Praise — and caution — for Trump's approach to kidney donation

Praise — and caution — for Trump's approach to kidney donation
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Two weeks ago, I gave one of my organs to a stranger.

Why would I do such a thing? Like many major life decisions, it was influenced by many factors. My friend Kelly Kennedy donated to the father of a friend, and my first reaction was that she was an amazing woman who was far more generous than I. When my colleague Ilan Goldenberg donated to his father, it started to normalize the prospect of giving away a perfectly good kidney — we have two, but only really need one.

My sister tragically died of glioblastoma when I was young, and knowing two living donors began to crystallize in my mind the understanding that I could save someone else the pain of losing a loved one.

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Then I read that there were 380 people on the waiting list at Walter Reed alone, and suddenly it felt more real: That’s where my husband gets his health care. These are troops, veterans, and military family members like me.

I immediately cold-emailed the living donor coordinator there and started the screening process.

The checks were so extensive — involving dozens of vials of blood, collecting 24 hours of urine, wearing a blood pressure cuff for 24 hours, a CT scan, x-rays, PAP screen, mammogram, and screening by a mental health provider — that I started to joke I was just doing it to get the military to screen me for any possible ill effects of toxic exposures downrange.

By the time the testing confirmed I was healthy enough to donate, I was fully committed to the process and excited to save or significantly improve the life of whoever would get my kidney.

In the end, my kidney was flown to Ohio as part of a chain donation, the full extent of which may not be known for months. I was home the next day and am healing well; the recipient is reportedly doing great and thrilled to be off dialysis.

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My experience has been incredibly positive, not least because of the amazing support I’ve gotten. Brian, my husband, never balked — his response when I asked what he thought was, “That’s very on-brand for you.” My employer CNAS offered as much time as I needed to recover, and my boss even claimed some think-tank bragging rights on Twitter.

I am acutely aware of how privileged I am: As a white-collar worker with a cushy office job, solid health care options, and the resources to keep my kids happily ensconced in enriching summer camps around my surgery dates, I had plentiful resources to allow me to recover, without which I could not possibly have taken this leap. Under existing rules, Walter Reed is even able to cover travel expenses for the “non-medical attendant” family member who generously offered her time to come provide additional support for my family.

Not all are so lucky, which is why I was thrilled to read about regulatory changes put forward by the Trump administration to remove financial disincentives to living organ donation.

As explained by fellow altruistic donor Dylan Matthews, one component of the new rule would allow reimbursement with federal funds for lost wages, child care, and other expenses incurred by donors — a significant step in removing some of the barriers that could stop many others from donating. I’ve written multiple pieces documenting my concerns over lack of action on important health care issues that matter to me — but I must applaud the current administration’s potentially life-saving moves to enable more Americans to give the gift of life.

Another reason I chose to reach out to Walter Reed was that sticking within one of my existing systems of health care (I’m also a proud VA user) reduced what I feared would be a possible barrier for me about whose health insurance would be responsible for what costs. Instead of dealing with any possible paperwork hassles between different systems of care, I could just go in to the same military treatment facility I’ve already used. Knowing that the health system I’m entitled to because my husband is a military retiree would do the procedure and will continue to take care of me for the rest of my life also alleviated any concerns I had about who would be responsible if anything went wrong.

This last point leads me to raise a significant cautionary note for law and policy makers. The Affordable Care Act currently makes it illegal for health insurance companies to deny coverage or increase costs for pre-existing conditions, including kidney donation. This was not always the case: In the past, kidney donors could be (and were) denied coverage for just this reason.

If the Trump administration succeeds in its ongoing efforts to strike down the ACA, a signature pledge of his campaign, millions of Americans could be left uninsured, current and potential living donors could again become legitimately fearful of being uninsurable at reasonable cost, and other innovative efforts to improve kidney care could also be at risk.

Millions of Americans could benefit from President TrumpDonald John TrumpTrump pushes back on recent polling data, says internal numbers are 'strongest we've had so far' Illinois state lawmaker apologizes for photos depicting mock assassination of Trump Scaramucci assembling team of former Cabinet members to speak out against Trump MORE’s “sweeping set of proposals” on kidney care — I hope he, Congress, and the courts do not undermine those significant improvements by sweeping away the protections provided by the ACA.

Kayla Williams is a Senior Fellow and Director of the Military, Veterans, and Society Program at the Center for a New American Security. She previously served two years as Director of the Center for Women Veterans at the Department of Veterans Affairs, serving as primary advisor to the Secretary on policies, programs and legislation affecting women veterans. Prior to that, she worked at the RAND Corporation, where she did research related to veteran health needs and benefits, international security and intelligence policy. She is the author of “Love My Rifle More Than You: Young and Female in the U.S. Army,” a memoir of her deployment to Iraq.