You already may know that virtually all (yes, I do know of one exception) kidney transplant patients, unless they got the new kidney from their identical twin, have to take anti-rejection meds for the rest of their lives. That’s so their body’s immune system doesn’t see the organ as a foreign body and pounce on it the way it’s designed to do.
You may also know that Medicare provides health coverage for patients of any age with kidney failure—ESRD, or end stage renal disease (a name, incidentally, that scared the hell out of me when we were first told that was my son’s condition). That’s a good thing, right? Of course, though, there are a few catches, like needing to accumulate enough work quarters or credits, as my son described in a post here recently.
But here’s the real, global problem. For some unfathomable reason, the coverage ends 36 months after the transplant.
That might make sense by some logic if most patients were required to take those anti-rejection meds for a maximum of 3 years. No way–see first sentence of this post, which points out that virtually all patients have to take them “forthe rest of their lives.”
Now, you may be thinking, well, these drugs are probably available for a nominal charge given that these are life-and-death medications. Think again: they run into the thousands of dollars per month for direct pay. So, depending on what kind of health insurance you have—and if indeed you have any at all—you may very well not be able to afford them. You know what happens when people skip doses or stop taking these essential medications completely? Their bodies reject the transplanted kidney and they’re back on dialysis—or they die.
Clearly, it makes no sense either medically or morally to stop this life-sustaining drug coverage at an arbitrary point, when it’s so obviously still needed. Medical and moral justifications should be reason enough, but there’s a strong economic one, too: in the long run, an organ transplant costs the federal government far less than years of dialysis for those patients. In fact, an analysis by ASPE, a federal agency within the US Department of Health and Human Services, concluded in May 2019 that extending the Medicare drug coverage beyond the 3 years “would result in ten-year accumulated savings of approximately $73 million.” [https://aspe.hhs.gov/pdf-report/assessing-costs-and-benefits-extending-coverage-immunosuppressive-drugs-under-medicare]
Bipartisan coalitions in both the House and the Senate are poised to introduce legislation soon after the August recess to extend the Medicare drug coverage. Tell your senator and member of Congress that supporting this legislation is a no-brainer for families–like mine–struggling with a loved one’s kidney failure and for society in general.
Thirteen years ago this week, my son and I went into UNC transplant center with four kidneys between us. When we left a few days later, we still had four, but he had most of them. He still does. I’ve written here and elsewhere about “our” story, so this is his chance to share his perspective on this momentous experience, which had begun 2 years earlier.
Thirteen years ago I received a kidney transplant from my mother. I appreciate this kind act, but knew she would not disappoint. I also am glad to know that she has benefited from this act, and has become an activist for living kidney donation.
Here’s some background: when I was in college, I was diagnosed with IgA nephropathy. It was discovered in lab work after I had gotten sick with strep. Years later I learned that that was often a trigger for my type of kidney condition. I had no symptoms, though, and was otherwise healthy—I didn’t have diabetes or high blood pressure, which are common causes of kidney failure—and I was thin, with no family history, so the nephrologist said it was something to monitor and take seriously, but wasn’t expected to get much worse, at least not in the foreseeable future. I had regular lab work throughout college.
At my first post-college
appointment, the blood test results showed that my kidneys were failing; I
learned I would soon need dialysis and then would have to be on it until I
could receive a kidney transplant. The doctor first told me I might have to
start dialysis in a year, but it ended up being only 3 months. I had just
graduated college, and I was nervous but hopeful about the future. Before that
appointment I had no idea I had kidney failure, let alone that I’d be on
dialysis in 3 months.
Dialysis was the worst
experience of my life. It began with two painful insertions of needles into my
arm, followed by being connected to a dialysis machine 3 hours at a time 3 days
a week. With prep time and post-time, plus another hour for transportation, it
was more than half a day. When I got home I just didn’t feel like doing much of
anything. I didn’t feel like myself and couldn’t relax. I had time for little
else. I felt like my life was under a
My parents began the
process of applying to be donors. My dad was eliminated for having had a kidney
stone and my sister was too young at the time. My mom made it through the first
round, but the hospital wouldn’t allow her to begin the actual testing because
I did not have health insurance that would cover the donor, which is usually
part of the recipient’s insurance. Because I was no longer a full-time student,
I wasn’t covered by my parents’ health insurance. Had the Affordable Care Act
been in effect then, since I was under 26 I could have remained on my parents’
plan. Medicare has an ESRD category for kidney failure patients, but it required
a certain amount of “work quarters” to qualify. This was particularly upsetting
because having just been in college and now with my health suddenly failing, I
didn’t yet qualify. I then had to earn work quarters while on dialysis, which
limited how much I could work.
I felt horrible about the
awful luck that put me in this situation. I was angry at a health care system
that puts such policies in place. I believe I have a right to health care. Had
insurance not been an issue, I could have spent 1 year less on dialysis and
gotten my transplant a year earlier. And if, instead, my kidneys had failed a
year later, this policy might have been moot because I probably would have earned
enough work quarters by then.
Meanwhile, for more than a year my family made countless phone calls and wrote pleading letters to the hospital and anywhere we could, hoping I could somehow get a transplant soon. After a lot of advocacy, the hospital finally agreed to take on the costs and allowed my mom to begin the testing. It even agreed to pay for the donation surgery itself if Medicare did not come through, but I accumulated enough work quarters by then.
I knew that if my mom couldn’t donate to me, there were no other potential donors at the time. So I was really crossing my fingers after each of her tests, knowing that she could be disqualified at any point.
I checked into the
hospital the day before the transplant and had dialysis there. When I prepped that
night I was mistakenly told I could use the special soap for my hair, and it
got in my eyes. They were still stinging the next morning, which naturally increased
my nervousness about the transplant.
Transplant day finally
came after 1 year and 8 months of dialysis. I vaguely remember being wheeled into
intensive care after the surgery. From what I could tell, the doctors thought
it had gone successfully. When my dad and sister came in to see me and asked me
how I was, my response was “could be worse.”
I recovered at my
parents’ house for more than a month. I still had several things attached to my
body. I had frequent doctor’s appointments and usually would have something
removed/disconnected each time: a stent one day, a catheter another. Slowly, I
began to regain my life and at a point feel like I did before the transplant
and then, eventually, feel better than I had on dialysis.
By no means is being a transplant
recipient easy—there are a lot of things to keep track of, like medicines,
appointments, protection from getting sick. There will always be potential
hazards, and I’ll always need to take extra precautions. I check expiration dates
a lot more closely than before and cancel get-togethers with family and friends
if one of them is sick even with a cold. My immune system will always be
suppressed to keep it from rejecting my mom’s kidney.
But life as a transplant patient is so much better than the traumatic experience I went through as a dialysis patient. –Paul Offen, Chapel Hill, NC
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.”
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.
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.
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.
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 CenterA 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 NetworkLiving 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.
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.
* 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: email@example.com