses everything from a simple swap to a multiple transplant chain. Generally, the exchanges originate in one of two ways: 1. a prospective living kidney donor is found to be incompatible to an intended recipient, or 2. a person decides they want to donate a kidney but they have no intended recipient. Right now, the transactions take place within one center or across multiple centers. Standards, practice, policies and otherwise are determined by the participating hospitals, which is to say that we have a wild-west-anything-goes sort of thing happening, which leaves giant holes where protections and respect for living donors should be.

One of the transplant industry’s go-to statements is that transplants ‘save money’. Their reasoning is that the cost of a transplant is cheaper than a lifetime on dialysis. Oh, and because Medicare covers dialysis, transplants are saving ‘the taxpayers’ a truckload of money. Except:

A. not all transplant recipients are on dialysis at the time of transplant.

B. transplants are not cures, so the vast majority of recipients will need multiple transplants to achieve a ‘normal’ lifespan.

C. transplant recipients must take anti-rejections meds indefinitely, and those things are expensive (a quick web search cites numbers like $17,000-$19,000 per year or $1750 per month, or $10,000 in the first year).

D. Medicare Part D doesn’t allow the government to seek reduced rates for medications, so they’re paying full freight.

(I want to add an E here that says Medicare will only pay for immunosuppressants for three years if a recipient is not otherwise qualified to be on Medicare/Medicaid. While I can’t find a specific number, it’s well documented that a certain percentage of grafts are lost every year due a recipient’s inability to afford their antirejection drugs. That being said, the average age of end-stage renal disease diagnosis is 64.4 years old, per USRDS)


Finally, according to the Milliman Report, it costs approximately $1 million to get a person with end-stage renal disease to transplant. 


I’ve spelled all of this out not only because the transplant industry continues to insist that transplants are less expensive than dialysis, so utilizing willing but incompatible prospective living kidney donors is an all-over win situation, but because a portion of the Kidney Paired Donation Workgroup’s presentation and recommendation involves money.

Because now kidney paired donation is suddenly more expensive.


But for that, and the rest of the explanation,you’ll have to see Part II


ACOT Follow-Up Informed Consent Living Kidney Donor OPTN

Be at the next ACOT meeting; handouts on new Living Donor requirements

The March 7, 2013 ACOT meeting is a teleconference, and like all ACOT meetings, open to the public. While the agenda isn’t available yet, living donation and living donor issues always make an appearance.

So, if you want to listen in and learn what’s happening in the U.S. transplant industry, you can register here:

Meanwhile, if you want to see the materials from the latest OPTN webninar on the new Living Donor requirements, you can get those here: