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.








Add Your Thoughts