Waiting for the Gift of Life Can Feel Like an Eternity

More than 113,000 people in the U.S. are on the organ transplant registry waitlist.

Medical stretcher next to a man holding a cooler containing a donated organ

April is National Donate Life Month, when Americans are encouraged to register as organ, cornea and tissue donors. Today, the number of donors and transplants performed in the U.S. is at an all-time high, according to the United Network for Organ Sharing (UNOS). There were more than 36,500 transplants performed in the U.S. in 2018. But if you are one of the more than 113,000 people in the transplant registry waitlist maintained by UNOS, every day can feel like an eternity.

According to David Mulligan, M.D., chief of Yale Medicine Transplant Surgery & Immunology and director of the Yale New Haven Transplantation Center, too many people wait for years to get an organ. “In this part of the country, it’s an average of five years for a kidney—in other parts, it’s 10 years,” Mulligan says. “One thing we’ve done is change how we prioritize organ allocations, to help the sicker patients earlier. But it’s a rough roller coaster for them.”

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Howard Nathan, President and CEO of the Gift of Life Donor Program, Philadelphia, is intimately acquainted with the roller coaster transplant recipients-in-waiting experience, and the transformative difference donors and their families can make through their precious gift.

“Registering to become an organ and tissue donor is one of the purest acts of kindness you can do as a human being,” Nathan says. “Each organ and tissue donor and each donor family selflessly said ‘yes’ to donation in a time of grief, so they could save and enhance the lives of others.”

Even when a donor organ is available, finding the right match with a recipient is a complicated process that is essential to minimizing post-transplant complications, which can lead to organ rejection. First, the donor and recipient blood types must match. Next, tissue typing is performed and certain antigens that cause an immune response in the body are also screened. An organ recipient cannot have pre-formed antibodies to six donor antigens, for which patients are routinely tested. Otherwise the transplant will result in rejection.

Helping patients keep their transplanted organs longer is a key area of transplant research. Serious complications following transplant can occur that threaten the viability of the transplanted organ, and in some cases the patient’s life. For example, after a kidney is first transplanted, there are often surgical complications such as wound infections and clotting of a transplanted artery or vein. Other post-surgery complications include hematoma or pooling of blood and collected lymphatic fluid. Despite these surgical complications, one-year and five-year allograft survival rates of greater than 80 percent and greater than 50 percent, respectively, have been achieved for most organs, with kidney survival rates being the highest of all organs.

Unlike the improvements seen in short-term outcomes for transplant recipients over the past 10 to 15 years, long-term outcomes have not improved. There are other complications including rejection, which can be cellular and easily treated, or antibody mediated rejection (AMR), which causes 60 percent of all transplanted kidney failures.  Currently there is no treatment for AMR that is approved by the U.S. Food and Drug Administration.

However, there is hope on the horizon. CSL Behring, the fifth largest biotechnology company in the world, is currently conducting a clinical study of a potential treatment for kidney transplant recipients experiencing a serious complication after transplant that may cause them to lose the function of their transplanted organ. CSL Behring’s study is to evaluate the efficacy and safety of this treatment as an add-on to the standard of care for the treatment of refractory AMR in adult renal transplant recipients.

Making more organs viable and available for transplantation is another important area of research to address the many thousands of patients waiting for a precious organ. Organs may be deemed unsuitable for transplant because of certain conditions and diseases, damage to the organ caused by an accident, or when a donor’s condition changes too quickly for the donation to be completed while the organ is still viable.

“We’ve done and continue to do a lot of research in this area,” Mulligan says. “When a prospective donor dies, one thing we do is take the organ out of the body and put it in a perfusion machine, which pumps solutions that help preserve the organ during transfer. We’re studying warm and cold perfusion, and the agents that need to be in there to optimize the function of the organ.”

What does the future hold for organ transplantation? Research is being conducted in Europe using stem cells to regenerate a kidney with chronic damage so that a transplant will not be necessary. Another area of study is generating a new liver from a person’s own cells.

Despite the progress that has been made in transplantation and the promise of future technologies, the reality is that 20 people on average die every day in the United States because the need for organs far exceeds the current number of available life-saving gifts. It is a reality that fuels Nathan’s passion as an advocate for organ donation.

“Being able to orchestrate the transition from someone’s deepest loss to new life still gives me chills, every day is a tremendous privilege,” Nathan says. “I am so proud of my team at Gift of Life and the work that we do in partnership with the transplant surgeons and the transplant teams at the hospitals. All of this works only because of the generosity of those who gave the gift of life.”

To register as an organ donor in the U.S., please visit donatelife.net.