Advocacy Potpourri

Why Change Happens – And Why It Doesn’t

In light of Nelson Mandela’s passing, I wanted to share two recent anecdotes from my life that illustrate why needed change does and does not occur.

Last night, I attended a township zoning board meeting to voice my opposition to a proposed zoning change adjacent to my neighborhood. When the meeting began, not a seat was vacant, and for the next two hours, I listened as my neighbors took the podium and described their affection for our neighborhood. More so, how they feared this proposed zoning change would negatively impact our quality of life.

It may sound corny, but as they spoke of mothers jogging through the streets with strollers (we have no sidewalks), kids riding bikes and trick or treating, and dog humans picking up their pooch’s poo, I got a little choked up. I was proud of my neighbors for realizing how special our modest little corner of the world is, and even more proud they took time out of their busy schedules to show up at a municipal meeting to fight something they viewed as a threat to it. As opposed to what we read, see, and hear on a daily basis, it was a great demonstration of what democracy is supposed to be.

In contrast:

I’ve been doing this living donor advocacy thing for five years now. During that time, I’ve developed relationships with a handful of people I rely on for knowledge, corroboration and advice. Publicly however, I’ve always been pretty much on my own. In the last year, a prominent living donor related list-serv was shuttered with next to no advance warning. Many members were shocked, angry and betrayed by this move, but the sponsor of the list-serv was unmoved by their protests*. Anyway, there was some talk of someone else picking up the mantle and relaunching the list-serv. I volunteered my server space but was emphatic that I wouldn’t and couldn’t run it alone. A couple of people agreed to help me out.

Months later (you had to know that was coming, right?), I was approached by one of these folks, asking about the status of the list and had there been a lot of subscribers? I informed her I’d been very busy (training people for the election = $$; acting in a theater production, etc), and that I’d had no time to promote the list (thought it was set up). I also told her I was exhausted from being a five-year, one-woman show and I needed her help.

Her response: Well, if you’re tired, maybe we should drop it.

Instead of saying, “Hey, I believe this is an important project, tell me what I can do”, this person (in essence) said: Oh. Well, if you’re not going to carry the burden then I guess it won’t happen.

This, folks, is why things don’t improve despite people’s proclamations that they should. Because theory and philosophy are easy, but work is dirty, and icky and frankly – work. And gee, don’t I have enough on my plate with my family/job/dog/vacation/bills/etc? I mean, aren’t there people who get *paid* to do that sort of thing???

No. No, there are not. I’ve been here for five years with every cost coming out of my threadbare pocket, and a donation button on the website that no one has bothered to click. A simple request of “Hey, help me get this email list-serv you want so badly off the ground” is met with “Uh, can’t you do that?”

So the next time The System (whatever system) bites you in the ass, ask yourself: When was the last time I did something to actively make the world a better place?

Then roll up your damned sleeves and make it happen.


*When the National Kidney Foundation tries to tell the world they care about living donors, remember this.

Living Kidney Donor

Hospital Contaminates Donor Kidney

A wife donates her kidney to her husband* at North Shore University Hospital, and while both are under anesthesia, “an unidentified fluid” dropped from the ceiling into the basic holding the wife’s now removed kidney. The kidney was cleansed, examined and who-knows-what-else for “hours”, and by the time it was implanted in the husband, it “barely functioned”.

So sayeth the surgeon’s report.

Predictably, the graft failed shortly afterward. So, Mr. Johnson still needs a transplant, and Mrs. Johnson has to spend the rest of her life dealing with the risks of having one-kidney.

The hospital, remarkably enough, are denying *any* of this happened, despite the surgeon’s report and the detailed notes about the attempted recovery of the contaminated kidney. *Vehemently* denying it, I might add; as if the Johnson’s and their lawyers made up the story out of thin air.

Welcome, my friends, to the world of medical malpractice.

Full article:

*Who had Type 2 diabetes and hypertension. What are the two leading causes of kidney failure in the U.S.? Ding-Ding!

Advocacy Living Donor Research Living Donor Risks Living Kidney Donor

Hey Fatties, Lose Weight So We Can Have Your Kidney Already!

Saw this headline this morning, the official press release from North Shore-Long Island Jewish (LIJ) Health System:

“Researchers discover that obesity hinders kidney donation” (here)


…of 104 potential living kidney donors, 23 (22 percent) donors were classified as morbidly obese, only three (13 percent) of whom were able to successfully lose weight and donate their kidney…

Morbidly obese patients are generally excluded as [living] organ donors given their increased risk for complications during operation and the development of chronic conditions linked to obesity (i.e., type 2 diabetes, heart disease, etc.).


Sounds reasonable, enough. But then…

A quote from one of the researchers, Mala Sachdeva, MD, assistant professor of medicine at the Hofstra North Shore-LIJ School of Medicine and researcher at the Feinstein Institute for Medical Research (emphasis mine):

“As a next step, we must conduct larger studies that assess how vast a problem this is on a national level and determine how best to expand our living donor pool for kidney transplantation…” 


Did she just say that obesity is a problem not because of correlated health risks (and public health consequences) but because it prevents her and her compatriots from harvesting kidneys?


“Due to kidney shortages, there must be tangible efforts made to increase the donor pool. Perhaps potential donors who are excluded from donation due to their high BMI should participate in more stringent weight loss programs, check in much more regularly at their transplant center for follow ups, and even join social support groups as a means of motivation. Something needs to be done to increase the number of live donors…


Yeah, that’s exactly what she said.


I browse for different coverage of the same study, and find this:

“Obesity May Contribute to Organ Shortage” (here)


The first line:

The pool of potential living kidney donors may be shrinking because of the national obesity “epidemic,” researchers said here.


Less offensive, but pretty much the same thing.


This time we’re treated to a quote from the President of the National Kidney Foundation, the same organization who has been trying to convince the world their sole priority isn’t just getting more kidneys for transplants, but that they’re concerned about living kidney donors’ well-being too:

“As the kidney transplant waiting list grows, there is a great need for living donors,” [Lynda] Szczech said in the statement. “As a community, we need to identify ways to overcome this barrier {obesity] so that we can increase our donor pool and end the wait for transplant.”


So let’s say these folks lose enough weight to pony up a kidney. 80% will gain it back within 2 years. 2/3 gain back more within 4/5 years then they initially lost*.

And you know what’s worse than a morbidly obese potential kidney donor? A morbidly obese person with compromised kidney function and no renal reserve.

Are Sachdeva and Szczech (and their ilk) willing to monitor these kidney donors for the rest of their lives? Will they commit their resources to ensuring the donors maintain their weight, and their health, so they don’t die an early death due to diabetes, heart disease or kidney failure?

Considering the 60 year history of living donor neglect in the US, it’s safe to say probably not.


I’ve often wondered if members of the transplant industry realize how asinine they sound when they make statements like this. Like the folks who’ve spent their entire (indeterminately long) lives in the back hills of some god-forsaken state, and who consequently spew racial and ethnic slurs like the civil rights movement never happened, are these doctors so isolated from the consequences of their actions, so privileged, that they see nothing wrong with reducing the public to nothing more than walking kidney incubators?

Well – when the sentiments are included in widely distributed press releases, I’d say unfortunately so.


*google for source material



Living Donor Misinformation Living Donor Protections

Misinformation and Mixed Message from Someone Who Should Know Better

At the above link, Dr. Cooper, a transplant surgeon in Maryland and the head of the OPTN Living Donor Committee, waxes poetic on why living donation rates have decreased over the past five years, citing barriers such as out-of-pocket expenses and insurance issues.

His first error, however resides in this statement:

no coverage exists beyond three to six months from donation even for conditions that may be related to the donation.

Wrong. 42 USC 1399 rr, aka the Social Security Act 1881, passed in 1972 gave living donors a Medicare benefit, to whit:

Any individual who donates a kidney for transplant surgery shall be entitled to benefits… Reimbursement for the reasonable expenses incurred by such an individual with respect to a kidney donation shall be made…for all reasonable preparatory, operation, and post-operation recovery expenses associated with such donation… Payments for post-operation recovery expenses shall be limited to the actual period of recovery.

However, in 1974, the director of the SSA insisted that transplant centers send all living donor-related bills to a recipient’s insurance (gotta keep those Medicare costs down). Since private insurance provides a much higher reimbursement than Medicare, transplant centers happily complied. Meanwhile, living donors are unaware of this benefit, and people like Dr. Cooper perpetuate the misnomer that it doesn’t exist, creating the very barriers he’s now protesting against.

Dr. Cooper then praises the National Kidney Foundation’s “end the wait!” initiative for addressing these problems, displaying its recommendations as examples:

– improve the outcomes of first transplants
– increase deceased donation
– make the donation system and processes more efficient and equitable, and increase living donation.

I’ve read and re-read these objectives multiple times and nowhere do I see anything that benefits living donors. Nothing about a living donor registry to FINALLY begin compiling comprehensive data on living donors to determine the true long-term effects; Nothing about improving Informed Consent; Nothing about mental health services; Nothing about aftercare. Dr. Cooper spends an entire essay trying to convince the reader that the safety and care of living donors are his first priority when his admiration of NKF’s goals reveals the wolf beneath the wool cloak, the man behind the curtain, and the true lizard countenance of the Visitors – like so many of his counterparts (including NKF), his primary concern is really about procuring more organs for would-be recipients, and coincidentally (or not) generating more revenue for his transplant center. This revelation is contradictory considering Dr. Cooper’s position with OPTN, and worse, disappointing to those of us trusted him to do the right thing.

Advocacy CMS - Medicare

Happy World Kidney Day

Today, over 100 kidney advocates will be meeting with congressional offices asking for support to extend Medicare coverage for immuno-suppressant medication for transplant recipients (S. 565). These medications must be taken for the life of the recipient, but Medicare currently only covers 36 months post-transplant.

Medicare spends $17,000 per year per recipient to maintain a transplant, but if it fails, Medicare will pay $71,000 per year per recipient for dialysis.


Now that I’ve done my duty as a transplant advocate, let me give you this little thought – if the National Kidney Foundation has admitted that living donors are part of their constituency, why haven’t they sent representatives to advocate for HR 218, the Living Donor Tax Credit Act?

Guess we’re not all that important.