Uniform standards for evaluation, consent, and aftercare.
We need federal dollars which can be accessed to care for donors with complications. Even if a donor has insurance, they should not pay for any complications related to the donation (not just the surgery). Relying on the recipient's insurance coverage could be an issue for 'valuable consideration.' Valuable consideration is not about donors being paid--it means one person gains while another loses so if one donor is covered by a cadillac plan and another by a suboptimal plan, we could claim is in violation of NOTA. All kidney donors should have a Living Organ Donor Network insurance policy. Again, those with and those without brings up the concern for inequities.
We need uniform definitions for the quality indicators that should be tracked and reported on all donors. Instead of saying 'complication' we should move to quality indicators. QIs track how a patient moves through your hospital system and identifies all adverse events and deviations from norm including if there are reoperations, readmissions, etc. Is not enough to document a reoperation or readmission but need a linked diagnosis. We need a national living donor registry independent of the current OPTN system--one that allows donors to access their records to verify the information AND one that allows the donors to submit data on their own behalf. History has proven that the OPTN cannot and will not get this done. Donors are not fully informed without data. We need consent processes that fully integrate all surgical literature, risks, data not just that which uses live donors as the denominator. We are surgical patients first--we are people with one kidney for the rest of our lives.
We are half the donor pool. We need a system that focuses on the needs of live organ donors. Long overdue.