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
Living Donor Risks Living Kidney Donor

Financial Consequences of Living Kidney Donation – Canada

We prospectively enrolled 100 living kidney donors from seven Canadian centers between 2004 and 2008 and collected and valued economic consequences ($CAD 2008) at 3 months and 1 year after donation. Almost all (96%) donors experienced economic consequences, with 94% reporting travel costs and 47% reporting lost pay. The average and median costs of lost pay were $2144 (SD 4167) and $0 (25th–75th percentile 0, 2794), respectively. For other expenses (travel, accommodation, medication and medical), mean and median costs were $1780 (SD 2504) and $821 (25th–75th percentile 242, 2271), respectively. From the donor perspective, mean cost was $3268 (SD 4704); one-third of donors incurred cost >$3000, and 15% >$8000. The majority of donors (83%) reported inability to perform usual household activities for an average duration of 33 days; 8% reported out-of-pocket costs for assistance with these activities.

Full Abstract: http://onlinelibrary.wiley.com/doi/10.1111/ajt.12662/full

Categories
Organ Markets

The Latest on Iran’s Kidney Market

In short:

Iranian paid unrelated donors have lower quality of life and higher incidence of microalbuminuria compared with related [unpaid] donors.
  

From an editorial in the same journal issue:

…their identification of a difference in microalbuminuria postnephrectomy between paid and unpaid donors fuels
concerns that the clinical evaluation of donors may be compromised when donor payments are allowed. Although the absence of prenephrectomy information precludes definitive conclusions, the short time since donation suggests that abnormalities may have been present prior to nephrectomy and accordingly, that the donor clinical evaluation may not have been as thorough as necessary.

The most plausible alternative explanation for the findings is that the proteinuria was in some way related to the higher level of poverty in the paid donors.

  
So – either paid living kidney donors are receiving an adequate evaluation OR paid living kidney donors are overwhelmingly poor which causes great kidney-related health problems.

Note that each of these possible explanations fall neatly into the offered objections to implementing a paid kidney market.
  

From one of the article’s references, aka a study on whether Iran’s living kidney donors (100 in this case) were knowledgeable about complications and risk:

Seventy-nine donors were men and 21 women. Mean age was 27 ± 4.4 years. Ninety-seven donors were unrelated to the recipient and three were related (LRD). The motivation for donation was altruistic in nine (three LRD and six LURD) and financial in 89. Eighty donors were not aware of the possible short- or long-term complications of nephrectomy. Six donors mentioned the possibility of potential intraoperative complications, and 16 mentioned the risk of renal failure. Only 44 donors knew that they should visit doctors regularly after donation, most of them (61%) from the postoperative group.
  

And my favorite (from the op-ed again), the reminder that after nearly 60 years, we still don’t have any comprehensive reliable data on living donors’ health and well-being:

Sadly, the risk factors for and clinical significance of proteinuria in living kidney donors remain unclear. The existing literature on this subject is hampered by use of nonstandardized definitions, a paucity of controlled studies, and virtually no information regarding progression over time.
   

Abstract (full not available without subscription): http://onlinelibrary.wiley.com/doi/10.1111/ajt.12488/abstract
Full article: http://onlinelibrary.wiley.com/doi/10.1111/ajt.12486/full

Categories
Living Kidney Donor Organ Markets

How Legal and Illegal Kidney Trafficking Hurts Everyone

I ran across this scholarly paper the other day, compliments of my google scholar alert. I encourage everyone to read it in its entirety. Below are some excerpts:

The World Health Organization estimates that there is a kidney sold every hour illegally.

 

After the introduction of cyclosporine (anti-rejection medication) in the mid-70s and global distribution in the 1980s: the kidney took on new meanings; in a living donor, the kidney was now envisaged as a surplus object, an object that could serve wider uses for others…

In this clinical landscape, “the medicalized body” abstracts a person from their parts and made the distancing of the material body from the ‘self’ quotidian.

 

These new understandings of the body, especially the rhetoric of surplus of one’s other kidney, were quickly normalized and mobilized within medical and patient communities. With transplantation, the living donor’s other kidney was no longer seen as useful to them, but rather of better use elsewhere — in the body of a critically ill patient.

 

Kalindi Vora argues that the expendability of populations and persons is directly linked to their labour use-value; those who fail to be significant economic actors in the dominant society are not as useful as those who are.
Kidney traffic hinges on division of both the body and of the space in which the body is fragmented. No longer
a ‘gift’, the commercialized kidney renders social relationships through exchange irrelevant. With the division of space which renders donors anonymous, there can be mindful distance of the recipient taking one’s kidney for their own use; this mindful distance is bolstered by the act of monetary compensation to the seller as well as keeps the broker relevant.

Anne Griffin recently detailed the dubious parameters in the criteria used to define the [Iranian] waiting list as ‘eliminated’ in Ghods’s study. Griffin described that poor patients, who largely have to wait for cadaveric donation, since they cannot afford to compensate LRD or LUD’s, were still waiting on kidney transplants; the wait was only over for those with fiscal means. 

(emphasis mine)

 

Especially in the wake of publications from medical and ethnographic studies of kidney vendors in India, Bangladesh, Iran, and Moldova, variations of the same story were told: selling a kidney never made any significant impact on donor’s economic lives, despite what many economists, bioethicists, and medical professionals claim. What vendors did experience were lost wages, from the post-operative pain and sickness many vendors felt, feelings of deep regret, and societal expulsion in some grave cases. Thus, to promote the dismemberment of the economic underclass as a means of being economically ‘visible’ is both ethically and morally irresponsible. Moreover, rarely mentioned in literature advocating legalized markets (regulated and unregulated) are the risks of nephrectomy to donors or strategies focused on prevention of renal disease.

 

As Donald Joralemon and Phil Cox aptly state, “if society has a moral duty to rescue, the obligation surely is not limited to rescuing those of means.”

(emphasis mine)

 

Categories
ACOT Living Kidney Donor

Living Donors, Paired Kidney Donation, & Funding, Part III

See Parts I and II to keep up with the conversation….

 

Segev and the Kidney Paired Donation Workgroup detailed all the aforementioned supposed ‘extra’ expenses to KPD to set the foundation for their big request: money. And not just any money, but a ‘fee’ paid by the federal government, Medicare and Medicaid, and private insurance companies (which really means us, the consumer). They envision another contractor like OPTN or SRTR, only this one will administer a national kidney paired donation program.

The reason Segev and company need to ask for the above is because when NOTA 1984 established OPTN, a taxpayer (and private insurance company) funded organization, it was to manage a national DECEASED DONOR transplant system. Not living donation. And not living paired donation (such a thing didn’t exist then). At the time, the various facets of the federal government believed that if deceased donation was maximized (which hasn’t happened), the need for donor organs would be met. But they also knew it would be squicky for the government to financially support a transplant system that involved taking major organs from healthy, living people. Especially when we had no idea how taking a kidney from someone affects their health in the long-term.

So proposing that the living, breathing people involved in kidney paired donation be treated like cadaver donors is a bit – well – unsettling. To be sure, a couple of voices in the room (on the phone?) were squawking that such a thing was ‘allocation’ and well within the bounds of OPTN’s purpose, but nowhere in NOTA or any other piece of transplant legislation does allocation refer to living donors. Even though OPTN has decided that they can and will allocate non-directed donors, that doesn’t mean such a practice couldn’t be legally challenged. It just never has.

But I was bothered by the kidney paired donation workgroup’s recommendation that the public support a national KPD program for another reason.

Currently, living kidney donors comprise approximately 6000 transplants every year in the US. This means that since 1988, nearly 117,000 people have compromised themselves to help a person with end-stage renal disease*. During all that time, the federal government (aka the public) has funded a 10-year registry for transplant recipients, to track their health and well-being. But it wasn’t until 1994 that anyone collected any identifying information on living donors at all. And i it wasn’t until 2000 that the Secretary of Health mandated that transplant centers report one-year of follow-up on all their living donors.

A transplant center was only required to report a living donor’s status to receive credit from OPTN, but a presentation at the summer 2012 ACOT meeting revealed that 35% of kidney donors were still marked ‘lost’. One year post-donation, U.S. transplant centers had no idea if more than one-third of their kidney donors were alive or dead.

The transplant industry’s collective excuse for this non-compliance and negligence was that it was an ‘unfunded mandate’. They simply had no money, they insisted, to make sure that living donors, the people who provided the treatment for their end-stage renal disease patients and made their surgeons and facilities a tidy profit meanwhile, were cared for properly.

Yet not once in those 12 years did a single transplant center or physician suggest that public money be used to ensure transplant centers’ compliance with the mandate. No one has ever suggested that the same infrastructure used to track and collect data on transplant recipients be applied toward living organ donors. By all appearances, locating funding for a living donor registry has never, ever been a consideration.

But they have no problem soliciting the federal government and the American public for money to run a program that has, so far, resulted in a maximum of 600 transplants per year.

 

I wish I could say that was the only insult the workgroup’s presenters threw in living donors’ faces.

 

Stay tuned for Part IV (the last one, I swear!)

 

 

*there were living kidney donors from 1954-1987 but those numbers are estimates and I don’t have them memorized or on-hand.