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Advocacy Ethical Considerations Living Donor Protections Living Donor Risks OPTN

The Hypocrisy of OPTN’s Committee Goals

I perused OPTN’s 2009-2010 committee goals today, and as you can tell from my title, I’m not amused.

First, from the background:

Aannual Committee goal development began in October 2005, when the OPTN/UNOS President convened five working groups…made up of members of the Board of Directors; Committee chairs, representatives of a number of societies including AST, ASTS, AOPO, ASHI, ISHLT, and NKF

That’s quite an alphabet soup of organizations, I admit, and if you want to take the time to websearch each one, be my guest. Or you could trust that I did that already and found that Every Single One is a RECIPIENT-based organziation. Organ procurement, transplant surgeons and the like; none of them even pretend to consider living donors as human beings, let alone equal participants in the proces worthy of protection, follow-up and respect.

The original strategic plan goals in 2005:

– Increasing the number of organs transplanted
– Supporting live donor transplantation
– Consideration of net benefit as applied to organ transplantation
– Differences in the opportunity for transplant within the U.S., and
– The collection of clinically relevant and validated data.

UNOS has had the OPTN contract since 1986 (yet they cared so little for us they didn’t even collect LD social security numbers til 1994); they’ve had policy to collect follow-up data on living donors since 2000 (but the transplant centers were 50-80% non-compliant), yet it wasn’t until 2005 they decided it should be “clinically relevant and validated”. And since 2005, independent researchers, UNOS officials and SRTR personnel have all criticized UNOS’ data collection as ‘woefully inadequate’, and worthless as far as any meaningful analysis goes.

Also, “supporting live donor transplantion” is code for ‘encouraging’ live donor transplanation, not actually giving one whit about us.

The strategic goals as of 2008:

1. The Donor Shortage
2. Living Donor Safety
3. Improving Allocation Principles
4. Reduce Variation in Access to Transplantation
5. Oversight of Transplantation, Role of OPTN
6. OPTN Operational and System Effectiveness

Once again, if the choice becomes obtaining an organ for a recipient OR protecting a prospective living donor, the living donor loses.

OPTN chose the wording for their goals purposely. If they wanted to increase organ donation/deceased organ donors, they would’ve said so. Their use of the phrase “The Donor Shortage” includes living donation, and in recent years, has been used by every pro-recipient organization (and media outlets) as justification for luring unwitting, ignorant and well-intentioned people into being human kidney/liver incubators.

It’s common knowledge that the OPTN waiting list is mucked up, full of ‘inactive’ candidates and multiple listings. “Death by Geography” (aka uneven distribution of available organs across the U.S.) has been a problem for years, yet it only rates a 4th priority. Who are their clients, exactly??

OPTN Vision Statement:

The OPTN promotes long, healthy, and productive lives for persons with organ failure by promoting effective, high quality, and safe care; equitable organ allocation and access to transplantation; efficient care; maximized organ supply; and system innovation and improvement.

Yet not a single mention of “quality” transplants in the annual goals, only “quantity” of transplants.

Ethics Committee Goals:

1) Continue to evaluate potential ethical issues involved in the developing kidney allocation system (KAS) policy proposal for establishing kidney allocation priority

2) Review positions, statements, and documents currently in development by the Committee taking perspectives included in NOTA and the Final Rules into account

3) Review previous positions and white papers posted on the UNOS and OPTN web sites and recommend to the Board whether any should be updated by the Committee or archived

Nothing about living donor safety there.

Kidney Transplantation Committee:

3) Co-develop with the Living Donor Committee a plan to assess the incidence of renal dysfunction/need for dialysis in living donors including parameters for follow-up, risk assessment

The irony is that if the transplant centers and OPTN had been tracking living donors like they ethically should’ve been all these years, this wouldn’t be necessary.

Second, there’s a helluva more to living donor safety than renal dysfunction. It’s an established fact that any sort of renal insufficiency puts one at much greater risk for cardiac issues yet apparently OPTN isn’t worried about that, mostly because they can deny it’s ‘related’ to the donation (and non-medical people will believe them. They don’t spend their spare time reading research studies).

Third, ‘develop a plan’? That’s akin to ‘sent to committee’; it means nothing except a lot of yapping. All talk and no walk, in other words.

Living Donor Committee:

1) Identify and report best practices regarding programs with good living donor follow-up

A ‘best practices’ study was conducted in 2001. Out of nearly 300 transplant centers, only 11 met the criteria. Not only are OPTN policies ‘voluntary’, they do no quality control inspections and have never punished centers who do not comply. What will be different now?

2) Recommend appropriate evidenced-based OPTN policy concerning revised living donor submission and completeness requirements, considering recommendations of the Living Donor Data Task Force

What the hell does that even mean? OPTN requires transplant centers to submit follow-up on living donors for two years (has since 2006). If it’s not happening, they simply need to punish the non-conforming centers, not ‘do more studies’.

3) Explore development of a position statement in support of payer reimbursement for living donor follow up. This activity is aimed at improving OPTN follow up data and its use to inform both the public and OPTN activities in the area of living kidney donation safety.

This refers to transplant centers’ constant whining that follow-up with living donors is an ‘unfunded manddate’. They charge six-figures for a transplant, but complain about asking a coordinator or other administrative person to MAIL out a FORM to their living donors. Woo – that’s some hard work; I need a rest. They should try living with one kidney if they think they’ve got it rough.

4) Study and co-develop renal dysfunction metric for use in living donor outcomes reporting with the Kidney Transplantation Committee

5) Support the Kidney Committee in the development of national paired kidney donation program and appropriate policies, guidelines, and educational resources

Yep, not a damned thing about long-term data collection or follow-up, not a murmur about Informed Consent, and nothing about the plethora of living donors suffering from depression, anxiety, anger and PTSD. Glad to know you care about us so much.

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