Categories
Advocacy Living Donor Misinformation

Media Coverage of Living Donation

In a group (supposedly) for living organ donors, a person who serves as a kidney broker*, helping would-be recipients locate willing stranger donors, deluges the membership with the ‘happy’ donor stories so prolific in the news. One of the more recent quoted the kidney saying that donating ‘was no big deal’. I remarked with these stories do a huge disservice to all living donors, especially those who experienced problems post-donation.

Naturally, another person took issue with that, stating that the happy donors ‘are entitled to have their stories told’. When I pointed out that these stories are planted by the transplant centers to further their agenda of promoting living donation – well, let’s say she didn’t like that much either.

 

So I decided to conduct a brief experience: inventorying the US media’s coverage of living donation** as it comes through my google alerts. I’ll note –

A.  if the story is a happy one,

B. if the story contains a quote from a transplant professional (especially someone from the hospital, as opposed to a local OPO or kidney disease organization),

C. if the story addresses the possibilities of risk/complications in any way (especially if a statement relies on Segev or Ibrahim to mention LD life expectancy, or rates of kidney disease; spare kidney/live with one kidney; minimal risks/relatively safe; false info),

D. if the story gets any of the facts wrong

E. If the story promotes a specific transplant center

F. and if the story is pimps for money (donations, fundrasier).

 

July 18, 2013

1. New Jersey man’s high school crush to save his life with a liver donation: Geeky guy has crush on cool girl in high school. They reunite at 25-year high school reunion, get married two months later, and she gives him 2/3 of her liver.

“There is an up to 25% chance that she will get complications from the operation.”   No, there is a 40% chance of complications, says pretty much everyone. Oh and deaths are inevitable. The reporter gives no source for the statistic.

At the end of the story is a link for folks to donate to their medical bills.

 

July 19, 2013

2. Former Superintendent Gets New Kidney: Story centers on Cincinnati kidney transplant recipient’s life, with mention of his anonymous living kidney donor who “for now” wishes to remain anonymous. IOW, completely recipient-centered.

 

3Live liver donors could ease U.S. organ shortage crisis, adopted siblings show. Contains quote from an Organ Procurement Organization (OPO – the regional organization which is paid to allocate deceased donor organs) which the writer calls an ‘advocacy agency”. Quotes from a transplant surgeon. Promotes specific transplant center’s live liver donor transplant program.

“Overall, the risk of early death among live liver donors is about 1.7 cases per 1,000 donors, according to a 2012 paper led by Dr. Dorry Segev, a transplant expert at Johns Hopkins Medicine. There have been four deaths of living liver donors among the more than 4,300 transplants performed since 1999, according to OPTN.”

What is the definition of “early death”? Any death of a liver donor prior to what would be expected of a cohort-matched non-donor? Because no such data exists.

Also, there is plenty of evidence to prove that more than four deaths from live liver donation have occurred in the U.S. Why OPTN continues to perpetuate this lower, erroneous statistic is something only they can answer.

I also find it interesting the writer mentioned Mike Hurewitz’ 2002 death, but said nothing about Ryan Arnold and/or Paul Hawkes, both in 2010.

 

“For comparison, OPTN officials estimate that there were 30 deaths of living kidney donors between 1999 and 2011, out of more than 83,000 live donor transplants.”

Except that a slide from an official OPTN presentation states that 44 living kidney donors died in the U.S. in 2000-2009 within 12 months of surgery.

 

But both siblings are back to work and have resumed normal lives with their spouses and kids. Kilcup ran a half-marathon within three months of the swap.

And

Now, she’s become an advocate for live liver donation.

Absolutely no mention of the 40% live liver donor complication rate.

 

July 21, 2013

4. Wife to give husband a kidney. Despite the headline, the article details the husband-recipient’s travails with health issues and providers which eventually lead to the need for a kidney transplant. The wife, his soon-to-be living kidney donors, is mentioned as the “happy ending”.

Mentions the transplant center where surgery will take place.

Nothing about risks of living kidney donation.

 

June 22, 2013.

5. NINTH CIRCLE Hosts Benefit Show To Find Kidney Donor. Just what it sounds like, a Los Angeles band is having a show to “get as many people screened to become a donor and ultimately find someone who is a match for…” a fan.

I wonder if any of the band members have stepped up to be tested?

(It probably goes without saying, but since that’s the purpose of this post, I will: not a darn thing about process or risks of living kidney donation)

 

June 24, 2013.

6. Twist helps kidney donor save dad, husband. See my rundown here (yeah, this one was so bad it warranted an entire post of its own). No talk of the reality of living donation at all. University of Maryland Medical Center’s publicity for their paired donation program.

 

7. Social media helps link kidney donor and recipient with rare blood type. Fluffy article about public solicitation for a living kidney donor. No mention of anything related to living donor risks, process or otherwise. The procedure hasn’t happened yet.

But it did pimp a fundraiser (and link to it).

 

July 25, 2013.

8. Social media helps link kidney donor and recipient with rare blood type. What it sounds like. One sentence referring to recipient’s insurance paying ‘most’ of the costs, and LKD taking time off work after donation. Nothing else about risks, complications, or consequences.

Oh and a link to a fundraiser.

 

9Spokane pastor’s decision to give kidney leads to second match. Promotion of living donation via “God”.

Quote from transplant center’s Transplant Services Director regarding ‘advantages’ to living donation (for recipients, of course).

Quote from LKD about testing process, and early post-donation fatigue.

Nothing about risks of living donation.

Promotion of Sacred Heart’s program via living donor transplant statistics.

 

10. Facebook helps man find new kidney, hope for future. Professor’s kidneys fail, he has a transplant. Almost two decades later, he’s diagnosed with cancer [<- what the article doesn’t say is that anti-rejection meds greatly increase a person’s risk of cancer]. After the cancer treatment, he needs another transplant [<- second omission: certain drugs used in chemotherapy are nephrotoxic, meaning they can damage kidneys, causing them to fail.] One of his students solicits for him, and a woman responds and gives him kidney.

– many sentences about student’s new project to help other folks find kidneys – IOW promotion of living donation with no regard to donor protection. 

– Quote from transplant surgeon about the ‘need’ for kidneys, cites inflated wait list.

– surgeon also repeats lie from Segev & Ibrahim about living kidney donors’ lifespans.

 

July 27, 2013.

11. Man gets kidney from daughter, then granddaughter.

– Misconception spread by LKD grandaughter: “you can live with one kidney, so why not?” [How about this and this and this and this and this for reasons ‘why not’?]

– pimped specific transplant center.

– Quote from recipient which is erroneous and dangerous: “Becoming a donor is really not that dangerous, and the good it does, really outweighs the little risk,” Willie West said.

– no mention of living donation’s complications or risks

 

12. Local Teen Needs Kidney Transplant. Solicitation for adolescent boy in need of a kidney.

– no factual information regarding transplant, living donation process, etc

– Links to the solicitation websites.

 

July 28, 2013.

13. Families find hope on social media for relatives needing organ transplants. Recipient-centered article about soliciting using social media to find a living kidney donor. Nothing about the risks or process of living donation at all.

 

July 29, 2013

14. Donor found for 14-year-old Ware boy with kidney failure; community rallies support. Article centers around 14-year would-be recipient.

– Brief mention of potential living donor.

– ‘passed array of testing’

– no mention of complications, risks, etc.

– promotes fundraiser for recipient

 

15. Kindness of a stranger: Woman donates kidney to her customer.

– mentions specific transplant center

– detailed info about recipient’s kidney disease

– lots of “God-talk”

– small paragraph about evaluation process

– Screwed up the mortality statistic. Says “0.6 percent out of 10,000 donors”. It should say 0.6% OR 6/10,000.

– Also says “all costs [for donor] were covered by [recipient’s] insurance” which is untrue. Travel, lodging, food, childcare, lost wages, mental health treatment, etc. are NOT covered by the recipient’s insurance.

– Refers to the procedure as ‘minimal’  <- WRONG.

– No mention of other living donor risks or complications.

 

I was out of state for a week so I fell way behind on my google alerts. I had all intention of catching up and including them here, but well – I’ve got a full schedule these days. I suspect, however, I’ll be revisiting this topic at a later date.

 

In conclusion:

15 articles

15 ‘happy’ stories

10 erroneous statements or facts (including one regarding the wait list)

13 omissions of donor complications, risks or consequences

5 quotes from ‘experts’

6 transplant center promos

5 fundraisers

 

 

PS. Google alerts also delivered the following:

– transplant center video or webpage on living donor transplant – 7

– surgical, medical, technical topics – 8

– and multiple articles from outside the U.S.

 

 

*I’m sure she would argue with my characterization as a kidney broker, but that is indeed, the role she plays.

**including live liver donation, although there should be far fewer articles pertaining to that

Categories
Living Donor Risks Living Kidney Donor Registry

Ten Year Kidney Donor Data Causes a Scandal

Recently, I posted information from the Swiss Living Donor Registry on the health and well-being of kidney donors ten years post-donation. Well, it seems that the researchers at the registry, who owe their paychecks and employment to the Swiss government, are more than a little ticked off about their numbers being made public.

As I understand the situation, Dr. Thiel (of the Swiss LD Registry) gave a bunch of data to the german tv show REPORT MAINZ in April 2011 for a July 2011 broadcast focused on living kidney donor chronic fatigue (remember that?).

The Swiss Federal Office of Public Health (BAG) released their annual report in December 2011*, which contained data from the Swiss Living Donor Registry. Problem is: the data reported to BAG didn’t match the data given to REPORT MAINZ by Thiel some months earlier. BAG omitted the statistics on long-term fatigue, everything on cardiovascular events and disease, and minimized the incidence of hypertension.

 

I did mention the Swiss government commissioned the data collection on living donors, right? That the Swiss government is funding the registry and its subsequent product, yes?

 

Given the situation, the folks at REPORT MAINZ did what any good investigative reporters would do – they released the data in a July 2012 broadcast, specifically the information on hypertension, cardiovascular events, and chronic kidney disease stage 3/4.

The remaining Swiss living donor registry doctors, when confronted with this, reacted like any person caught in subterfuge would react – they protested, yelled, stomped their feet, and when they didn’t work, they sued.

 

First they claimed that releasing the data was a violation of their copyright. (WTF? It’s TAXPAYER FUNDED RESEARCH).

Then Nolte, one of the Swiss LD Registry researchers, said that publicizing the data jeopardized her future publications (even though she presented the fatigue data in 2009).

When that didn’t work, Steiger, who took the helm after Thiel’s death, demanded a correction, stating that the incidence of cardiovascular disease among living kidney donors wasn’t an issue because it was equal to that in the general population. (Except that living kidney donors are supposed to be HEALTHIER than the general population, so if they’re experiencing cardiovascular events and disease at the same rate, and reduced kidney function is associated with a higher risk of CV events and disease, removing a living donor’s kidney increased their incidence of cardiovascular disease!).

 

And now a lawyer has issued a Cease and Desist letter, and threats are flying at the journalists.

 

By all accounts, Thiel was a caring and respected doctor and researcher. It’s not likely he would knowingly give false information to a reporter, or participate in concealing truthful data from the Swiss govt or public. If the remaining researchers can prove the data Thiel gave to REPORT MAINZ in mid-2011 is false, or at least, way over-exaggerated, why don’t they just do it? Why all the weird, side-stepping threats?

 

I don’t have any answer for any of that, but I thought the controversy important enough for you to know. As more rolls in, I’ll keep you updated.

 

 

*Thiel died in January 2012, so it’s likely he had very little to do with the numbers given to BAG for publication.

 

Categories
Living Donor Risks Living Kidney Donor

Another NY Times living kidney donor transplant article, all about the recipient

Nina Bernstein this time, celebrating that undocumented immigrant Angel finally got his kidney transplant. His living donor wasn’t his wife, but his brother, who is ALSO an undocumented immigrant.

As with Mr. Kevin Sack, I sent her an email through the NY Times website. Since I’ve yet to hear a peep from Kevin, I don’t expect a different result here. But we advocates, we just keep trying, right?

 

 

Ms. Bernstein:

I understand your attempt to highlight the legal hurdles of an undocumented immigrant receiving potentially life-saving health care (although a transplant is NOT a cure, and Angel will be on expensive medication the rest of his life at the taxpayer expense), but what about his equally undocumented immigrant brother? A kidney is not a pint of blood, he has been exposed to untold short and long-term risks, and exactly who will be there to care for him?

According to OPTN, 4.4 living kidney donors die each year in the US within 12 months of surgery.

20% experience complications: nerve damage, pancreatitis, intestinal blockage, hernia, testicular swelling requring surgery, adrenal dysfunction, chronic fatigue, etc.

20-30% suffer from depression, anxiety, anger, PTSD, financial or other psychosocial issues post-donation. Not a single transplant program offers aftercare or support.

There are NO NATIONAL STANDARDS of evaluation, selection, or treatment for living donors. Each program makes up their own policies (none of which are based on clinical evidence) and they are accountable to no one.

There is NO SHORT OR LONG-TERM DATA on living donors. No one even bothered to collect a social security number until 1994, omitting 40 yrs of LDs. All published studies have been single center, small sample sizes, and rife with selection bias and validity problems.

In 2000, the Secretary of Health mandated One year of follow-up on all LDs (two years as of 2006). A decade later, 30% are still reported ‘lost’ by one-year. In 2009, OPTN’s own data task force concluded the database to be ‘woefully inadequate’ and ‘useless’ for analysis or research.

The remaining kidney does not ‘grow’ but hypertrophies, which means the cells actually swell under the increased pressure of doing double the work. This makes the kidney more vulnerable to disease, toxins or damage. Think of what happens to a balloon when air is blown into it.

A 10% reduction in kidney function has been proven to significantly increase one’s cardiovascular risk (Tonelli 2007), and living kidney donors lose approximately 30%. This means a higher lifetime risk of hypertension, cardiac disease and death, and kidney disease and death. Since 1994, 300+ kidney donors have been waitlisted in need of their own kidney transplant, approximately 20 years post-donation. A scarier prospect is that the vast majority of those in early stages of kidney disease (GFR < 80, which includes all LKDs) will never progress to kidney failure because they’ll die of a cardiac event first (Brenner 2008).

Ron Herrick, the world’s very first LKD, suffered a stroke in 2002, was on dialysis the last years of his life, and died shortly after cardiac surgery in 2010.

As the sister of a kidney recipient, and friend of a heart recipient, I understand the importance of donor organs and transplants. But as a living kidney donor and activist, I find the constant perspective of LDs as nothing more than an afterthought completely unethical and abhorrent. The public should never be regarded as medical supply. Living donors are people too, and we deserve the same care and respect as our recipient.

Cristy Wright, M.Ed.
www.livingdonor101.com

Categories
Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor Transplant Wait List

Open Letter to Ann Work: A Kidney is not a Spare

Ms. Work,

I just read your story on Ms. Silvestri’s living kidney donation (found here), and found the misconceptions and errors contained therein to be highly disturbing.

 

1. A kidney is not a spare. While one can function without an arm, or eye, no one would consider the second a ‘spare’ and no one would ever consider one as beneficial as two. The remaining kidney does not ‘grow’, but hyperfiltrates, meaning the actual cells of the organ swell under the pressure of doing double the work. This adaptation leaves the kidney and its nephrons more vulernable to toxins, disease, damage and age.

Consider what happens to a balloon when air is forced into it.

 

2. While the intended recipient’s insurance pays for the evalution or surgery, many living donors have reported bearing the cost of complications or mental health services post-donation. Many insurance policies will have a time or money limit on their living donor benefit, which leaves the living donor with permanent nerve damage or adrenal dysfunction responsible for their own care. Mental health services are never covered.

 

3. Yes, it is illegal to sell OR BUY a kidney in the US, but recent reports have indicated the transplant industry’s lax attitudes on the matter. See Dan Rather’s “Kidney Pirates”, as well as Nancy Schepler-Hughes profile on the Rosenbaum trafficking case here: http://www.counterpunch.org/2011/11/30/the-rosenbaum-kidney-trafficking-gang/

 

4. A kidney donor in need of a kidney does NOT go to the ‘top of the list’. That individual is given four LOCAL priority points, which amounts to approximately one year of wait time on the list. See here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf

 

5. Where is the proof that “99% of donor weather their surgery with ease”?

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, grief, anger and PTSD.

There are no national standards of living donor evaluation, selection, or treatment. Each US transplant center makes up its own rules.

There is NO comprehensive short or long-term data. The first LKD occured in 1954, yet no identifying info was collected on LDs until 1994. In 2000, the Secretary of Health mandated one year of follow-up on all living donors (2 yrs as of 2006) yet 30% are still reported ‘lost’, and not a single transplant center has been penalized for noncompliance.

 

I understand, Ms. Work, that your information was most likely gleened from the local organ procurement organization, a nearby transplant center or surgeon, or even the websites of OPTN or UNOS. But they all benefit from living donor transplants, financially and otherwise. Before penning your next living donor related article, I urge you to consider sources outside of the transplant industry, folks and groups that prioritize the protection and care of living donors. They will have the most insight.

 

Sincerely,

LD101

Categories
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 change.org 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 change.org (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):

http://abcnews.go.com/US/dying-dad-jesus-navarro-denied-kidney-transplant-immigration/story?id=15494070#.TzBLTMVSQWM

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 change.org) 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?