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).

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.

WELD-What Do Living Donors & Transplant Folks Talk About?

When living donors (women) and transplant professionals (men and women) get together, what do they talk about? Well, if a recent meeting of a local WELD (Women Encouraging Living Donation) chapter at my house is any indication, assorted animated discussions could cover the following:

Transplant surgeons Dr. Aparna Rege, bottom left, and Dr. Bradley Collins of Duke Transplant Center, Durham, NC, with a few local WELD members.
  • Spreading the word of the urgent need for living donors to reduce the 5+ year wait for a kidney for those on the transplant wait lists
  • Transplanting pigs’ kidneys to humans: logistics and ethics
  • Using drones to transport a deceased-donor kidney
  • A live kidney being put with the plane’s cargo but a heart going in the cockpit with the pilot
  • Hamilton, the musical
  • Managing kidney donors’ pain effectively with a combination of meds to reduce or even eliminate use of opioids
  • Taking part in The Big Ask, the National Kidney Foundation’s program to help kidney patients’ family and friends help the patients find a living donor
  • Some African Americans being wary of organ donation, specifically, but sometimes the health care system, generally
  • A transplant center’s setting up a paired donation program, which enables donors and recipients who are not a good match to swap with another pair so as to find a successful match for each pair
  • Solo camping with your dog
  • Comparing current and brand-new rules on allocation of livers from deceased donors
  • New approaches to preventing post-donation constipation in donors
  • Signing up as an organ donor whether or not you choose to have a little heart on your driver’s license
  • A grieving family arguing about whether to honor a young person’s wishes to be an organ donor
  • A young donor concerned about pregnancy, wanting to participate in a study to help provide the answers that elude her now
  • Comparing two surgeons’ hand sizes
  • Camping with the Girl Scouts

It was getting late for a weekday evening, and everyone else had a drive home, but I’ve no doubt we could have found lots more to talk about.

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

Who Says Donate Life Month Is Over? It Needn’t Be!

Now that April is over, so is Donate Life Month. No more special themed events, signs, and PSAs. But the need for organ donors is hardly over: about 114,000 people are still spending years on national waiting lists for a lifesaving organ. Even though it’s at an all-time high, organ donation still falls way behind the need. About 6,500 people on those lists die each year simply because they didn’t get the organ they needed in time. About 16 people die each day because they didn’t get a kidney in time. Sixteen people.

What can we do about it?
First step, of course, is to sign up to be an organ donor after we die. If you’re not already registered, no need to wait for your driver’s license renewal. Just go to registerme.org or organdonor.gov. You can even do it on your iPhone’s health app.

Second step is to tell your family you did. People unfortunately often neglect to make their wishes known to family members, who must confirm the decision and, if there is any ambiguity, at a time of grief, can sometimes overrule the registration.

Third step is to spread the word. Donate Life Month or not, tell everyone you know about the need. I’m always surprised at how little the general public is aware of the crisis.

Fourth step is obviously the hardest, but it’s on the rise and holds the key to shortening the wait for thousands of patients: consider becoming a living donor. A healthy person can donate a kidney (by far the most common living donation), as I did, or a part of their lung, liver, intestines, blood, or bone marrow. I’m not suggesting such a decision be made lightly. Just take a small step and educate yourself on the subject–check out the Resources on this site–and see where it goes.

I just bet you’ll find a number of surprises, so then share what you learn with everyone you can. Maybe you’ll prompt someone else to donate.

Donate Life Month Quiz: 5 True or False about Dialysis

True or false?

1-People with kidney failure have dialysis every few weeks.

False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week.

2-Dialysis sessions usually last 3 to 4 hours at a time.

True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.

3-Dialysis can approximate about half of kidney function.

False—As advanced as it is, dialysis accomplishes only about 20% of normal kidney function.

4-People on dialysis can skip a few sessions if they’re busy or go on vacation.

False—Skipping a session very occasionally is not usually a problem, but skipping several sessions is extremely dangerous and can be fatal as toxins build up in the blood. Patients who go out of town can try to arrange in advance to have sessions at a dialysis center at their destination.

5-Dialysis is an equally effective alternative to transplant for someone with kidney failure.

False—When possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%. People who receive transplants have a 3% mortality rate after 5 years.*

*University of California at San Francisco. The Kidney Project, https://pharm.ucsf.edu/kidney/need/statistics

Guinness Living Donors Record!

Woohoo! Got my commemorative living donors rally tee shirt in the mail, and it has my name on it with the other Guinness record holders! If you zoom in, you just may be able to find my name in the upper left quadrant–alphabetized under “C.”

What a memorable weekend that was! Several living donors gathered at the Bean again this year for an informal reunion. On one hand, I was sorry to miss it–I would have loved to see so many people I met last year. On the other hand, though, I’d kind of like to keep that warm memory special. A reunion couldn’t possibly capture the excitement and the emotion, which I tried to describe in a Facebook post soon after it.

Donate Life Month Quiz: 5 True or False

Here are a few important “facts” about organ donation. Test yourself—and let me know how you did! (Not to worry–I’ll grade on a curve.)

1-Most of the 113,000+ people on the national waiting lists for an organ from a deceased donor are waiting for a heart.

False. More than 80% of them are waiting for a kidney.

2-In the United States, the wait for a kidney from a deceased donor is a matter of months.

False. In many areas of the country, it’s 5 to 10 years.

3-Every year a few hundred people die because they didn’t receive a lifesaving organ in time.

False. About 6,500 people on the lists die while waiting for a kidney each year.

4-A large percentage of people in the United States can be organ donors when they die.

False. Only about 3 in 1,000 people die in such a way that they can be organ donors: generally, in a hospital following a trauma such as a car accident. That’s just 0.3% (yes, I had to look it up).

5-Most living donors are men.

False. Nearly 2/3 of living donors are women.

So, if you’re not already a registered organ donor, you needn’t wait till you renew your driver’s license. You can do it online right now at registerme.org. (There you’ll also find more facts about donation.) And if you’d ever wondered why the wait for a deceased-donor organ is so long, and why donation advocates hope that more people will consider being live donors, now you know the bottom line. There simply aren’t enough organs available.