Advocacy Living Donor Protections Living Donor Research Living Kidney Donor

How to Eliminate Some Living Donation Related Costs

Note: Typical with most recently published studies, I’m only able to see the abstract for this one.


Authors collected info from 194 living kidney donors enrolled in the KDOC study.

“Most LKDs (n=187, 96%) reported one or more direct costs, including ground transportation (80%), healthcare (24%), lodging (17%) and air transportation (14%)…..Higher total costs were significantly associated with longer distance traveled to the transplant center”


As I’ve discussed at length, not only is it not medically necessary for a potential living kidney donor to have their procedure at the same transplant center as their recipient, it can also be detrimental for the kidney donor’s care, recovery and treatment. Transplant centers prefer both parties to be at the same hospital because –

A. It’s convenient for them.

B. Variations in how transplant centers evaluate potential living donors results in a quality control issue. Transplant center 1 might miss something that transplant center 2 deems exclusionary, etc

C. Transplant centers are paid by the procedure, so having folks at different hospitals splits the revenue pie.

D. If the kidney donor and transplant recipient live in different states, there can be insurance and billing conflicts and issues.


How to fix the problem (for the living donor, at least):

1. Put *all* treatment for ESRD and kidney failure under Medicare (this would delight private insurance companies btw), or at minimum, have Medicare assume all healthcare expenses if the prospective living donor and would-be recipient reside in different states to circumvent the state insurance regulation obstacles.

2. Completely standardize the living donor evaluation and selection process.

3. Require insurance companies or transplant centers to pay for the living donor’s travel and lodging expenses. (This, however, would still leave the LKD at risk. S/he must return home at some point and could need further treatment)


“Few LKDs reported receiving financial support from the transplant candidate (6%), transplant candidate’s family (3%), a nonprofit organization (3%), the National Living Donor Assistance Center (7%), or transplant center (3%).”

Donation is an act of generosity, which causes the prospective LKD to bear the burden (in this case financial) by themselves. Transplant candidates (aka would-be recipients) are taught, in a million subtle ways, to passively accept the sacrifice a donor is making on their behalf. Maybe we need to change the dialogue from one of recipient entitlement to one of recipient responsibility? Rather than expecting the government (NLDAC) or a nonprofit to help with living donation related expenses, transplant candidates should be prepared to assume these costs. If a would-be recipient is unable or unwilling to do, s/he could continue on dialysis and wait until a deceased donor organ becomes available.

If this idea offends your sense of fairness (Poor people won’t get living donor kidneys!), I hear you, but it’s also the reality of how our healthcare system works in general. If someone can’t afford a treatment or medication, that person can’t have that treatment or medication. Is that unfair? Certainly. But then again, one could argue, so is asking another person to act as your medical supply.

Rodrigue, J., Schold, J., Morrissey, P., Whiting, J., Vella, J., Kayler, L., Katz, D., Jones, J., Kaplan, B., Fleishman, A., Pavlakis, M., Mandelbrot, D., & , . (2015). Predonation Direct and Indirect Costs Incurred by Adults Who Donated a Kidney: Findings From the KDOC Study American Journal of Transplantation DOI: 10.1111/ajt.13286

Living Donor Research Living Kidney Donor

Living Kidney Donors and Insurance Issues – Again

Emphasis mine, of course:


Among 395 donors who changed or initiated health insurance after donation, 27 (7%) reported difficulty; among those who reported difficulty, 15 were denied altogether, 12 were charged a higher premium and 8 were told they had a preexisting condition because they were kidney donors.

Among 186 donors who changed or initiated life insurance after donation, 46 (25%) reported difficulty; among those who reported difficulty, 23 were denied altogether, 27 were charged a higher premium and 17 were told they had a preexisting condition because they were kidney donors


While the ACA prohibits denial of coverage based on a pre-existing condition, it doesn’t mean a living donor couldn’t end up paying much, much higher premiums.



Boyarsky BJ, Massie AB, Alejo JL, Van Arendonk KJ, Wildonger S, Garonzik-Wang JM, Montgomery RA, Deshpande NA, Muzaale AD, & Segev DL (2014). Experiences Obtaining Insurance After Live Kidney Donation. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons PMID: 25041695

CMS - Medicare Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

Living Kidney Donors Still Can’t Obtain Health Insurance

The NY Times blog took some time to present yet another way we living living donors are being screwed by our own generosity: some of us can’t get health insurance.

(Read the article here)


What’s sad is that this problem isn’t new. NATCO (the self-proclaimed ‘organization for transplant offiicials’) issued a statement in May 2006, and the fact they felt compelled to do says the issue was pretty significant then.

And OPTN’s own Informed Consent guidance document recommends prospective living donors be informed they may have difficulty obtaining health or life insurance post-donation.


A provision in the Affordable Care Act, when it is implemented, will prohibit insurers from denying coverage based on pre-existing conditions. However, this will not stop insurance companies from pushing living kidney donors into the high-risk pool, forcing them to pay more for less coverage.


Some observations on the article itself (you know I had to):

– the writer uses the inflated wait list numbers instead of the ‘active’.


In Mr. Royer’s case, tests found a high creatinine level in his blood, which was interpreted to mean that Mr. Royer had kidney damage. Dr. Connaire told the Blue Cross panel that heard Mr. Royer’s second appeal that creatinine levels are high in most, if not all, kidney donors.


How many prospective living kidney donors are told their post-donation creatinine will be considered ‘high’? Conduct a random search on transplant centers’ website and tell me if it’s ever mentioned. I’ve spoken to quite a few LKDs (not to mention the survey takers) and it’s never come up. We’re all lead to believe we can lose 50% of nephrons and we’ll continue to be just as healthy as before.


“The literature says that if you have kidney problems you’ll have more heart disease, but taking a kidney out in a situation where everything is fine is a very different story,” said Dr. Connie L. Davis, who is chairwoman of the living donor committee of the Organ Procurement and Transplantation Network. “It does not have the same implications.”


Really? I’d like to see her proof of that, considering we have NO long-term comprehensive data on living donors at all.

Let’s see:

Garg’s study was Canadian where they have universal health care and different lifestyle than the US. And it only covered a decade as opposed to twenty years or more.

– Two published letters retorting Garg are less than flattering about his conclusions.


New research, not yet published, suggests the risk of developing kidney failure is even smaller for living kidney donors than for the general population, Ibrahim said.

This is the same Ibrahim that used an incorrect comparison cohort in single-center study which didn’t follow living kidney donors long-term, whose subjects were overwhelmingly white, and who sort of hid that only a tiny percentage of the entire sample underwent actual physicals?

Hm. I think we can see why I’m more than a little skeptical. After all, U of Minnesota makes big bucks from their living kidney donor transplant program.


And here’s my favorite:

…long-term studies have found donors live as long as other healthy people. One study reported that donors live even longer.


First off, the writer is referring to the Segev study, which is based on a ‘woefully inadequate’ and ‘useless’ database (that would be OPTN’s and the quoted terms are from OPTN’s own data task force in 2009). Secondly, NOT LONG-TERM. Thirdly, the abstract linked in the article has a small sample size, in a country where they have universal health care and a different lifestyle than the US. Not to mention, we have no idea how those LDs were evaluated and selected.


Meanwhile, Mjoen in 2011, who did follow his kidney donors into old-age, and used the correct comparison cohort, found that once living kidney donors hit their 60s and 70s, we started dying off at a faster rate than our two-kidneyed cohorts.


Do I think we should be discriminated against by insurance companies? Of course not. But do I think health insurance companies should operate on a for-profit paradigm? NO.


The ironic part of this entire discussion is that in the 1972 Social Security Act, Section 1881, wherein Congress created a Medicare benefit for those diagnosed with end-stage renal disease, they also granted benefits to their living donors. Of course, Congress (nor CMS) ever thought living donors would eventually compose nearly half the kidneys transplants every year. Consequently, they’ve kept that little gem under their proverbial hats.

So maybe what Mr. Royer needs to do, instead of talking to the NY Times, is contact a Medicare lawyer and fight not just for his benefit, but for the one owed to all living kidney donors.








Advocacy Living Donor Protections Living Donor Research Living Donor Risks Living Kidney Donor

State of Living Kidney Donation in Europe

Like all such academically published articles, there’s good and bad.


The good?

Admitting that transplant centers benefit financially and otherwise from living kidney donor transplants:

We must also mention that the higher the number of transplantations, the better the reputation for the transplant centre. Furthermore, in some centres, the number of transplantations is so high that it is responsible for a substantial part of the hospital budget. This income can be used for the benefit of the centre, the surgeons and/or the transplant physicians. In other words, if a centre performs fewer transplantations, it may be inclined to reduce the number of physicians or other personnel involved in the field of transplantation.


And the scheduling convenience:

..the operation can be planned in advance, so everyone involved can plan ahead and look for the most beneficial time for the transplantation…It is no surprise that every surgeon and transplant physician prefers transplantation during daytime


Probably my favorite is this little bit (emphasis mine):

There should be no doubt that a living donation is a surgical procedure and carries some small but inherent risks. Thus, a living donor is certainly better off if he does not donate a kidney.


Believe me, you’ll never hear an American transplant physician admit any of the above, especially the last.


But then there’s the bad:

We now know that an increase in creatinine and the development of hypertension ranks among the most important risk factors for cardiovascular events and, thus, cardiovascular death. After donation, a number of donors develop an elevated creatinine, which could be associated with an increased cardiovascular mortality. At present, we cannot define a creatinine threshold above which a donation is associated with an increased cardiovascular mortality.


And why can’t they define a creatinine threshold? Because they never bothered to track or study living kidney donors in any sort of long-term or comprehensive fashion.

But at least he admits it:

Even for younger donors, the follow-up is limited to 5- or 15-year data, which is not particularly benficial as life expectancy in modern societies ranges between 75 and 85, implying a minimum follow-up of 20–30 years is necessary in order to offer meaningful data.


On to hypertension (emphasis mine):

There is no question that an increasing number of donors suffer from hypertension. This is likely attributable to donation although the rate of hypertension does not seem to be higher than in the general population. Furthermore, nowadays, imperfect donors are accepted and some of them have hypertension even before donation. 

The major question remains what to do in the case of more than one anti-hypertensive drug in a potential donor with well-controlled hypertension and no apparent side effects. As hypertension will certainly worsen after donation, this may be decided on a case to case basis in consideration of additional risk factors or diseases in the donor as well as the age of the donor. The older the donor, the more likely there will be no reduction in overall survival due to donation, so that an otherwise healthy donor of 70 years of age may have no real risk for donation, while a 30-year-old may. However, this is more speculation…


And proteinuria:

The consensus on proteinuria is much more advanced. Here, most guidelines suggest to restrict donation to people with a proteinuria of <300 mg/day. Although this threshold is somewhat arbitrary, a higher level of proteinuria clearly is associated with an increase risk of developing a kidney disease. However, we cannot rule out that such a threshold is too lax for younger donors and too strict for older ones as it will take some time to progress from low proteinuria to advanced kidney disease with all of its implications


The important part here, imo, is the admission that a one-size-fits-all template of living donor acceptability isn’t in the best interest of any living kidney donor.


And here comes the insurance issue:

in Germany, for example, living donation is considered a cosmetic operation, so that costs for the treatment of
problems arising from donation long term such as hernia operation or even dialysis may not be covered.


And finances:

Furthermore, there may be financial damage to the donor by higher costs for insurances or loss of work or even a prolonged recovery


The correlation between deceased donation and living donation is crucial (emphasis mine again):

…we can observe that in countries with a high rate of postmortem donation, the rate of living donors is relatively low. In these countries, the acceptance of donors is more selective than in countries with a low rate of postmortem donors


It doesn’t take an investigative genius to notice that the transplant industry spends all of its time promoting living donation over deceased. Hell, I just ran into an article this morning where Johns Hopkins used a NIH (national institute of health) grant to teach friends and family members how to be kidney brokers for their would-be recipient loved ones. They gave them six months of training and business cards and everything*.

And that little tale directly refers to this sentence in Heemnn’s study:

As the transplant physician may have his own agenda and is likely to be in favour of donation, and the potential donor may feel some emotional pressure,




I might kiss the researchers for this one (my emphasis):

Today, the steps being taken to strengthen donor rights are somewhat small and half-hearted.


The only step taken by the EU is the implementation of a donor registry. However, it has not been explicitly stated for what period a donor has to be followed. In some countries, the followup stops with release from the hospital, in some after 1, 2 or 3 years. Only in very few countries are donors mandatorily followed for life. As the overall numbers are small, it is unlikely that, with such perfunctory measures, we will be able to adequately advise transplant centres and donors about the real risk of donation in the near future.

Sad to know that the US and Europe have one thing in common: treating their living kidney donors badly.


But I think this says it all:

At present, there is not even a public acknowledgement of the society to demonstrate the worth of donation.

Believe me, cries of “But you’re a HERO” don’t count.


*Yet living donors can’t get a funded registry??

Heemann, U., & Renders, L. (2012). State of living kidney donation in Europe Nephrology Dialysis Transplantation DOI: 10.1093/ndt/gfs144

Ethical Considerations Living Donor Risks Living Kidney Donor

Uproar Over Denied Kidney Transplant Completely Overlooks the Prospective Living Donor

The story of Jesus Navarro, the undocumented immigrant (aka illegal resident-slash-alien, whatever term seems to be in vogue these days), who was denied a kidney transplant due to his not-legal residential status and uncertain ability to obtain follow-up care and anti-rejection medications, has been big news of late. I chose not to comment because it seemed like a futile effort – and because I’ve been busy training poll workers not to bork the upcoming election in March.

But then I got an email from about a petition to help Mr. Navarro obtain his transplant. I wouldn’t have been bothered except for the misinformation and oh-so-constant theme.

Here’s the first paragraph:

Jesus Navarro could die without a kidney transplant. His wife is a match, she wants to donate her kidney to save her husband’s life, and Jesus even has health insurance to cover the transplant.


And here was my response to (which will probably go into the junk/spam folder or be returned as undeliverable):

I would encourage more research on this matter. Mr. Navarro lost his job and consequently his private insurance (he lost it because his company was caught up in an immigration sweep):

It also might serve your organization well to understand that a transplant is not a cure, and without proper medical follow-up (including funds for anti-rejection meds, which are very expensive), Mr. Navarro’s body will reject the transplanted kidney and he will be back where he started.

Mr. Navarro’s wife has offered to be his living kidney donor, yet no media outlet (including has asked whether she has employment or private insurance. No one has the least bit of concern that 4.4 living kidney donors die each year in the US within 12 months of surgery, 20% experience complications, 20-30% suffer from depression, anxiety and PTSD, and not a single US transplant center offers aftercare or support.

The public (and media) perception is that kidneys are like pints of blood when in fact, there are NO national standards of living donor evaluation, selection or treatment, and there is NO data on living donors’ health or well-being. Hard to believe, I know, but the first living kidney donor transplant was performed in 1954, no identifying information on living donors was collected until 1994, and even though the Sec of Health mandated one year of follow-up on all living donors in 2000 (two yrs as of 2006), 30% of living donors are reported ‘lost’ by one year and NO transplant programs have been penalized for non-compliance.

So while everyone is in an uproar about Mr. Navarro being denied a kidney transplant in the US (when he could receive one in Mexico), no one has bothered to throw one errant thought to what will happen to his wife, or any other of the 6600 people in the US who become living donors every year. Which is the bigger atrocity?


What I didn’t say and could have is that Mr. Navarro now has a ‘sponsor’ willing to pay all of his medical bills. Mr. Kagan is a kidney recipient himself, WHOSE DONOR WAS AN ILLEGAL ALIEN (undocumented immigrant, whatever).

To quote:

“A person … had absolutely nothing and was willing to give his kidney to me,” said Kagan, the co-owner of a Berkeley technology firm.

It’s interesting that Mr. Kagan’s living kidney donor was A. not a relative and B. in the country illegally. He does not name this person, and this person has yet to come forward in any way or participate in Mr. Kagan’s vocal support for Mr. Navarro. Why is that?

– Is he no longer in the country?
– Did he receive payment for the kidney?
– Is he dead??

For the record, I have no way of knowing any of these things, but Mr. Kagan’s bias on this issue is pretty evident, and it’s not in the direction of ensuring any living donor is protected in any way.

Of course, he’s not alone. No one involved in this scenario or discussion appears to give one whit about what happens to Mrs. Navarro. The only goal is to get Mr. Navarro his precious transplant.

Unfortunately, what else is new?