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.”

Expanding Aid to Living Donors: Dear Committee Members

May 20 was a big day. The committee that advises the federal agency with the power to expand financial aid to living donors held a meeting and heard a dramatic plan from the National Living Donor Assistance Center (NLDAC). The plan would not only markedly expand eligibility but would extend coverage for significant living donor costs like lost wages and childcare and eldercare expenses. Those essential expenses so often stand in the way of would-be donors’ acting on their desire to donate (and save a life).

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The Advisory Committee on Transplantation accepted public comments in advance of the meeting and dedicated some meeting time to hearing from people supporting expanded benefits for live donation. I prepared my comments and sent them to the committee last week. During the online meeting, I listened excitedly to the impressive NLDAC presentation and patiently waited to speak. Alas, because of technical difficulties and the committee’s being behind schedule, most of us never got to deliver our remarks live. This is what I was going to say:

Dear Committee Members:

I’m a living donor in North Carolina. Thirteen years ago I donated my kidney to my 26-year-old son. We were fortunate to live close to one another and near the UNC transplant center. I had a smooth recovery and could have gone back to work in 2 or 3 weeks if it were just a matter of my own health. But like so many other living donors, my recipient was a family member, so I was also a caregiver; we were all devastated when our son needed emergency surgery a week after his transplant. His recovery was slow, and he lived with us for about 2 months. I missed work for much of that time.

My husband and I shared family responsibilities that included our other child–a teenager with her own needs–and my elderly father, whom we had moved down to our town. We both maxed out our paid leave time. With my job, again I was fortunate: I had a supportive supervisor, short-term disability leave, and an employer with a shared-leave policy that enabled colleagues to donate their leave time. I cobbled together partial coverage. My husband did not have the benefit of shared leave donations. Not many potential living donors have such luxuries. In fact, many of the people on the transplant lists have low incomes, and many of their families and friends have little ability to ride out periods of missed pay. So they languish on the wait lists still longer.

NLDAC’s coverage of travel and lodging expenses for donors has saved lives by enabling people to donate who would not have been able to otherwise. The prospect of lost pay affects—that is, discourages—even more potential donors than travel issues do. My son was so lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 years on dialysis, he could have faced another 5 years tethered to a machine 3 times a week, draining his energy, his time, and his spirit. Incidentally, the 5-year survival rate on dialysis is only a little more than a third.

 At an extremely difficult time for our family, we at least had everything going for us: our location, adequate resources, and a supportive employer. I implore you to help someone else’s son avoid that long, dangerous wait for a donor by raising the income cap and extending benefits to cover lost wages and related costs. Thank you.

I’ll have more details on the NLDAC recommendations when we learn how HRSA (Health Resources and Services Administration, part of Health and Human Services) decides to proceed.

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