Don’t All Donors Deserve Donor Shield?

I’ve been emailing, calling, and visiting state legislators and members of Congress for a long time about supporting and protecting living donors. I don’t mean the feel-good kind of support that calls us “heroes” and “awesome folks” but takes no action. I’m talking about finding meaningful ways to remove hurdles that can be deal breakers for so many people who might otherwise consider donating their kidney. While Congress and legislators have been dragging their feet, a terrific model plan has been hiding in plain sight: the National Kidney Registry’s Donor Shield.

First, a little background that may be familiar to some of you: nearly 100,000 people in this country wait years for a kidney, but only about 23,000 kidney transplants were performed last year. Meanwhile, thousands die every year because they didn’t get a kidney (or other organ) in time. For the foreseeable future, our best hope of dramatically changing those appalling odds is through living donation. So, simply put, we need to make it easier for people to manage being live donors.

How? For starters, by providing paid leave for all living donors for donation-related time off work–not just for federal and some state employees (not everyone has paid sick leave, and those who do shouldn’t have to use up their leave time); reimbursing for travel and lodging costs if donating far from home; and covering “incidental” expenses (which can feel anything but incidental: think childcare or eldercare).

You may already know that NKR facilitates paired donation (aka kidney swaps) through the world’s largest database of potential recipients and live donors. If you’ve never heard of Donor Shield, remember that name even if you don’t plan to be part of a paired donation. NKR automatically provides Donor Shield, which encompasses those common-sense protections and so much more, to all its living donors. But if you donate at any of the 90 U.S. transplant centers that’s affiliated with NKR– even if you’re not part of a paired donation!–you would get Donor Shield, too. I’m happy to see that the University of North Carolina Hospitals, where I donated to my son in 2006, is now affiliated with NKR.

The transplant center pays the Donor Shield premium, so there’s no charge for the donor. And there’s no cost to the recipient either. I hasten to add that, because I was shocked–and infuriated–to learn that the National Living Donor Assistance Center bases its eligibility for donor assistance on the recipient’s household income. NLDAC apparently figures that the recipient, who’s already contending with surgery and lost work time, should simply reimburse the donor for any such expenses.

In addition to the benefits and protections for living donors mentioned above, which legislators and federal agencies have been studying for years, Donor Shield also includes additional attractive features, such as providing legal support in the unlikely event that a donor is fired for taking time off to donate or encounters insurance discrimination; and in the rare event that a donor later needs surgery for a donation-related complication that isn’t covered for any reason, Donor Shield will cover it along with lost wages, and travel and lodging expenses for the donor and a companion. That’s at any point, no matter how many years after the donation. And there’s no income-based eligibility for donor or recipient.

Not only are these measures the right thing to do, they obviously save lives by making more transplants possible and taking people off the waitlists. If the moral argument doesn’t sway the powers that be, the economic argument should. Shortening the wait for a kidney, and reducing or even avoiding time on dialysis, saves hospitals and the federal government millions of dollars.

Even if the transplant center you’re donating at isn’t affiliated with NKR, it’s worth asking if they would agree to provide Donor Shield (they can obtain it). The more donors who request it, the more likely centers are to get on board. If only paired donation, NKR, and Donor Shield had been available back when I donated!

The Big Ask, The Big Give

After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These exciting options were unthinkable back when we learned that my son Paul’s kidneys were failing. Yes, I was ultimately able to donate to him in 2006, and so glad I did, but we had no back-up plan if I hadn’t been able to donate. I was relieved to know that someday when Paul needs another transplant, that these options now exist.

Betsy, my co-author,* and I had been invited to be on a panel to tell our story and take questions at the National Kidney Foundation’s Big Ask, Big Give program at the University of North Carolina’s Rex Hospital in Raleigh, NC. It’s understandably hard for most people to go public about such a personal need (brother, can you spare a kidney?), and it’s easier for loved ones to spread the word. The program provided useful resources and concrete advice, with step-by-step plans on telling “your story” or your loved one’s. The cautiously hopeful attendees sounded resourceful and impassioned.

But when I couldn’t fall asleep that night, something was nagging at me, and my excitement turned to righteous indignation. Damnit, people facing kidney failure and their families shouldn’t need to think about fundraising or how to word the biggest ask of their lives. They have enough things on their plate. Soon my righteous indignation turned into outright anger when I recalled at least two attendees’ mentioning that their family member on dialysis had lost their job because of needing to miss so much work. What kind of a system allows these shameful situations to happen?

My inclination was to condemn the companies that had pulled the rug out from under these vulnerable employees, but then I realized that it’s not that simple, of course. Big companies can better afford to be supportive and accommodating in the face of frequent or long absences and the need to hold a job open. What about smaller companies or mom-and-pop establishments that are themselves just getting by? That’s why it’s the system that needs fixing. Sure, not all big companies go the extra mile anyway, so absolutely, let’s give a shout-out to those that do: in my case, RTI International. I benefited from a shared-leave program through which generous, anonymous colleagues donated leave time when I’d exhausted mine.

Humane and compassionate employment support at such a time ought to be a right, not a perk.

Living donors are now protected under the Family and Medical Leave Act (FMLA), but the FMLA applies only to government employers and to private employers with at least 50 employees. (And remember, that’s unpaid leave!) Incidentally, even the Americans with Disabilities Act (ADA), which mandates reasonable accommodations for people with disabilities, applies only to companies with at least 15 employees. I’m not an economist, but it seems like a no-brainer that we need to be providing subsidies or tax breaks to enable small firms to provide paid leave and job protections for donors and recipients.

For example, if federal laws (it shouldn’t matter what state you live in) ensured that no one could lose income (much less their job) to be a living donor, more lives could be saved. Sure, money isn’t the only consideration in someone’s decision to donate, but it’s very often a deal breaker to anyone without sick leave.

The recipient’s health plan covers the donor’s medical expenses, but few insurers, like United Healthcare, include any necessary travel and lodging costs for donors who need to travel far to the recipient’s transplant center. Our tax system should allow credits, not deductions, for kidney patients’ own medical expenses and for reimbursing their donors’ nonmedical expenses.

In a recent post, I described the National Living Donor Assistance Center’s (NLDAC)’s proposal to expand its coverage to include lost wages and related childcare or eldercare expenses. NLDAC currently covers travel and lodging expenses, which is great, but lost wages and additional out-of-pocket expenses affect far more potential living donors than the need to travel. Some living donors spend thousands of dollars to offset their uncovered costs; at the same time, each one saves the healthcare system an estimated $145,000.

No one’s suggesting paying donors for parting with their kidneys–only that it shouldn’t cost anyone money to do so. Expanding donor assistance would go a long way toward making living donation financially neutral. It’s not only the cost-effective thing to do, it’s the right thing to do.

*on our book in progress: “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”

Good News for Living Donors: Financial Assistance!

You may already know that the costs of the donor testing and surgery are covered by the recipients’ insurance. That’s true whether they have Blue Cross or any private insurance, Medicare, or Medicaid (usually—every state is different). That’s great, right? Absolutely, particularly if you have adequate paid sick leave and no additional childcare or travel and lodging expenses, that is, if the recipient’s transplant center is near you. And, fortunately, job security is now guaranteed for living donation under the Family and Medical Leave Act (FMLA).

But what if you don’t have much if any personal sick leave? The good news is that there are growing options. If you’re a federal employee, you’re entitled to up to 30 days paid leave a year for living organ donation. Most states have similarly begun to offer leave for their state employees, but not necessarily paid leave, so if you’re a state employee, ask the transplant center about the specific policy in your state. More than a dozen states are also starting to extend such benefits to private employees. The National Kidney Foundation has a terrific state-by-state list of donor leave laws and tax deductions/credits for living donors.

In general, in recent years (long after I donated to my son in 2006), several new sources of financial assistance have popped up, and several old sources are expanding eligibility and the expenses they cover.

Here are a few to check out:

*National Living Donor Assistance Center A federally funded program, NLDAC provides substantial financial assistance to potential living donors for out-of-pocket expenses for travel, food, and lodging, and assistance to low-income donors who do not have other compensation or reimbursement.

Donor Care Network Living donors who make $62,000 or less per year may be eligible for reimbursement of up to 4 weeks of lost wages. Also available: travel and lodging reimbursement, life and disability insurance, and legal representation. The program works with 12 transplant centers across the United States, so donors can get testing closer to home if needed.

Living Organ Donor Network Some transplant centers participate in this initiative that’s part of the American Foundation for Donation and Transplantation. It provides limited life/disability insurance to the living donors who get care at participating centers.

American Living Organ Donor Fund (ALODF) A nonprofit organization founded by a kidney recipient, its mission is to protect living organ donors from out-of-the ordinary medical and financial hardships through education and financial aid.

American Transplant Foundation ATF offers limited donor assistance grants, through a few transplant centers.

Renewal This orthodox Jewish charity provides information and resources for donors and recipients.

American Kidney Fund This huge nonprofit dedicated to fighting kidney disease mainly helps kidney patients but also provides small grants ($100/year) to living donors. It’s not much, but it’s something.

American Society of Transplantation (AST): Live Donor Financial Toolkit Although this is not a source of funds, it’s an invaluable practical resource to help potential donors in the donation process. Discusses costs in detail, what to expect, and risks; also offers ideas and links.

State-specific nonprofit programs are popping up all the time. Here are a couple of major ones. Ask your nurse coordinator about programs in the state where you or your potential recipient resides.

Georgia Transplant Foundation This Georgia nonprofit was founded in 1992. Living donors can apply for a financial assistance grant if either the donor or recipient resides in Georgia.

Iowa Anatomical Gift Public Awareness and Transplantation Fund Iowa residents who are donors can apply for assistance with certain expenses, up to $4,000.

* At this writing there is a movement in Congress, launched by Washington Rep. Jaime Herrera-Beutler, to expand NLDAC’s coverage to include lost wages. Rep. Herrera-Beutler’s husband donated his kidney to their toddler a few years ago. Contact your representative and ask him or her to support these important efforts. Be sure to share your own story with them.

If you know of other important sources of financial aid for living donors, please let me know: carol.kidneydonorhelp@gmail.com