Transplants

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TRANSPLANTS JUNE 2019 | FUTUREOFPERSONALHEALTH.COM

Michaela Layton

The transplant recipient that’s dispelling organ donation myths

Learn about the diagnostic test that’s fighting back against infectious diseases in transplant recipients This Nebraska transplant program is giving children new hearts and saving lives

The Next Steps for Making Cellular Therapy Accessible Cellular therapy is revolutionizing medicine, both on a clinical and legislative level.

In terms of history, cellular therapy is a relatively new form of medicine. Cellular therapy was pioneered in the form of blood and marrow transplantation — the first successful transplants were performed in 1968. Since then, huge advancements have been made to the field, making these therapies more effective for treating cancers and other blood diseases.

With the advent of Chimeric Antigen Receptor (CAR) T-cell therapy, a new form of immunotherapy that uses altered T cells to destroy abnormal cancer cells, experts believe we’re moving in the right direction. CAR T-cell therapy is widely considered one of the most promising treatments for patients battling leukemia, lymphoma, and other forms of cancer.

Dr. Navneet Majhail — director of the Cleveland Clinic’s Blood and Marrow Transplant Program and president of the American Society for Transplantation and Cellular Therapy — said these therapies are transformational.

“There is an impressive response rate in selected patients, and we are just scratching the surface,” Majhail said. “It is a harbinger of where this field is going.”

This year, the Centers for Medicaid and Medicare issued proposed policy changes regarding inpatient and outpatient payment schedules for CAR T therapies. Advocacy groups are on Capitol Hill during these important decision-making moments.

Kate Jacobson, American Society for Transplantation and Cellular Therapy

Why Fixing the Way We Match Organs Will Save Lives Organ transplants save lives, but the system to select which patients receive them is outdated. This organization is modernizing the process to make it more fair for all.

Have you ever wondered how patients in need of a transplant are selected to receive one?

The process is a little more complicated than just standing in line. A national computerized network uses a set of medical and logistical factors to match donated organs with transplant candidates in ways that save as many lives as possible.

Unfortunately, there simply are not enough donated organs to altogether do away with transplant waiting lists, which is why transplant matching must be as fair as possible and influenced only by the most objective factors. Personal or social characteristics, such as celebrity status and income, play no role in determining transplant priority for patients on the waiting list.

Factors that do affect transplant priority include blood type, medical urgency, survival benefit, donor/ recipient compatibility, pediatric status, and distance from the donor hospi-

Brian Shepard CEO, United Network for Organ Sharing

These new policies treat equally sick patients the same, regardless of where they live or wish to seek a transplant. tal — to ensure the amount of time organs must be preserved between recovery and transplant is minimized. Non-uniform boundaries established between donor and transplant hospitals were less of a factor when the current distribution policy was developed in the 1980s because there were fewer patients in need.

Over time, however, different patterns in organ donations and the concentration of transplant hospitals changed patients’ chances of receiving a transplant based on the region of the country in which they lived.

Making the system fair The United Network for Organ Sharing serves as the nation’s transplant system under a contract with the federal government. In this role, we are currently replacing these outdated transplant maps with a simple measure of distance from the donor hospital to transplant hospitals using a series of circles around the donor hospital. These new policies treat equally sick patients the same, regardless of where they live or wish to seek a transplant.

These changes mean the system will place more emphasis on finding the patient with the greatest need and will lead to fewer people dying on the waiting list.

Every successful match restores one more patient to their family, their community, and their workplace. The generosity of each donor touches lives across our country. n

Publisher Mikayla Varunok Business Developer Victoria Borkowski, Shannon Ruggiero Managing Director Luciana Olson Designers Tiffany Pryor, Kemal S Yilmaz Copy Editor Dustin Brennan Director of Sales Shannon Ruggiero Director of Business Development Jourdan Snyder Director of Product Faye Godfrey Lead Editor Mina Fanous Production Manager Josh Rosman Content Strategist Vanessa Rodriguez Cover Photo Courtesy of UW Health All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today.

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PLEASE RECYCLE

Thought You Couldn’t Be an Organ Donor?

Think Again

The Science Behind Identifying Infectious Diseases

Advancements in medicine are expanding the donor pool and increasing the number of people who receive life-saving transplants.

Sudeb Dalai, M.D., Ph.D. Medical Director, Karius, Inc.; Infectious Disease Physician, Sutter Health

There are currently more than 113,000 people on the national organ transplant waiting list, according to the United Network of Organ Sharing.

In 2018, over 36,000 patients received the life-saving gift of a transplant.

While this number set a new record for the number of transplants performed in a single year, there are still many patients waiting for their transplant opportunity. In fact, 20 people die each day while waiting for an organ transplant.

The transplant community has made significant strides in identifying ways to expand the donor pool. One of these ways is to include organs from hepatitis C virus-infected donors in patients who do not have hepatitis C virus (HCV) infection.

Medical advancements, including new antiviral medications that cure HCV with a 98 percent success rate, have made this addition to the donor pool possible, expanding the potential to receive organs from donors who were once deemed invalid.

NATCO, The Organization for Transplant Professionals, encourages you to register to be an organ donor, and to not count yourself out because you carry a disease or condition that would have once barred you from donating. With constant advances in the field of medicine and transplantation, the number of people waiting for transplants can be reduced.

For more information on how to become a registered donor and give the gift of life, visit organdonor.gov/ register.html. n

What is the future of infectious disease diagnostics in the context of transplants?

Erika Demars, RN, BSN, CCTC; Jennifer Reese, BSN, MSN, ANP-BC, APRN-CNP, CCTC

There is a considerable need to develop new strategies to rapidly diagnose complex and life-threatening infections in transplant patients. Transplant ID diagnostics will need increased speed, sensitivity, accuracy, and comprehensiveness, targeting the range of bacteria, fungi, and viruses affecting this susceptible population. Integration between molecular biology, bioinformatics, and engineering is already helping bridge the diagnostic gap.

What’s one thing you wish more people knew about this process?

Developing a new diagnostic test is challenging, costly, time-consuming, and held to exceedingly high standards. Designing and conducting proper clinical studies that demonstrate accuracy, utility, and outcomes take considerable planning and resources.

As physicians playing an integral role in these studies, we approach them with the same rigor and professionalism that we have for each patient we see in practice.

What’s one popular myth about this field you’d like to dispel?

One common myth is that current and emerging strategies for diagnosing infections in transplant recipients will be sufficient. While our field is making tremendous advances, these will likely be mitigated by the emergence of novel pathogens, multidrug-resistant organisms and hypervirulent strains.

Continual vigilance and innovation will be needed to effectively diagnose and manage infections in the constantly evolving microbial landscape. n MEDIAPLANET • 3

Through Legislation, Organ Transplantation Can Go From Treatment to Cure Organ transplants save lives, but life after a transplant can be challenging for recipients.

Stories about organ donation and life-saving transplants have become commonplace in the news, in television shows, and throughout social media, and for good reason — organ transplants save lives and give those with end organ disease a fighting chance.

Organ transplantation is a medical miracle, but receiving a transplant is just the beginning of a recipient’s journey.

After receiving a transplant, recipients must take immunosuppressive medications indefinitely to prevent their body from rejecting their transplanted organ.

They must take these medications daily for the rest of their lives to avoid losing the organ.

There are more than 113,000 people currently on the U.S. organ transplant waiting list. The need for one person to receive multiple organ transplants due to organ rejection only adds to the growing waiting list. To prevent the loss of this precious resource, we must prevent organ rejection.

Getting insurance to cover the necessary (and expensive) medications after a transplant is a significant hurdle for many recipients. Some kidney recipients on Medicare Part B can lose coverage for their anti-rejection medication just 36 months after their transplant.

Recipients are frequently unable to afford their medications once their Medicare drug coverage lapses and, unfortunately, they are often forced to begin reducing their medications or forego them altogether. This leads to unnecessary failure of the transplanted kidney, which can lead to another transplant, dialysis, or death.

The American Society of Transplantation is working with Congress to extend coverage of immunosuppressive medications beyond the current 36-month limitation set for Medicare Part B patients.

Dianne McKay, M.D., President, American Society of Transplantation

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A Transplant Recipient Strives to Dispel Organ Donation Myths

A

s a high school senior, Michaela Layton had al– ways been healthy and had perfect attendance. So when the Spring Green, WI, teen began having flulike symptoms and had to stay home from school, she didn’t think much of it.

“I had blamed my mom for making bad tacos because I never got sick,” said Michaela, now age 24.

The illness plaguing the then-17-year-old ended up being much more serious.

At UW Health in Madison, doctors diagnosed her with a rare, progressive genetic condition called Wilson’s disease, which is caused by a buildup of copper in the liver, according to the National Organization for Rare Disorders (NORD). In Michaela’s case, the copper built up in her liver was causing organ failure.

Thanks to an organ donation, Michaela is alive, having recently graduated from college and hoping to work at the institution

that helped save her life.

Still, since her miraculous recovery, Michaela and her mom, Wendy Layton, continue to speak out to raise awareness of the importance of organ donation.

Numbered days Wilson’s disease is very rare.

Untreated, the condition is fatal, according to NORD. So as soon as Michaela was diagnosed, doctors put her on the transplant list. “I had days to live without it,” Michaela recalled doctors telling her.

Transplants aren’t always a perfect match, nor are they abundant. According to the Health Resources and Services Administration, over 113,000 people, and children are on the national transplant waiting list. Each day, 20 people die waiting for a transplant.

As Michaela waited for a match, her health declined to the point that two days before her transplant surgery, she could barely speak.

Yet the effects of the

transplant she ended up receiving, Wendy said, were instantaneous.

“Two hours after [the surgery], she was sitting up in a chair, and within six hours, she was walking around,” said Wendy, who described

It dawned on us that this was a gift that somebody gave to us — that somebody had to go through a loss for us to be in this happy mode. the situation as “surreal” and “overwhelming.” “It dawned on us that this was a gift that somebody gave to us — that somebody had to go through a loss for us to be in this happy mode.”

PHOTO: COURTESY OF UW HEALTH

Giving back Michaela and her family are in touch with the mother of Michaela’s donor, who died from injuries sustained in a car accident. Michaela said that the night he died, her donor, named CL, had told his mom that he didn’t really want to go out with his friends, and that he wanted to live a better life for his three kids.

Little did he know, CL was already a good person, Michaela said. “He lived a

hard life, and then he gave life to me,” she explained, adding that CL also donated a kidney to his stepfather.

Wendy added: “Her life is going to be donated to CL, in showing that she can do as good as he did for the world. Because of him, she can do that.”

In her speaking work, Michaela is hoping to raise awareness of the importance of becoming an organ donor and to help dispel myths about the act. One misconcep-

tion she hears often is that being an organ donor dissuades emergency medical responders from saving you if your life is in danger because of the dire need for more organ donors.

“They do absolutely anything they can to save your life. Once brain death has been declared, they can consider donation,” Michaela said. “That myth is for sure not true.”

That being a transplant recipient means you’ll be completely healthy afterward is another misconception, Wendy noted, explaining that Michaela must get monthly blood work done and take medications to manage her health.

But Michaela isn’t letting her experience with Wilson’s disease, or her new life as a transplant recipient, stand in the way of her dreams of changing the conversation around organ donation.

“If every time I speak I can have one person really change their mind about being an organ donor — if I can convince them it’s the right thing to do — I’ve done my job,” she said. n Melinda Carter

Why Limiting AntiRejection Coverage Costs Transplant Patients More Than Money For the 726,000 Americans with irreversible kidney failure, getting a kidney transplant offers the best chance at living a long, healthy life.

Once a patient is finally fortunate enough to receive a kidney, they are required to take daily immunosuppressive (anti-rejection) drugs for the life of the transplant, or they will lose the same kidney they likely waited and hoped for over many years.

The costs for these immunosuppressive drugs can be too high for patients who don’t have access to adequate health insurance. The solution to this problem seems simple: give kidney transplant patients lifetime insurance coverage.

Patients with irreversible kidney disease are eligible for Medicare regardless of age, but Medicare beneficiaries who are non-aged or non-disabled lose that coverage 36 months after a transplant.

The costs for immunosuppressive drugs can be so prohibitive that patients skip doses and risk organ rejection, resulting in Medicare having to pay for a new round of dialysis.

Given this is a known problem, many dialysis patients don’t seek a transplant at all, because they know they will not be able to buy the medications.

A recent report shows that extending Medicare coverage of immunosuppressive drugs for patients beyond the current limit not only saves lives, but also money — an accumulated savings of approximately $73 million over 10 years.

Today, Medicare pays for dialysis indefinitely. It also pays for a kidney per transplant (more than $131,000) and for the drugs necessary to reduce the likelihood of organ rejection. Yet, after just a few years, that drug coverage disappears. Many patients, donors, advocates, and others in the kidney community agree that’s too high of a price to pay — in lives.

Kevin Longino, CEO, National Kidney Foundation

MEDIAPLANET • 5

3 Reasons Why Fundraising Is Essential for Children’s Organ Transplants Here are three reasons why a family chooses to do fundraising for a transplant:

1

Wait times for organs With more than 113,000 people currently on the national organ waiting list, many transplant centers require a family to prove their financial ability to pay for the associated costs.

2

Medical & non-medical costs While transplant procedure costs can range from $250,000 to $800,000, there are significant expenses families will face including medications, multiple

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doctor visits, regular lab work and medical tests, transportation, lodging, loss of income, child care for siblings, and more.

3

Lifetime of medical care Depending on their age at the time of transplant, some children will require additional organ transplants as they grow and age.

Anti-rejection medications may be required for a transplant recipient’s lifetime at a cost of several thousand dollars a month.

“We were struggling with doctors’ appointments and tests and medications and so many bills. [Fundraising] has made our

entire transplant journey less stressful by taking away the fear of how we were ever going to pay for the bills and has allowed us to start thinking about our family’s post-transplant future,” said Cindia Maldonado of Dumas, Texas.

Her son, Damian, received a liver transplant hundreds of miles away from their home.

Many insurance providers require a family to pay an annual deductible that can exceed $10,000 and require a copayment for each visit to the doctor or clinic, or for individual medical tests. No plan pays all transplant-related expenses; many

insurance plans only cover 80 percent of the “normal and customary” expenses.

Fundraising for transplant-related expenses eliminates a significant stress for families and allows them to focus on their child’s medical and emotional needs. The Children’s Organ Transplant Association’s priority is to assure that no child or young adult is denied a transplant, or excluded from a transplant waiting list, due to lack of funds. n Rick Lofgren, President and CEO, Children’s Organ Transplant Association

How a Nebraska Transplant Program Is Saving Pediatric Heart Patients’ Lives Every year, more than 680 children worldwide receive pediatric heart transplants, the standard of care for kids with end-stage heart failure. Transplantation, particularly in children, is a challenging journey for a family, but one Nebraska hospital is equipped to provide the very highest quality of pediatric cardiac care, delivering excellent outcomes and the best possible experience to families from around the Midwest and across the country.

SPONSORED

C

hildren’s Hospital & Medical Center in Omaha has been ranked

by U.S. News & World Report as one of the nation’s best children’s hospitals for cardiology and cardiothoracic surgery since 2011. Its Criss Heart Center offers expertise in pediatric heart transplantation, adult congenital heart disease, and the full spectrum of congenital heart conditions.

Waitlist times for Children’s heart failure and transplant program are significantly shorter than the national average. Plus, the hospital has achieved Aetna Institute of Excellence certification for pediatric congenital heart surgery, which is given to hospitals with premier programs meeting enhanced quality review criteria.

Children’s multi-disciplinary pediatric cardiology transplant

team includes Jean Ballweg, M.D., medical director for cardiac transplant, and a team of two other pediatric heart transplant physicians, as well as transplant coordinators, a nurse practitioner, social workers, and a psychologist. These experts collaborate together with extensive knowledge in several different fields to optimize patient diagnosis and treatment, as well as improve outcomes.

“By having our program geographically positioned in the heart of the country, we’re able to serve families from Wyoming, North and South Dakota, Iowa, and all of Nebraska,” says Dr. Ballweg. Children’s central location also means patients from the Midwest don’t have to travel far for ongoing, quality pediatric cardiology care. The program offers a wide network of cardiology outreach clinics in Nebraska, Iowa, and South Dakota locations to provide patients and families with even easier access.

For families receiving care in Omaha who live more than 60 miles away, the hospital offers

the Carolyn Scott Rainbow House, a hospitality house where families can stay while a child is receiving treatment.

“Our patient-centered care, family-centered model has really been a success,” says Dr. Ballweg.

“Our investment in the family and our partnership with them sets us apart. They are part of the process from day one.”

A new heart for Jeremiah One night, toddler Jeremiah Hobson wouldn’t stop crying and had trouble sleeping. His mother, Jalei Hobson, took him to Children’s in Omaha where doctors diagnosed him with an enlarged heart. Later, they put him in a medically induced coma for over a month. He got a heart pump and was put on the list for a heart transplant. “Ultimately, if he didn’t get a heart transplant, he would have died,” Hobson says.

Five weeks later, she got the call — a heart was available.

The next day, Jeremiah got the transplant, a six-hour surgery.

His mother was worried, but she trusted Children’s heart transplant team.

“It was stressful. It was honestly really scary because everything is out of your control,” she says. “As a parent, you try to protect your child and there was nothing I could do to help him.”

Thankfully, the transplant was a success; that was 15 months ago. Now, Jeremiah, who will turn 3 years old this summer, loves the color blue, is learning his ABCs, and enjoys watching “Paw Patrol” on TV. He spends his days playing with his twin brother, Liam, and his two other brothers. Even though he goes to see his cardiology team at Children’s regularly for checkups and will take medicine for the rest of his life, he’s a regular kid.

“Jeremiah is just full of life, he’s full of energy,” says Hobson.

“He doesn’t even know what he’s gone through.”

Dr. Ballweg says Jeremiah’s story is one of many that make her unique work so rewarding.

“It’s an honor to share our expertise and walk alongside families through the joys and challenges of the transplant journey.” n Kristen Castillo MEDIAPLANET • 7

Remarkable Transplant Care.

For Sydney and 15,000 others.

At age 15, Sydney was the world CrossFit champion. One year later she was desperately in need of a liver transplant. When other programs turned her away, she came to UW Health where her brother Tommy and our expert living liver donor transplant team saved her life.

Remarkable Liver Transplant Services in Madison, Wisconsin: • Certified living liver donor transplant center for adults and children

• Transplant Center of Excellence for most insurance networks

• Median wait time of 9.4 months, shorter than regional and national averages

• Veteran’s Administration approved liver, heart and lung transplant center

• Double list with our center to increase chance of receiving an organ offer

TR-352916-19

608-888-2729 UWHealthLiverTransplant.org