How Trumpcare Could Screw Over Organ Donors and Recipients

Insurance costs are likely to skyrocket while coverage plummets.
July 27, 2017, 4:00pm
Getty Images/Alex Wong; Getty Images/David Emmite

Yesterday, the Senate voted to proceed to debate on the healthcare bill that could dismantle the Affordable Care Act. The GOP is still being coy with the bill itself, but the precedent established doesn't look good. Everyone from cancer patients to those with chronic illnesses is worried, and there's one group in particular that could suffer under legislation that may strip protections we've grown accustomed to: Organ recipients.

Becoming a transplant recipient is a lot like owning a pet: You've taken a fussy, expensive, life-changing thing that will give you much joy into your life, and now you're stuck together unless something catastrophic happens. Once you've adopted bouncy little heart or energetic kidney, you have to face the maintenance costs, but caring for a transplant organ is significantly more expensive than vet bills. Trumpcare is poised to make that a whole lot worse.

Under the current insurance landscape, some kidney recipients can qualify for Medicare regardless of age, while beneficiaries of these and other organs also rely on Medicaid benefits and use private insurance plans. Prior to the Affordable Care Act, though, this wasn't a given; the ability to exclude people on the basis of preexisting conditions and to cap overall coverage meant that many transplant recipients struggled to access healthcare of any kind, including transplant care.

In 2014, the actuarial experts at Milliman, an independent insurance research firm, crunched the numbers on organ donation, and they're quite high. A heart-lung transplant can cost upwards of two million dollars, for example, while kidneys run more than $300,000 each. The adoption fee, as it were, is just the tip of the iceberg. The immunosuppressive drugs required to keep the patient's body from turning on the organ can cost upwards of $2,500 monthly—and patients also need regular transplant clinic follow-ups, lab work, and other maintenance care. Inexplicably, Medicare only covers the first three years of immunosuppressive drugs for kidney transplant patients, creating a crisis for many when they lose their coverage—especially since some aren't aware of this restriction on their benefits.

Looking at kidney recipients in 2008, prior to the ACA, and again in 2010, just after the law went into effect, researchers found that affordability of immunosuppressive drugs had been a significant obstacle for patient care. Patients had difficulty adhering to their medication regimens, sometimes landing back on the transplant list when their bodies started rejecting donor organs. Other clinics were hesitant to put patients on the transplant list in the first place, fearing that they would lose the organ—even though dialysis is more costly in the long term, and has significant quality of life drawbacks.

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We know, in other words, what the healthcare landscape looks like when transplant recipients don't receive adequate protections. Some are denied transplants because of their income concerns, while others receive donor organs and then struggle to maintain them. The ACA compelled insurance companies to offer coverage, but more than that, it expanded Medicaid, widening access to people who had struggled to get insurance before.

Here's where things get ugly for Americans who've adopted an organ in recent years: They're all sitting on the ticking time bomb of a preexisting condition. While the GOP insists it's not eliminating preexisting conditions protections and it's technically correct, various versions of the healthcare bills proposed by the GOP carve out so many exceptions that the distinction is effectively meaningless. In many versions, for example, states can waive the ten essential benefits required under the ACA, as well as community rating, the two things that mandate insurance providers cover a set of basics (including transplant care) at standardized costs.

That also opens the door to restoring annual and lifetime benefit caps. Proud parent of a set of gently used lungs? You're going to run up against a benefit cap right quick—transplantation alone costs upwards of one million dollars.

Insurance costs for transplant recipients are likely to skyrocket, while their coverage plummets. One kidney transplant recipient fears she could spend as much as $10,000 monthly on premiums alone, before copays and out of pocket expenses of $4,000 or more. "Who makes enough money to afford $14,000 or more a month just for healthcare?" she asks. Who indeed. With a likely simultaneous rollback of the Medicaid expansion, people will find themselves sick and uninsured, with medical needs that can't be put off for the future: Without immunosuppressive drugs, they run the risk of losing their organs and dying.

Those who struggle with their insurance costs and are forced to drop coverage because they can't afford it will be penalized for doing so. The Better Care Reconciliation Act proposed that people be punished if they fail to maintain coverage for two or more months, though it's unclear whether a final bill would include this measure. A "lockout" would bar them from the insurance market for six months. That measure isn't just vindictive: It's also lethal.

And there's another hidden kicker in Trumpcare: Ever wonder where those donor organs come from? Advances in medicine are enabling more and more living donors to step forward and selflessly volunteer a spare organ—a kidney or lobe of lung, a chunk of liver or intestine, even part of a pancreas. They're filling the supply gap that leaves 20 people dying every day on the organ waitlist, sometimes by donating organs to complete strangers, either independently or as part of a donation "chain."

After generously ponying up a body part, these donors may wind up forever on the insurance blacklist as people with preexisting conditions, even though the medical risk of organ donation is relatively small. In kidneys, with a large body of living donor data to draw upon, researchers see a few small increases in risks of kidney problems as well as a small increase in gestational diabetes and hypertension in some patients. Most go on to lead healthy, happy, full lives—just sans a little piece of themselves.

But they'll be caught up in the same measures that trap organ recipients, facing the risk of extremely high costs for health insurance that doesn't cover their needs—including those that are entirely unrelated to the organs they donated. The perceived "uninsurability" of organ donors could contribute to an increase in organ shortages, as otherwise generous, thoughtful people might be forced to think twice about whether they can afford the long-term costs of supplying an organ to someone in need.

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