Chronic kidney disease is a silent killer for the 23 million patients in this country who have it. (Individuals with diabetes or hypertension are at the greatest risk.) But unlike the iconic pink ribbon associated with breast cancer awareness, the Let Life Bloom logo for live organ donation has no such instant recognition. And because of that, it is not as clearly recognized that solutions are fairly simple.
November 14-16 marks the annual National Donor Sabbath, sponsored by the U.S. Department of Health and Human Services. It is designed to raise awareness of the need for organs for transplantation and to inspire people to sign up as a donor in their state registry. But by commemorating the generosity of deceased donors, the occasion doesn’t pay respect to living donors.
For many of the 615,000 patients whose chronic kidney disease has progressed to end-stage kidney disease, transplantation is the best option. But because of the organ shortage, only about 16,000 patients get a kidney transplant each year. That is a small number out of the more than 101,000 patients waiting for a deceased donor transplant, according to the United Network for Organ Sharing (UNOS).
To be sure, the government’s protectionist position is laudable. But should this paternalistic stance deter patients from learning about all of their treatment options?
Because of the shortage, patients are waiting longer and longer for a deceased donor kidney transplant, and the longer patients wait, the more likely they will die while waiting, as Dr. Arthur Matas, a transplant surgeon and director of the Renal Transplant Program, and his colleagues at the University of Minnesota recently reported in the American Journal of Transplantation.
Last year, 4,476 patients died while waiting for a kidney transplant. Instead of waiting, patients can get a transplant from a living donor. As UNOS data show, patients who receive a kidney from living donors generally live longer lives and have transplants that last longer than patients who receive a kidney from deceased donors or patients receiving dialysis treatment.
If the option of live kidney donation was better understood, more people would live. And the costs to society would be lower as well. As the USRDS 2013 Annual Data Report shows, hemodialysis—the most common treatment for renal disease—costs $87,945 per person per year. Transplantation, however, costs $32,922 per person per year. After the surgery, transplant recipients must take many medicines—including anti-rejection medicines so that the patient’s body does not reject the new kidney—for as long as the transplant works. These cost, on average, $10,000-$14,000 per year. Medicare picks up the tab for 80 percent of the costs of these medications up to three years. Thereafter, private insurance, Medicaid, or the patient’s own resources must cover these and other routine medical visit and care costs. Overall, total Medicare expenditures for hemodialysis were $24.3 billion, and $2.9 billion for kidney transplantation, in 2011.
So why don’t more patients get a live donor kidney transplant—or at least consider it?
In my research on attitudes about live kidney donation, I’ve found that many patients with end-stage kidney disease and the general public don’t even know about the option. Some also have misconceptions about living donation and do not realize that they can live with just one kidney. Many patients feel uncomfortable with living donors undertaking harm to help the patient even though most living donors lead normal lives after the procedure, just like people born with one kidney.
As with any surgery, living donors take risks—medical and psychosocial. But to help ease the decision about donating, if living donors were to get kidney disease—even when totally unrelated to their donation—they get to move to the front of the line for a deceased donor kidney. While most of these issues have received a lot of attention by health researchers, few have sought to increase general public awareness of living donation.
No federally sponsored public education campaigns cover living donation, even though the UNOS is responsible for “educating the public about the importance of organ donation.” Instead, public education campaigns typically focus on deceased donation, like the National Donor Sabbath this month.
The federal agency that oversees organ donation, the Health Resources and Services Administration, an agency of the U.S. Department of Health and Human Services, has taken a stand to not promote (and in recent years even shied away from) research grants that raise awareness of live kidney donation.
Their concern has to do with the small number of rigorous studies on the long-term risks to living kidney donors. For example, a recent study by Dr. Abimereki Muzaale, a transplant researcher, and his colleagues in the Epidemiology Research Group in Organ Transplantation at Johns Hopkins, published in the Journal of the American Medical Association, found that kidney donors have a higher lifetime risk of end-stage kidney disease resulting in a need for a transplant themselves. That risk is 90 per 10,000, compared to healthy non-donors matched by demographics of 14 per 10,000.
But such studies only track living donors’ outcomes up to 15 years after donating. Without knowing much about what happens beyond seven-15 years or how living donors fare by ethnicity, age, and gender, the government does not want to be accountable for promoting risk to healthy individuals.
To be sure, the government’s protectionist position is laudable. Helping others through live donation should be safe to do. Bad outcomes for donors could jeopardize public trust in transplantation and that could lead to fewer donations and transplants overall.
But should this paternalistic stance deter patients from learning about all of their treatment options?
As long as potential live donors are informed of all risks, benefits, and alternatives of the donation process, and the potential benefits outweigh the risks, then living donation can be ethically, legally, and medically justified. Once informed, potential live donors have the opportunity to express their self-determination to accept the risks and donate or choose not to donate.
The transplant community has recently ramped up its efforts to educate potential living donors initiating donation evaluation so that they better understand what they are getting themselves into.
UNOS expanded its informed consent policy recently on the medical and financial risks that transplant hospitals must disclose to living kidney donors in the name of one of its strategic goals of protecting living donor safety.
But all of these strategies reach people who already know about living donation. Anyone who might consider donating but is unaware of the possibility is still left out.
Chronic kidney disease is a public health problem. Increasing the number of transplants is a national priority. As deceased donation rates have plateaued over the past decade, living donation is an important solution for addressing the organ shortage. Public education campaigns are needed to raise awareness.
If we help spread the word about the option of living kidney donation, we can help patients with chronic kidney disease live a longer, better life.