The news this week that the National Living Donor Assistance Center, or NLDAC, had expanded its eligibility and its benefits is certainly welcome and long overdue. I remember submitting (and later posting here) my public comment on its proposals back in May 2019.
The changes are well worth cheering about: for starters, the income-level cutoff was raised from 300% of the federal poverty guidelines (about $38,000) to 350% ($45,000); even better, the assistance now covers lost wages and related expenses like childcare and eldercare, which are often a deal breaker for prospective living donors; and, for the first time, NLDAC covers nondirected donors, who don’t even know their recipient. Unquestionably, that’s great news.
Okay, here’s the “but”: I can’t help feeling frustrated that the changes don’t do still more. Advocacy groups had lobbied for at least a 500% increase in income eligibility, which would be $64,000. Most disappointing of all is that the income guidelines are still based on the recipient’s income (fortunately, an exception is now made for nondirected donors). Evidently, the federal agency that had to approve any of NLDAC’s requests thinks that a kidney patient in failing health, struggling to pay his or her own bills, with a reduced ability to work, and unimaginable stress should be expected to pay for the donor’s lost wages, and sometimes travel and lodging.
To be fair, the agency is not totally without a heart. Potential transplant recipients whose income is above the limit but can’t manage this financial challenge can always apply for a “financial hardship waiver.” But the burden is on the recipient and, by extension, the donor. A living donor transplant typically means a far shorter wait for a kidney (for a deceased-donor kidney in some states, it’s up to 5 to 10 years), a better outcome, and a welcome end to dialysis (ultimately, at a significant cost savings for Medicare).
With an ongoing shortage of organs, why not remove as many disincentives to living donation as possible? Why should living donors and/or transplant recipients, already contending with life-and-death matters, have to deal with all the paperwork and time-consuming, exhausting, budget- and soul-searching to see if they can even afford this lifesaving gesture?
It’s not right.