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Living Donor Research Living Donor Risks Living Kidney Donor

African-American Living Kidney Donors At Higher Kidney Risk

The authors examined a database linking U.S. registry identifiers for living kidney donors (1987-2007) to billing claims from a private health insurer (2000-2007 claims)

 

Among 4650 living donors, 13.1% were African American and 76.3% were white; 76.1% were first-degree relatives of their recipient. By 7 years post-donation, after adjustment for age and sex, greater proportions of African American compared with white donors had renal condition diagnoses: chronic kidney disease (12.6% vs 5.6%), proteinuria (5.7% vs 2.6%), nephrotic syndrome (1.3% vs 0.1%), and any renal condition (14.9% vs 9.0%).

 

Folks, this is only seven years post-donation. the average living kidney donor is 40/41; life expectancy is near 80. The long-term ramifications of these numbers are staggering and horrifying.

Please, everyone: take care of yourselves.

 
Lentine KL, Schnitzler MA, Garg AX, Xiao H, Axelrod D, Tuttle-Newhall JE, Brennan DC, & Segev DL (2015). Race, Relationship and Renal Diagnoses After Living Kidney Donation. Transplantation PMID: 25905980

Categories
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

Categories
Advocacy Ethical Considerations Living Donor Risks Living Kidney Donor OPTN

Living Kidney Donor Promotion Disguised As Best Practices

Last summer, the American Society of Transplantation sponsored a “Best Practices in Living Kidney Donation” Consensus Conference. In January, OPTN distributed an Executive Summary of the conference’s recommendations (Best-Practices-in-LKD-Consensus-Conference-June-2014). Shortly thereafter, the American Journal of Transplantation (owned and operated by the American Society of Transplantation) published an article about the conference.

I received the Executive Summary in January, days prior an ACOT meeting. I was so incensed, I composed and read (it was a teleconference) my response to this conference and its conclusions, which is now part of the public record here (last page). Another living kidney donor, Jane Zill, also submitted public comment, which wasn’t included in the meeting notes for some reason, but I will include here.

In summary: this conference was nothing but another excuse for those who profit from living donor transplantation to sit around and devise means of increasing and promoting living kidney donation.

  • Out of 67 conference attendees, only 3 were living donors, and all are employed by transplant centers
  • 90% of the conference attendees profit from living kidney donor transplantation.

 

“It is our goal”, the Executive Summary reads, “to eliminate living donation and LDKT [living donor kidney transplantation] barriers”.

 

Not to ensure living donor risk is minimized, or that accurate and long-term living donor data is collected, or that living donor’s psychological well-being is protected; No, this “best practices” conference was primarily (and I would say solely) about promoting and increasing living kidney donation.

 

Since my thoughts are available online, I won’t repeat them here (but please read them yourself). Since Ms. Zill’s have been excluded from ACOT’s notes, I have copied/pasted them below:

 

The “Best Practices in Living Kidney Donation Conference” (2014) is not the first professional meeting to address the role of living kidney donors in transplantation. Prior meetings and reports have resulted in the articulation of “best practice” principles to guide living kidney donor transplantation. Key meetings and reports include:

1.) The “Consensus Statement of the Live Donor” (Kansas City, 2002) states:
The person who gives consent to be a live organ donor should be …free from coercion… The benefits to both donor and recipient must outweigh the risks associated with the donation and transplantation of the living donor organ.

2.) The Amsterdam Forum on the Care of the Live Donor (2004) emphasized the importance of establishing donor autonomy in decision-making by:
• Quantifying future renal function in living kidney donors;
• Providing information about alternative forms of therapy for potential recipients;
• Creating a meaningful role for independent donor advocacy;
• And, establishing mechanisms for long-term medical follow-up, data collection, and the creation of living kidney donor registries

3.) The Institute of Medicine (2006) reported:
• the need for independent donor advocacy;
• the need for inadequate data to ensure informed consent;
• the importance of a risk-benefit assessment when using living organ donors; and,
• the need for prospective donor registries.
(“Organ Donation: Opportunities for Action”, National Academy of Sciences)

4.) In 2007, Dr. Sue Mc Diarmid, then President of the OPTN, surveyed OPTN member centers for their protocols on living donation. Two protocols were selected to represent “best practice” by the UNOS/OPTN Living Donor Committee, one from North Carolina and another from New York. In both states there had been a death of a living
liver donor, which prompted each state legislature to enact laws regarding living organ donation due to an absence of regulation at the national level. It was recognized that:

A.) Advocacy for a potential donor cannot occur separate from the medical evaluation and informed consent;

B.) The primary relationship in the donation experience should be between the donor and his/her multidisciplinary Independent Donor Advocacy Team;

C.) Independent Donor Advocacy must occur free from institutional and administrative pressure fueled by financial motivation to perform transplants;
and,

D.) An advocate’s recommendation to veto a donation could be compromised by negative reactions from those invested in a transplant going forward. For this reason team support is required to deflect this burden from any one individual.

5.) “The International Summit on Transplant Tourism and Organ Trafficking” (2008) recommend strategies to “minimize the burden on living donors.” It emphasized, “A positive outcome for a recipient can never justify harm to a live donor, on the contrary, for a transplant to be regarded as a success means that both the recipient and the donor have done well.”

6.) The Third WHO Global Consultation on Organ Donation and Transplantation (Madrid, March 23–25, 2010 asserted that deceased donor organs should be the dominant form of transplantation in every country, “In all countries in which deceased organ donation has been initiated, the therapeutic potential of deceased organ donation and transplantation should be maximized. “

 

The “best practice” recommendations from the 2014 “Best Practices in Living Kidney Donation Conference” are astounding because instead of bringing forth the messages of caution and the reduction in the use of the living kidney donors, the current consensus is to increase the use of living kidney donors.

Fundamentally, the 2014 recommendations are to establish a philosophical approach that LDKT is the best option for transplant candidates and to “educate” nearly every medical professional in the recipient’s and donor’s life to promote and pursue living kidney donor transplantation.

The new recommendations are diametrically opposed to the consensus that has emerged over the past decade and amount to strategies that are 1) coercive, and, 2) will lead to the continued exploitation of the living for their vital organs. Already, because independent donor advocates are employees of transplant centers intent on increasing the number of LDKT, the well-being of living kidney donors is not prioritized. Standards for the medical evaluation and informed consent of living donors and for data collection are so weak that they are useless.

Even more egregious, many of participants of the 2014 meeting also participated in the consensus meetings in Kansas City and Amsterdam. And, the 2014 recommendations have been made in the ongoing context of inadequate data to support the conclusion that living organ donation is safe.

In 2009 a UNOS task force found its data to be “woefully incomplete” and “useless for research or for making conclusions about living donor safety.” Unbelievably, in 2010 and 2014 the Journal of the American Medical Association published articles that used this same data to conclude that living kidney donation has little risk now widely cited as evidence of the safety of living kidney donation. The algorithm used to verify SSNs for the JAMA research has never been described.

But, in 2013 researchers in Norway reported in Kidney International an increase in rates in mortality from all causes after kidney donation – over many years. In 2007 the Bulletin of the World Health Organization reported that in Iran, Egypt, and India, where donors are paid, donors report deteriorated health, worsened financial status, and regret for their paid donation.

 

Transplant medicine in the U.S. is a highly commercial industry and is dependent upon a supply of human body parts to be viable. BizAcumen in 2009 reported, “The global organ and tissue transplantation market stands to gain from the increasing living donor organs…” BCC Research Market has forecasted in “Organ and Tissue Transplantation and Alternatives” (2011), “The global market for transplantation products, devices, and pharmaceuticals was valued at nearly $54 billion in 2010 and is projected to grow at an 8.3% compound annual growth rate (CAGR) to reach $80 billion in 2015.“ This is nearly a 50% increase in the market in four years.

Although donors are not paid, there is profit and profiteering from the donated body parts of living and nearly deceased human beings, ranging from the creation of private contracts to treat foreign nationals seeking placement on the U.S. deceased donor wait list (from, “UNOS/OPTN Revisions to and Reorganization of Policy 6.0
Transplantation of Non-Resident Aliens,” 2012), to the development and promotion of products, devices, and pharmaceutics employed in the practice of human organ transplantation.

The most recent product developments are organ transport pumps, which are set to revolutionize the exchange (trade) in human body parts. Powerful principals are promoting the commercial use of products related to human organ transplantation, and thus exerting industry influence on U.S. policy related to human organ transplantation.
One example of links between industry and government is the appointment of former Secretary of DHHS, Tommy Thompson, to the Board of Directors of Organ Transport System. He has long ties to industry as the initial leader of the Donor Organ Breakthrough Collaborative.

Despite the well-articulated “best practice” principles that have occurred from 2002-2010, in transplant centers around the United States, the donor’s well-being is a low to non-existent priority compared to encouraging LDKT. The meaning of the combined lack of quality data on recipient and donor outcomes and weak standards for the
evaluation and informed consent of living kidney donor is that U.S. living donors will continue to be a vulnerable, exploited by the transplant community and its commercial interests.

The practice of LKDT will someday be compared to the unethical treatment of research subjects in the Tuskegee syphilis experiments, but will be judged more harshly due to the collusion between industry and government that has resulted in policy creation that prioritizes profit for a callous and ruthless industry that is dependent upon a
continuous supply of human body parts.

Categories
Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor

Living Kidney Donation’s Medical Risks Are Unknown, says Segev

Dr. Dorry Segev is a transplant surgeon and researcher at Johns Hopkins with many living kidney donation publications on his resume. At the American Society of Transplant Surgeons Winter Symposium 2015, he gave a presentation entitled “Long-Term Living Donor Outcomes; When to Say No“.

If you have an extra 20  minutes, I suggest sitting down and watching the video, which contains Segev’s audio and powerpoint slides. He discusses the study he authored in 2010, which has been dissected ad nauseum, and a more recent study he co-authored with Muzzale, which stated that living kidney donors have an 8-11x increased risk of end-stage renal disease as compared to their well-matched, two-kidneyed counterparts.

 

If you’re only interested in the good parts (aka the reason behind the blog post headline), confine yourself to the first minute and a half, wherein Segev says:

 

“We do about 6,000 of these a year, and we still have actually very little understanding of the medical risks.”

“The old school was we just told people, ‘Your risk of ESRD after donation is no higher than that of the general population.’ I mean that’s completely stupid.  That’s like basically saying, ‘Compared to obese, hypertensive, poor health behavior America, you won’t be that bad.  We don’t know how bad you’ll be, but don’t worry, it’s no higher than the general population.’  But we use this as sort of like this reassurance to donors.  I mean it’s completely scientifically stupid.”

“To quote the past ASTS past president Goran Klintmalm …’This is bullshit.'”

 

Can we please, pause for a minute and soak this in?

For 60 years, the transplant industry has been telling the public that living donation is safe, minimal risk, nothing to be concerned about, no danger here, etc. etc. etc. to infinity and beyond. They’ve separated us from other populations who have kidneys removed, claiming that we’re “different” because we’re “healthier”, and that even though people with isolated renal tumors should only undergo partial nephrectomies to preserve their nephrons, living donors are apparently some unique species with super-special nephrons that don’t need saving…..

It’s just so – ridiculous.

And now we have the first admission that it’s total bullshit.

 

Unlike the grandstanding that took place when Segev published his “living donors don’t die earlier” study in 2010 (which didn’t really say that, by the way; that’s just what the *media* claimed it said), this profound revelation won’t even be a blip on the media’s radar screen. Because who, outside of the transplant industry, pays attention to what’s said at these stuffy, boring conferences? Hell, half of the transplant industry probably skips it too.  While I wish I could say they’ll stop lying to potential kidney donors (and the media, and the public) and admit that yes, there is risk to donating, and no, we don’t know what that is, I know better. After all, this is the same industry that ignored repeated letters from the FDA about not using the Hemolock clip, which resulted in multiple living kidney donors deaths and injuries. Too many of them, too often, refuse to let facts get in the way of their opinion.

I guess we’ll have to do it for them. Bookmark this post. Anytime you see an article, or a post on a forum/group that perpetuates the myths, just send them this.

And let me know what happens.

 

Categories
Living Donor Research Living Kidney Donor Psychosocial Risks

Related Kidney Donors Need Aftercare and Support

This study from 2004, entitled “Psychological effects of living related kidney transplantation – risks and chances“, looked at 31 donor-recipient pairs. It concludes:

 

A. Living kidney donor transplantation is stressful for recipients, donors *and* their families,

B. The recipient’s post-transplant health affects the donor’s psychological well-being.

[Note: Yet another reason to focus on the quality of the transplant. Unfortunately OPTN’s Board of Directors has decided it wants to focus on quantity instead, in lieu of quality or patient and donor safety. See: January 2015 ACOT meeting materials]

C. It’s not advisable to go to transplant if the recipient-donor relationship is not a good one.

D. Living donors need support both before and after the transplant.

 

Reminder: The living donor psychosocial evaluation is a one-time event, and the purpose is to 1.look for signs of of payment and 2. rule out any major addiction or psychological issues requiring treatment prior to transplant. It is *not* to deal with any of the above noted points.

Transplants centers are not required to, nor do they, provide structured aftercare or support services for their living donors. The past and current living donor follow-up forms do not capture any information on a living donor’s mental health or well-being.

I’m always glad to discover a paper that adds knowledge to the living donor experience, but it saddens me to know that, despite these results, nothing has improved in living donor support care since its publication in 2004.

 

 

Heck, G., Schweitzer, J., & Seidel-Wiesel, M. (2004). Psychological effects of living related kidney transplantation – risks and chances Clinical Transplantation, 18 (6), 716-721 DOI: 10.1111/j.1399-0012.2004.00285.x