“It is so important for the general public to know that signing up to be an organ donor will never result in first responders providing them with less care should they be in an accident.”
Amy Feldman, M.D., Ph.D., Medical Director of Pediatric Liver Transplant, Children’s Hospital Colorado Page 04
Baia Lasky, M.D., Divisional Chief Medical Officer, American Red Cross Page 05
A look into the bold solutions underway to address the rising issue of organ nonuse.
More than 100,000 people are still waiting for a lifesaving transplant in the United States, and while organ donation has grown, the number of organ transplants has not kept pace. Most alarmingly, many organs donated by generous families are not used.
Several factors contribute to organ nonuse. Once an organ is recovered, time is of the essence to place it with the right recipient. Matching an organ with a patient and securing acceptance from a transplant center is a complicated process. The current allocation system can be cumbersome, and Organ Procurement Organizations (OPOs) sometimes offer an organ to multiple centers hundreds of times. Ultimately, a surgeon may decline an organ in the hope of finding a “perfect” match for their patient. Repeated declines consume valuable time and often render organs nonviable.
Working toward a solution
Alleviating organ nonuse is a community effort, and the Association of Organ Procurement Organizations (AOPO) is taking immediate steps to address it.
Over the last year, OPOs have launched a series of collaborative forums to achieve several core objectives: bring leaders in donation and transplant together with hospital executives; identify and break down barriers preventing organs from being accepted; and share strategies used by top centers across the country that are proven to reduce organ nonuse, increase transplantation, and improve patient outcomes. These collective efforts are vital to ensuring that every donated organ has a chance to save a life and that the invaluable gift of donation is honored.
WRITTEN
BY
Dorrie Dils President, Association of Organ Procurement Organizations (AOPO)
Supporting living organ donation through paid leave can transform lives, reduce waiting time, and inspire a culture of giving.
The American Society of Transplantation (AST) is urgently reaching out to employers across the United States with a crucial message. They encourage companies to support living organ donation by offering paid leave for employees who become living donors.
Currently, over 100,000 people in the United States are waiting for life-saving organ transplants, and 16 people die every day while on the waiting list. These numbers highlight how crucial it is for more individuals to consider becoming living donors. By offering paid leave, employers can make it much easier for employees to donate without the stress of losing income.
The American Society of Transplantation’s Living Donor Circle of Excellence program gives employers a platform to showcase their commitment to supporting living organ donation through paid leave policies. Joining the program is free for companies and recognizes those who prioritize the health and well-being of their employees and the community.
Currently, 183 companies are part of this program, covering 2.7 million employees. This united effort demonstrates the significant role businesses can play in encouraging organ donation.
The emotional aspect of organ donation is profound. Every day, brave individuals decide to donate a kidney or liver. These decisions stem from personal
experiences and a deep desire to help others.
“Organ donation and transplantation is extremely personal to me,” said Brooke Iarkowski, the American Society for Transplantation’s community program manager, who became a non-directed living kidney donor by utilizing the Circle of Excellence Leave program. “I watched my dad give my mom the gift of life through living donation nearly 15 years ago. When I saw my mom come out of surgery and noticed the immediate changes in her health, I knew I wanted to do that for someone one day.”
Brooke’s story is just one of many that illustrate the profound impact of living organ donation on both the donor and the recipient.
“I am so thankful AST supported me emotionally and financially through the process of donating a kidney. It allowed me to heal without the worry of missing a paycheck. I don’t know if I would have been able to give this gift without that support.” Brooke’s story emphasizes how paid leave policies can encourage more people to consider becoming living donors.
The message is clear: together, we can change lives and offer hope to those waiting for organ transplants. By advocating for paid leave policies for living organ donors, we can help remove barriers and inspire more individuals to take this important step.
Written by American Society of Transplantation
Learning that your child needs an organ transplant is incredibly scary for any parent. As their primary advocate, you want to ensure they get transplanted quickly and have a successful long-term outcome.
Unfortunately, in the United States, the number of people in need of transplant exceeds the number of available deceased donors. Every year, children die awaiting transplant because no organ is available.
Through multi-listing, parents have the opportunity to have their child listed not only at their local hospital, but at other hospitals across the country.
While selecting a pediatric transplant program, parents should consider these three factors:
• What is the hospital’s average waitlist time?
• Does the hospital have an experienced living donor program?
• What are the hospital’s post-transplant patient outcomes?
Short waitlist times
The more time a child spends on the waitlist, the sicker they become. Long waitlist times are associated with morbidity, mortality, and developmental delays, therefore, it’s essential to find a hospital with short waitlist times.
“Our average waitlist time at Children’s Colorado for pediatric liver transplant is less than two months, compared to the national average of eight months,” said Amy Feldman, M.D., Ph.D., medical director of Children’s Hospital Colorado’s liver transplant program.
Living donation
For children in need of a new liver or kidney, deceased donors aren’t the only option. A living person can donate one of their kidneys or a piece of their liver to a person in need, called living donation. Living donation increases the number of available organs, especially small organs for pediatric patients, and results in better post-transplant outcomes.
Even if a child doesn’t have a directed donor — a donor voluntarily directing the organ to a specific person — they can receive an organ from a person who donates to an unknown recipient, known as a non-directed living donor.
“It’s a huge opportunity to increase the donor pool,” said Margret Bock, M.D., M.S., Children’s Colorado’s medical director of kidney transplant, emphasizing the importance of having a living donor program.
“We start looking for a living donor right away when a child is evaluated for transplant,” Feldman added. “Living donation allows a child to get transplanted before they develop severe liver failure.”
Success through multidisciplinary care
The ultimate goal of transplant is for a child to live a long, healthy life. Delivering excellent patient and organ survival rates for children with complex disease is essential to the success of a transplant program. Multidisciplinary care, which brings together a team of doctors from various disciplines to collaborate on comprehensive and coordinated patient treatment, is critical to this mission.
“We have exceptional multidisciplinary transplant teams who work well together,” said Michael Wachs, M.D., Children’s Colorado’s surgical director of abdominal transplant. “This team mentality has allowed us to try new approaches faster than more siloed programs, create better experiences for patients and families, and save more lives.”
Take, for instance, the case of a toddler with a rare metabolic disorder that had resulted in severe, end-stage heart failure.
“Given the child’s diagnosis, other centers were hesitant to consider the patient a candidate for transplantation,” said Matthew Stone, M.D., Ph.D., Children’s Colorado’s surgical director of heart transplant. “Following multidisciplinary evaluation and planning, we accepted the patient for transplant, and she is now three years post-transplant, and an active and healthy child.”
“Children’s Colorado is a national leader within the field of transplant because of its willingness to accept complex patients who have been turned down by other centers,” said Melanie Everitt, M.D., Children’s Colorado’s medical director of the heart transplant program.
At Children’s Colorado, transplant outcomes are impressive. Between Jan. 1, 2021, and June 30, 2023, the one-year survival rates were 100%, 94%, and, 95% for kidney, liver, and heart transplant, respectively; which is at or above expected outcomes.
Part of a successful transplant also includes being able to get a child back home as quickly as possible.
“Children and families thrive when we can get them back to their local communities,” Everitt emphasized. “We do this by partnering with their local team to provide excellent care close to home. This allows quicker return for parents to work, patients and siblings to school, and reunification of the family and community.”
Written by Omar Sommereyns
Our panel of experts weighs in on how the medical system can support holistic care for pediatric transplant patients of all ages.
INTERVIEW WITH Amy Feldman, M.D., Ph.D.
Medical Director of Pediatric Liver Transplant, Children’s Hospital Colorado
What are the key factors that determine a child’s eligibility for a transplant, and how do transplant teams prioritize pediatric patients on waiting lists?
Amy Feldman: In the United States, all people are placed on an organ waiting list with a score that is designed to capture medical urgency and risk of mortality. The score is derived from objective data.
Melissa McQueen: Several key factors determine a child’s eligibility for pediatric organ transplantation. The severity of the child’s medical condition, particularly in cases of severe organ failure or life-threatening issues, is a primary consideration. Age, size, and underlying diagnoses, like congenital defects or hereditary conditions, also play a role. Immunological compatibility, including tissue typing and blood type, is essential to prevent rejection.
Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the longterm medication regimen for pediatric patients, and what are the key challenges in
INTERVIEW WITH
Melissa McQueen Co-Founder, Transplant Families
ensuring adherence?
Udeme Ekong: As teens get older, caregivers start giving their teens some independence. However, if they fail to maintain oversight, poor medication adherence often results. Pediatric transplant programs have begun to recognize the importance of formal transition programs. These programs tend to start at age 12 and involve educating teens about their disease, their medications, ordering medication refills, and making their clinic appointments. Importantly, transition programs are not one-size-fits-all.
What recent advancements in pediatric transplant surgery or post-operative care have improved outcomes for children, and what promising innovations are on the horizon?
AF: The field of pediatric transplantation has improved significantly over the last decade, resulting in better short- and long-term outcomes for pediatric recipients. The recognition that transplant recipients need significant multidisciplinary care has led to the development of collaborative teams that include
surgeons, medical subspecialists, anesthesiologists, psychosocial experts, and nutrition experts.
How can we increase organ donation rates, particularly for pediatric patients, and what role do education and advocacy play in raising awareness about the need for pediatric organ donors?
UE: The pediatric liver transplant community continues to advocate for splitting livers. When an adult is primary for a liver offer, the liver is split, with a smaller portion going to the baby and the remaining to the adult.
Another strategy that increases organs for children is domino liver transplantation. Here, a child with a metabolic disease that does not affect the liver gets an organ offer, and the liver of the child with the metabolic disease is removed and given to another child with a primary liver disease.
MM: Advocacy efforts, including personal stories from transplant recipients and donor families, can inspire action and drive legislative reforms. By building a culture of awareness, we can increase donor registrations, keep children a priority, and save more lives.
INTERVIEW WITH Udeme D. Ekong, M.D., M.P.H., FAASLD Attending Physician, Pediatric Hepatology and Transplant Hepatology, Medstar Georgetown Transplant Institute
AF: It is so important for the general public to know that signing up to be an organ donor will never result in first responders providing them with less care should they be in an accident. Organ donation can make something positive come out of something horrible.
What are some of the key factors that influence the long-term success of pediatric transplants?
MM: The long-term success of pediatric transplants relies on medical management, treatment adherence, psychological support, and attention to these children’s growth. Transplant teams must prioritize quality of life by helping children return to normal activities, like school, sports, academic progress, and social interactions. Preparing for the transition to adult care ensures continuity. By offering holistic and consistent multidisciplinary care, teams help children thrive and achieve the best possible quality of life post-transplant. The goal is to achieve the best outcomes. We see that is possible, with many pediatric recipients living more than 30 years with their original gift of life.
We are navigating lifelong care for our youngest and most vulnerable transplant patients.
Children represent a uniquely vulnerable population within the healthcare system. Their physiological, developmental, and psychological needs diverge significantly from those of adults, necessitating specialized medical approaches. Pediatric patients, particularly those with congenital issues requiring complex treatments like organ transplants, face unique risks and challenges.
Prioritizing pediatric transplant recipients
Children are not merely “small adults.” Their bodies and minds are in continuous states of growth and development. Innovations in medical technologies and treatment protocols must therefore be tailored to their specific needs.
Right now, there is a modernization effort being led by the Health Resources and Services Administration to improve the transplantation system in the United States. Until recently, 1 in 20 children awaiting transplants died on the waitlist. Modernization efforts within healthcare must keep safeguards that protect children.
Unique challenges for patients and caregivers
Children undergoing transplants face many challenges distinct from those encountered by adult patients. Children are more susceptible to complications like rejection and infections due to their developing immune systems. The management of immunosuppressive therapy requires careful balancing to avoid compromising the child’s growth and development while preventing organ rejection.
Parents of pediatric transplant patients also navigate a labyrinth of emotional and logistical challenges. The psychological burden of caring for a chronically ill child can be overwhelming. Coordinating care, adhering to complex medication regimens, managing frequent medical appointments, and facing large medical bills add layers of stress.
Transitioning from pediatric to adult care can be a very stressful time for teens. Their entire life is ahead of them, but so are looming commitments to medical procedures and bills that their peers do not have to face. This period is fraught with risks and challenges. Adolescent transplant recipients must assume greater responsibility for their health, such as managing medications, attending appointments, and monitoring their condition. The shift to adult care can be daunting, as it often involves moving from a family-focused, supportive pediatric environment to a more autonomous, independent adult healthcare setting.
Despite these challenges, a well-managed transition to adult care can lead to significant rewards. Transplant recipients can gain a greater sense of independence, and their involvement ensures the continuity of their own healthcare, which is crucial for the longterm success of the transplant. Healthcare systems must develop structured transition programs to guide patients and their families through this process, minimizing risks and ensuring a seamless shift in care.
Those who make the jump from pediatrics to adult care are setting the standard for our longest-living transplant recipients. Research and innovations in pediatric transplant care frequently lead to advancements benefiting all age groups. For instance, pediatric care practices emphasize holistic approaches, considering not just the immediate medical needs but also the long-term physical, emotional, and social development of the patient. These comprehensive, family-centered care models are now being adopted in adult transplant programs, highlighting the influential role of pediatric care in shaping broader healthcare practices.
Written by Melissa McQueen, Co-Founder, Transplant Families
Donating blood products takes as little as an hour and can make a lifesaving difference for someone receiving an organ transplant.
Advances in medicine have increased access to care for a broader patient population. More options and less invasive treatments mean more patients can be treated. Procedures that were once uncommon or limited have become routine. However, with expanded access comes an increased need for blood products to support diverse patients undergoing procedures like organ and bone marrow transplants.
In the last two decades, the number of people donating blood through the Red Cross has fallen by about 40%. When fewer people donate blood, disruptions to the nation’s supply become more challenging to overcome, and extreme weather events, which are increasing in frequency and intensity, compound these disruptions and threaten the blood supply.
How you can help
Having blood products readily available can mean the difference between a loved one receiving a lifesaving organ transplant or having to wait. In just one hour, blood donors can provide the lifesaving blood needed for delivery of care and treatment. As a physician who sees the need for blood and platelets every day, I invite you to be a part of the care that makes organ transplants possible by becoming a regular blood donor.
Lasky, M.D. Divisional Chief Medical Officer,
George Lopez, whose career spans television, film, and stand-up comedy, established a foundation to help raise awareness for kidney health and organ donation.
George Lopez first learned he had kidney problems during a physical examination for his high school baseball team.
“Of the 25 guys on the team, I had to have my blood pressure checked three times,” Lopez said. “Even at 17, and in good physical condition, my blood pressure was elevated.”
The first signs
Like most teenagers, Lopez tried to ignore the problem and pass off the symptoms as exhaustion. “I ignored the signs and went on with my life,” he said. “The most critical aspect of kidney disease is that it shows up as fatigue, and it’s easy to blame on being tired or not getting enough sleep. Meanwhile, silently, the kidney’s function is decreasing.”
His biggest wake-up call came when he was unable to donate blood because of his kidneys. “I got a letter once telling me that I couldn’t donate anymore, but they didn’t say why,” he said. “Now I know it had to do with the function of my kidneys.”
Now, at 63 years old and with a stellar career encompassing film, television, and stand-up comedy, Lopez has dedicated himself to raising awareness about kidney disease with the George Lopez Foundation, which he founded in 2014.
“The mission of the foundation is to create positive, permanent change for underprivileged children, adults, and military families, confronting challenges in education and health, as well as increasing community awareness about kidney disease and organ donation,” Lopez said.
Awareness of kidney health is critically low, particularly among young people. “About 90% of people with early kidney disease don’t know they have it,” Lopez
said. “More than 100,000 people are waiting for a life-saving transplant and over 3,000 new patients are added to the kidney waiting list each month.”
Through the foundation, Lopez encourages people to register to become living kidney donors to assist the thousands of people in need. “They can sign up when they get their driver’s license or visit donatelife.net, because 90% of Americans are in favor of being a donor, but only 60% are registered,” Lopez said. “Continually raising awareness helps promote the importance of living donors and organ donation.”
The foundation promotes kidney health awareness in other ways, too. “We’ve partnered with Natera Inc., a diagnostics company dedicated to supporting kidney patients through advanced genetic testing,” Lopez said. Another big event for the foundation is its annual George Lopez Celebrity Golf Classic, which helps send children to Kidney Camp, a week-long summer camp.
Lopez said that coming from a Latino family meant he avoided the doctor when he was growing up. “I came from a culture where health was looked at with fear from an early age,” he said. “I joke about not wanting to go to the doctor because ‘they might find something.’”
During his comedy shows, he hopes to encourage his audience to get regular health check-ups. “The people who come to see me do stand-up rarely go to the doctor,” Lopez said. “I tell them, ‘You need to go! You need to get your blood checked. That can tell you so much.’ That’s why I started the foundation — to raise awareness about kidney disease, and the importance of kidney health and organ donation.”
Written by Ross Elliott
Organ and tissue transplants are lifesaving, but they bring significant financial burdens that many families are unprepared for.
Rick Lofgren’s journey with The Children’s Organ Transplant Association (COTA) began 26 years ago and was inspired by a personal connection — a cousin who passed away after an unsuccessful bone marrow transplant. This loss motivated him to help other families facing similar struggles. When he first joined COTA, the organization helped around 30 families annually. Today, that number has grown exponentially to nearly 250 new families each year, with more than 4,500 families helped since COTA was founded in 1986. Despite this growth, Lofgren says he would be happy if COTA were no longer necessary, although the need remains substantial.
One of the most pressing challenges for transplant families is the non-medical costs associated with transplantation. Even with good insurance coverage, families face hefty expenses related to transportation, lodging, and basic living needs — especially if they must travel far for appointments and the transplant itself. High deductibles and co-pays also add to the financial strain. As Lofgren points out, many families meet their annual out-ofpocket maximums early in the year, and these costs reset every January, making long-term financial planning daunting.
The cost of transplant care varies depending on the type of organ. Kidney transplants, which make up about 85% of all transplants, are more accessible due to the higher number of hospitals performing these surgeries. Rarer transplants, such as pancreas or lung transplants, are more costly due to their complexity, as well as the limited number of hospitals performing these surgeries. This often requires families to travel across states.
Long-term care presents another financial hurdle. All transplant recipients
face a lifetime of transplant-related costs; however, pediatric cases far outpace those of adult recipients. For instance, families of children facing a transplant must plan for decades of ongoing expenses, such as medications, lab visits, and hospitalizations for additional health issues that may arise.
Beyond the immediate medical costs, there is a broader impact on transplant families’ lives. Many parents must leave their jobs to care for their children, leading to a sharp reduction in household income. While remote work has helped ease this burden for some, the reality remains that caring for a child in the hospital is a fulltime job.
Looking ahead, Lofgren believes policy changes could help ease the burden on transplant families. Proposals like tax incentives for organ donors, paid time off for transplant-related care, and increased financial support for living donors are among the solutions he envisions. He hopes these measures will become standard — much like the military’s recent policy offering 12 weeks of paid leave to new fathers.
Ultimately, while transplants are vital, the financial and emotional toll on families is immense. The work being done by organizations like COTA is essential in helping transplant families manage these challenges, ensuring they can focus on their child’s health rather than mounting bills.
Written by Mediaplanet Staff
After an emergency liver transplant, Nelson Freytes, CEO of Transplant Media, dedicated his life to educating the public about organ donation.
What are the most common myths about organ donation and transplants?
In my experience, the most common misconception is that hospitals will let anyone pass away to use their organs to save others. The truth is that hospitals are made up of very caring people who pick the path of medicine to help, cure, and heal — never the opposite. If this isn’t enough, people should understand that doctors are rated and monitored. Rest assured that doctors take pride in having a great success rate, and when that rate shows any signs of decline, there are systems in place to ensure it doesn’t take a toll on human life.
What do you believe are the most effective ways to encourage more individuals to become registered organ donors?
I think this can be accomplished by closing the gap that exists between a person and their concept of who a transplant patient is. We all have a sense that these are things that happen to others who are external to ourselves. I believe the key is to help more people become aware that “them” or “that group” is “us.”
How can individuals best support the transplant community?
The best way to support the transplant community is by (1) registering as an organ donor, and (2) understanding that just doing that means everything, and nothing else is required — not even having to actually become a donor, which all of us in the transplant community hope is never the case.
