A Regulated System of Incentives for Donation

1. A Regulated System of Incentives for Donation Why Can’t We Agree to Do a Trial?

2. The Arguments in Favor of Incentives Are Clear With the current system: • In spite of decades of attempts to increase donation, there is a severe organ shortage resulting in morbidity and death on the waiting list. In the last 10 yrs, 60,000 candidates have been removed from the list because of death or becoming too sick to transplant 2) There are disincentives to donation. 3) Because, of the shortage, unregulated underground markets have developed around the world. These do not protect either the donor or recipient. A Regulated System of Incentives has the Potential to Increase Donation While Protecting Both Donors and Recipients

3. Proposed Components of a Regulated System* 1) Removal of disincentives:Donors (or donor families) should suffer no short- or long-term financial burden as a consequence of their donation (this is in accord with the Declaration of Istanbul) 2) A Regulated System of Incentives Key Principles: Protection of donor and recipient Regulation Transparency Oversight *American J of Transplantation 12: 306-12, 2012

4. Essential Elements of a Regulated System (abbreviated) * 1) Protection of donor and recipient. This includes a complete evaluation, informed consent, and safeguards; 2) Allocation by pre-defined algorithm similar to UNOS (everyone on the list has an opportunity to be transplanted); 3) Incentive provided by government; 4) Fixed “package” to the donor 5) A plan for supervision and correction of irregularities. (For a trial, short- and long-term medical and psychosocial f/u) *American Journal of Transplantation, 2012

5. Incentives Incentives could include a choice of options: a) life insurance b) health insurance (Medicare or the VA) c) reimbursement of expenses d) tax deduction e) college tuition f) direct payment (perhaps not all at once) g) others

6. KEY CONSIDERATION Regulated System - Not a Free Market) Fixed package to the donor Provided by the government Protection for donor and recipient Donor would donate to “the list”. All listed candidates would have the opportunity to be transplanted.

7. Numerous arguments have been made against a trial of incentives (at last count, 27); each has been refuted. We accept donation, so that any successful arguments must be against an incentivized system rather than against donation. Why, when we all have the same facts, is there a difference of opinion about doing a trial? Both those for and against incentives are in favor of increasing donation; both are in favor of removing disincentives; both feel that a regulated system of incentives will likely increase donation

8. Haidt J, The Righteous Mind: Why Good People are Divided by Politics and Religion, Random house, 2012 Fig 12.4, pg 306

9. Haidt J, The Righteous Mind: Why Good People are Divided by Politics and Religion, Random house, 2012 Fig 12.2 (pg. 297)

10. Haidt J, The Righteous Mind: Why Good People are Divided by Politics and Religion, Random house, 2012 Fig 12.3 , pg 302

11. This concept can be applied to the discussion about incentives for donation where both sides have the same facts. Proponents of incentives emphasize the potential benefit to the transplant candidates and to society Opponents of incentives emphasize (theoretical) concerns for the potential donors and for society. Their major key words are all about the donor: Exploitation Commodification Respect for dignity Coercion Repugnance

12. Can we reach an agreement? Proponents of a trial of incentives recognize that in a properly designed trial, major outcomes to be studied are not only a change in donation rates but also donor outcomes – both physical and psychosocial (Quality of life, satisfaction, a sense that the benefit was of value, regret) A trial that shows that incentives increase donation, but that the donors do poorly will be a strong argument against incentives (or against trial specifics [e.g., donor acceptance criteria])

13. Given that the current system is failing our patients, which is the worse option? Continuing the status quo in which candidates are suffering and dying while waiting for a kidney Or Developing trials of incentives to determine whether incentives increase donation while simultaneously resulting in good donor outcomes?

14. The Terasaki Statement and Answer “A…solution to the organ shortage should start first with recognition that the current, unnecessarily harsh no compensation policy is at the root of our dilemma”… We need to properly recognize the act of donation as the lofty charitable act for society and the nation. We previously suggested that.. Congress print a gold medal to bestow on living donors..for coming to the aid of their fellow citizens…..The cash equivalent of the gold should be approximately $10,000”