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The Latest on Living Donor Follow-up (Hint: it’s still really, really bad)

Earlier this year, OPTN put three different living donor related proposals up for public comment. One, about living donor follow-up, is still being haggled over, and therefore the subject of an August ACOT presentation. While the majority of the talk revolves around living kidney and liver donors who donated in the US between July 1, 2009 and June 30, 2010, there’s one bar graph that depicts the last four years of follow-up reporting.

 

 

A decade after the Secretary of Health ordered all transplant centers to report one year of follow-up on all living donors, and only 65.5% of living kidney donors, and 68.9% of live liver donors were known to be alive or dead one year after donating. (for those who donated July 1, 2009 through June 30, 2010)

Meanwhile, only 40.7% of kidney donors, and 54.7% of liver donors had their donated organ function checked (aka lab values).

 

I ask you, if transplant centers were that concerned about the health and well-being of living donors, would these numbers be this low? And more so, would transplant centers (the primary membership of OPTN) be complaining about attempts to increase compliance rates?

 

 

The original proposal:

§12.8.3.1 – Transplant centers that recover living donor organs must report accurate and timely follow-up data on the LDF form for at least 90% of their living kidney donors at the required reporting intervals, which at a minimum must include:

Donor Status

  • Patient status
  • Cause of death, if applicable and known
  • Working for income, and if not working, reason for not working
  •  Donor developed hypertension requiring medication
  •  Diabetes

 

Kidney Clinical Information
  • Serum creatinine
  • Urine protein
  • Maintenance dialysis
  • Donor developed hypertension requiring medication
  • Diabetes
Complications
  • Has the donor been readmitted since last LDF form was submitted?
  •  Kidney complications

 

The final language softened the reporting standard, requiring 70% next year, then 80% and finally 90%. (Reminder: it was supposed to 90% back in 2000!). So what happened?

 

 

And who are the professional societies*? Pretty much everyone who financially benefits from living donor transplants:

American Society of Transplantation (AST)

American Society of Transplant Surgeons (ASTS)

NATCO – the organization for transplant professionals

OPTN/UNOS

 

This mandate has been on the books for over a decade. Yet despite repeated warnings and accommodations, the transplant industry has not only refused to conform, they constantly grouse and work to undo the pitiful standard to which they’re held. After awhile, one has no choice but to conclude that they simply don’t want to look after their living donors post-operatively.

The question is: why?

 

*according to the presentation, reps from HRSA too.

Permanent link to this article: http://livingdonorsarepeopletoo.com/the-latest-on-living-donor-follow-up-hint-its-still-really-really-bad/

3 comments

  1. Amber

    I am currently researching the possibility of being a living donor for a family member (well….technically I’m not related to this family member as I am a step child) who needs a liver transplant. The family member was to receive her daughter’s donation, but the morning before the surgery, another test came back (a biopsy from the donor) and the surgery was cancelled. The family hasn’t released what it was but the daughter is no longer a candidate. Anyway. I have been reading several living donor sites and a lot of them have the same information you list about the lack of info/care regarding after care for the donors. My question is – Is part of the reason the statistics on donors is so low, because they don’t return to their doctors or do follow up care past 1 yr? Are they just choosing to follow up with their own physicians or is it truly because there is no after care for them?

  2. LDPeopleToo

    The reason living donors (kidney and/or liver) aren’t receiving aftercare and follow-up is because the transplant industry doesn’t think it’s important. From the first living kidney donor transplant in 1954, they’ve convinced themselves that taking a kidney or a chunk of liver from a living person is an ethical and ‘safe’ thing to do. Actually, it’s not that simple; the moment they forged ahead with the first living donor transplant, they also decided that an attempt to improve a sick recipient’s quality of life was important than the harm done to the healthy living donor.

    I know that can be complicated, but it makes sense when you consider:

    – No one collected any identifying information on LDs until 1994 (name, social security number, birth date, etc). So we no nothing about 40 years of US living donors.

    – Even though the Secretary of Health ordered all transplant centers to submit one year of follow-up on all living donors in 2000, they’ve refused to comply (some centers have a zero reporting rate), and no one at OPTN or HRSA have penalized them for not reporting. OPTN documents from 2011 on the noncompliance rate admitted that there is no evidence contact was even attempted by the transplant centers.

    – Transplant recipients are tracked in a national 10-year registry, and the compliance rate, ten years out, is approximately 85%.

    These beliefs (that it’s ‘safe’ and that the recipient is more important) have resulted in an informed consent process that is very optimistic about outcomes and minimizes risk possibilities. Consequently, many people are making the decision to be living donors based on misleading ideas about their short and long-term health prospects. So *if*, and I say *if*, LDs are choosing not to return for aftercare, it’s because the transplant industry has lead them to believe it’s not really necessary.

    PS. My transplant center sent the follow-up form to my house with a cover letter asking my primary care physician to send it back to them. This seems to be standard procedure, so LDs are not ‘lost’ because they’re choosing not to return to their transplant center specifically. They’re lost because the transplant centers are not prioritizing them.

  3. Lilly

    When I asked my “advocate” what the recommendations were for living donors post-transplant, she told me there weren’t any! In other words, there was absolutely no concern about my future well-being when all was said and done. When I responded to her that I thought this was crazy, she seemed offended! I have blood work and my kidney function checked once or twice every year, as I have a primary care doctor who feels it is important . . . unlike the team who harvested my kidney for my husband.

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