Journey of Transplantation

A Mediaplanet Guide to Transplant Health

Journey of Transplantation

George Lopez The actor and comedian is raising awareness for kidney health and organ donation with his foundation Discover critical information from Baylor St. Luke’s Medical Center that will help you navigate the organ transplant process Learn how one woman turned her transplant experience into a support network for other patients

DECEMBER 2020 | FUTUREOFPERSONALHEALTH.COM

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How Organ Procurement Organizations Help Save Lives Organ procurement organizations are the bridge between organ donors and recipients, working with donor families, hospitals, and transplant programs to facilitate a successful donation and transplant matching process.

The care many donors and their families receive are provided by everyday heroes from organ procurement organizations (OPOs). OPOs serve as the vital link between donors and recipients, and they work tirelessly every day to ensure those who are waiting for their life-saving transplant have a second chance at life. OPOs also work hand-in-hand with hospitals to clinically support the organ donor.

These everyday OPO heroes provide compassionate care and grief support to donor families before, during, and after their loved one’s donation, ensuring the family is not alone. OPOs help support donor families as they learn that their loved one has died. Even after their loved ones’ passing, the OPO is there to help support the donor family with grieving counseling services or by just simply being available to listen.

Organ donors are heroes, and OPOs honor them and their families they serve with compassionate care while inspiring their community members to donate life.

Steve Miller, CEO, Association of Organ Procurement Organizations

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How Transplant Professionals Are Saving Lives Every Day David Klassen M.D., Chief Medical Officer, United Network for Organ Sharing

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hen the rapid spread of COVID-19 first shut down the nation in March, the organ donation and transplant community learned quickly how to protect vulnerable patients and their families, as well as the surgical teams performing the transplants. They did this essential work amid personal protective equipment shortages, limited COVID-19 testing, and a myriad of other obstacles — all the while continuing to save as many lives as possible.

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Life-saving collaboration Transplant professionals across the United States save more than 100 lives every day. Strong teamwork and innovation across the organ donation and transplant community make this success possible.

The decision to use a deceased patient’s organs to save lives must happen quickly. Across the nation, busy hospital staff have the responsibility of identifying potential donors and calling a local organ procurement organization (OPO) to let them know. Some OPOs, such as the Southwest Transplant Alliance in Texas, have developed technology that automates this process using the electronic health records of the hospitals and health systems they collaborate with. The goal is to speed up the process of finding donors and getting organs to the right patient.

Pooling resources can also save more lives. On the east coast,

New England Donor Services — a partnership between two OPOs, LifeChoice Donor Services in Connecticut and New England Organ Bank in Massachusetts — is improving performance in the region by sharing resources that enable them to be even more effective. From 2016 to 2018, LifeChoice increased donors by 95 percent and transplants by 93 percent.

Stewarding success Over 100,000 Americans are on the organ transplant waiting list, so increasing the number of donations is a top priority. Organ procurement organizations have been able to increase the number of deceased donations significantly, with organ donations up 40 percent compared to eight years ago. As a result, 10,000 fewer patients were waiting their turns last year than in 2014.

We believe the best way to strengthen the world’s best organ donation and transplant system is to listen closely to what people in the field have to say about the improvements that are needed.

Ultimately, we want every transplant patient to have a shorter wait time and better outcomes.

We want more lifesaving donations and transplants each year. I know we can make it happen. n

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Publisher Chloe Addleson Business Development Manager Joelle Hernandez Managing Director Luciana Olson Lead Designer Tiffany Pryor Designer Kayla Mendez Lead Editor Mina Fanous Copy Editor Lauren Hogan Partnerships and Distribution Manager Jordan Hernandez Director of Sales Stephanie King Director of Product Faye Godfrey Cover Photo Courtesy of Justin Stephens 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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What Transplant Patients Need From Their Transplant Program

should be leery of centers not providing that,” Dr. Goss notes. There are also resources online that can help; UNOS sponsors a site called Transplant Living that helps to educate patients.

Dr. Goss also urges patients to research the team’s qualifications, noting that liver transplant hepatologists, for example, should be certified in medicine, gastrointestinal medicine, and transplant hepatology. The surgeons performing the procedures should have completed an American Society of Transplant Surgery (ASTS)-approved fellowship.

Transplant coordinators should ideally have the national certification in transplantation as well.

Every decision is critical with an organ transplant. Here’s what you need to know to get the best possible care.

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earning that you need an organ transplant can be terrifying. “I didn’t think I was going to live long enough to receive a new liver,” says transplant recipient Kandice Blythe. “Just three days before I [received mine], I was throwing up straight blood and put in the ICU for two days.”

Kandice isn’t alone. According to the United Network for Organ Sharing (UNOS), there were nearly 40,000 organ transplants in the United States in 2019 — an all-time high.

Blythe’s doctor, John A. Goss, M.D., is physician director of transplant services and performs transplant surgeries at Baylor St. Luke’s Medical.

Dr. Goss thinks the transplant experience is probably overwhelming for most. “They’re told that they have a disease that’s life-threatening, that they are going to have an enormous operation, take medicines for the rest of their life, that they will have

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to have caregivers,” he notes. That can lead to information overload and can make the transplant process even more difficult for many. But Dr. Goss says there are a few basic things every transplant patient should know — or know to ask.

Go big Perhaps most important is where your transplant program is located.

“It’s important to go to a well-established program,” he says. “You want to get a transplant at a place that can offer all transplants. With that ability comes all the extra services, such as infectious disease, palliative care, nursing care, the anesthesiologist, the pathologist, the blood bank — everything.”

Another key benefit of a large program is the ability to be offered, and accept, donated organs for transplantation. “The bigger centers are more aggressive with taking organs,” Dr.

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Goss says, “so the patients get transplanted faster.”

Choosing a program But not everyone can travel to a large transplant center like Baylor St. Luke’s. “It’s not always feasible for everyone,” Dr. Goss says.

Many factors could limit a patient to the transplant centers in their area, but patients can still make their choice based on some basic facts.

“The transplant center should be able to provide them with their patient care protocols, what to expect, what the criteria is going to be for acceptance, the level of aggressiveness in acquiring an organ, and how they’re going to take care of them afterward,” Dr. Goss says. “That should all be outlined for the patient.”

Patient education is key. Most larger transplant programs offer educational classes where patients are taught what to expect. “A patient

The donation of life Dr. Goss stresses that none of this is possible without the true heroes of the process. “If you don’t have the donation, the whole process can’t happen,” he says simply. “Organ donors are the most important part of it.”

For Blythe, faith was crucial. “Trust in all your doctors and nurses and everyone that will be there to help you,” she says. “Also, make sure you have family, friends, or a group of people that love and care for you and will support you no matter what happens — it makes a world of difference.”

Blythe is recovering well with her new liver. “I haven’t felt this good in a long time,” she says. “Dr. Goss did an excellent job on my surgery and I could not have had a better set of doctors and nurses. I am very thankful for him and the rest of the team that took care of me”. n Jeff Somers

To learn more about a transplant program that’s right for you, visit https://www.stlukeshealth.org/

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The George Lopez Foundation Is Raising Awareness for Kidney Health George Lopez, whose career spans television, film, and stand-up-comedy, established a foundation to help raise awareness for kidney health and organ donation.

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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 59 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.

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PHOTO: JEROD HARRIS

eorge 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.”

Creating positive change “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 amongst young people. “Ninety-six percent of people with early kidney disease don’t know they have it,” Lopez said. “More than 110,000 people are waiting for a life-saving transplant and

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...Ninety-six percent of people with early kidney disease don’t know they have it...

over 3,000 new patients are added to the kidney waiting list each month.”

Through the foundation, Lopez encourages people to

register to become a living kidney donor to assist the thousands of people in need. “They can sign up when they get their driver’s license or visit donatelife.net, because 95 percent of Americans are in favor of being a donor, but only 58 percent 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. “Currently, we are partnering with Natera Inc., a diagnostics company dedicated to supporting kidney patients through advances in 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. The event was postponed this year due to COVID-19, but there are plans to resume next year if restrictions permit.

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.’”

As he plans to resume his stand-up tour next year, he hopes to encourage his audiences to get regular health check-ups. “Latinos only go to the doctor when we are bleeding,” he said. “We forget about things internal.

Fatigue is just fatigue.”

“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.” n Ross Elliott MEDIAPLANET

Top 8 Myths About Living-Donor Kidney Donation

“America’s Got Talent” Star Angelica Hale on Her LifeSaving Kidney Transplant

1. L iving kidney donors are more likely to live PHOTO: MARY BUCK

shorter lives after donating.

Truth: There is no evidence that donation shortens a person’s lifespan.

2. A dults over 50 can’t donate.

Truth: Donors can donate primarily on a basis of health, not age.

3. A kidney donor can no longer participate in sports or exercise.

Truth: A donor should be able to return to exercise about 4-6 weeks after surgery.

4. A kidney donor will have to take medications for the rest of their lives.

Truth: This is necessary only in the immediate postoperative period.

5. A kidney donor will be in the hospital for an extended period of time after surgery.

Truth: A kidney donor will be hospitalized, on average, for two nights.

6. A donor will have to follow a new diet plan following donation.

Truth: There are no dietary restrictions.

7. A donor can no longer consume alcohol following donation.

Truth: A kidney donor should be able to consume alcohol in moderation.

8. A female donor should not get pregnant after donation.

Truth: Donating a kidney does not affect a person’s ability to have a healthy pregnancy.

Kevin Longino, CEO, National Kidney Foundation

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Fans know 13-year-old Angelica Hale for her singing performances on season 12 of “America’s Got Talent.” Now, the star is using her voice to share her personal health story.

When Angelica was four years old, she got double pneumonia as the result of an aggressive strep pneumococcal bacterial infection. Then she experienced sepsis — a life-threatening condition caused by her body’s extreme response to an infection — which led to multiple-organ failure. Doctors said 20 percent of her right lung was damaged by the infection, and her kidneys would never recover. She needed a kidney transplant. While waiting for a match, Angelica was on dialysis for a year and a half.

Finding her match “After testing, it was determined that my mom was a

match. At that moment, it was like a ray of light came over me, and I knew that I was going to live,” she says.

Angelica is the first child ambassador for the National Kidney Foundation. She’s committed to spreading the word about kidney disease and teaching others how to take proper care of their kidneys.

The teenager, who is also an advocate for the Sepsis Alliance, encourages kids and adults to drink water instead of sugary drinks, calling water, “your kidneys’ best friend.”

Her father, James Hale, advises parents and family members of those awaiting a transplant to stay positive.

“Do everything you can to not despair and to keep your hopes up because your loved ones need you now more than ever,” he says. “We were fortunate in that my wife, Eva, was a match for Angelica, and she never hesitated to make the sacrifice.”

Never lose hope Angelica knows waiting for a kidney can be extremely difficult. She wants others in a similar situation to focus on the future. “As days pass, you start to wonder when that one hero will come and save you,” she says. “Keep holding out for that hero, keep pushing forward, never lose hope, and find something you enjoy and use that as your light.”

Her latest song, “Looking Up,” which debuted for International Day of the Girl, is meant to inspire and uplift girls and women.“After getting out of the hospital, I knew that I shouldn’t take any day of my life for granted, and so I worked at my craft and began doing charity events for many organizations, like Make-A-Wish, and Children’s Miracle Network Hospitals,” she says. n

Kristen Castillo

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Precision Medicine and Digital Health Innovations for Transplant Patients Transplant patients need to regularly monitor their health and to have frequent blood tests to monitor the health of their transplanted organs. That’s been challenging during the pandemic.

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ormally patients have their blood drawn inperson at a lab or hospital. But many patients worry about doing those tests because they’re immunosuppressed, high-risk, and want to limit their potential exposure to COVID-19.

Now there’s a safer solution for transplant patients to get lab work done during the pandemic: mobile phlebotomy.

“When the COVID-19 pandemic started, CareDx put their heads together and said, ‘transplant patients are terrified to leave their home [for] their routine blood draw monitoring,’” says Dr. Diane Cibrik, the medical director of the kidney pancreas transplant program at the University of Kansas Hospital. “’Why don’t we create a service that comes to their house — a mobile phlebotomy unit?’”

The result is RemoTraC, a remote home-based blooddraw solution using mobile phlebotomy. Trained mobile phlebotomists go to the

patient’s home to draw the blood, and both the phlebotomist and the patient wear masks. The solution by CareDx, Inc., a precision medicine company, administers AlloSure and AlloMap transplant surveillance tests, as well as standard monitoring tests.

Patient comfort “It limits your exposure,” says transplant patient Amanda Merring, who started getting her blood drawn from a mobile phlebotomist during COVID-19. “It limits the risk because the phlebotomist is one person, as opposed to going into a hospital.”

Merring, 32, received a kidney transplant two years ago. She takes medicine twice a day, receives medical infusions every two weeks and gets blood drawn once a month.

The school music teacher lives in Junction City, Kansas — two hours from her transplant doctor, Dr. Cibrik.

Pre-pandemic she was getting her lab work done at a local hospital.

The mobile phlebotomist gives her peace of mind and is very convenient, spending about 30 minutes at Merring’s home and drawing blood at her kitchen table.

“It’s a comfort knowing that you don’t have to go into a lab somewhere, wait in line, or try to make sure that everything’s clean, or run into people, as opposed to just doing this in the comfort of your own home, where you feel safe, comfortable, and secure,” she says, calling the service, “a blessing for any transplant patient.”

Essential tests Lab tests show how the patient’s body is handling the transplant, including risk of rejection. The tests are critical throughout the process, especially during the first year after transplant.

They shouldn’t be skipped or delayed.

“I started employing more and more of RemoTraC and it works really well,” says Dr. Cibrik.

One of her patients, who received a transplant within the past year, lives in Virginia.

She had all of her labs taken at home and then the two discussed the results during a virtual appointment.

The service is convenient, especially for patients who don’t live near the hospital or lab. Many of Dr. Cibrik’s patients live in rural areas in Kansas, Missouri, Arkansas, and Oklahoma and would have to travel long distances to get blood drawn.

“They love not having to go to the lab,” she says. “They like the personalized attention.

They like being able to have that social distancing and not be with a bunch of other patients in the hospital setting or in the laboratory setting.”

There is no additional cost for patients to use the mobile service.

Support Through offerings like RemoTraC, CareDx is committed to better outcomes for transplant patients. They encour-

age patients to work with their doctors to take part in their own health.

The company recently launched AlloCare, a health app available in the App Store, that helps transplant patients manage their health with key biometric tracking, medication reminders, even upcoming lab scheduling. CareDx also hosted its first annual AlloCare Festival, a virtual celebration to honor the organ transplant community and foster deeper connections among the extraordinary individuals and societies who are part of it. n Kristen Castillo

RemoTraC is available to transplant patients who want monitoring lab tests to be drawn from their home.

Patients sign up at www. ca re d x . com /remotra c to see if they qualify, and CareDx will work with their transplant team.

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The Rise of Stress and Burnout in Healthcare Professionals Society is relying on our healthcare professionals to meet the needs in organ donation and the transplantation space, despite the medical challenges presented by COVID-19.

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OVID-19 is disrupting nearly every aspect of daily life and placing unprecedented demands on our society. A rapid increase in stress and burnout is being seen across the country as the pandemic progresses. Has this become our new normal?

Interestingly, the world of organ donation and transplantation has not slowed down. Just over 19,000 deceased donor transplants have been performed in the United States through July 8

31, 2020, which is 550 more transplants than this time last year.

The challenges ahead Due to COVID-19 and the rise of clinical demands, we have seen an increase in stress and burnout in the transplant community.

Healthcare professionals are not only experiencing a rapid increase in the volume and intensity of their work, but they are also having to cope with additional challenges such as changing protocols and encountering unfamiliar

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working environments with little opportunity for orientation and training. Healthcare professionals are also likely to experience moral and ethical conflicts that challenge their beliefs and personal standards of care.

The resulting psychological distress can have profound and long-lasting effects on their mental health, identity, and personal relationships.

Support is needed It is known that healthcare professionals are in particular need of support initiatives

to help mitigate the effects of the COVID-19 pandemic on their current and future well-being. Staff should have access to several resources such as online therapy and group counselling sessions, along with online tools to help manage symptoms such as anxiety and sleeping difficulties.

Healthcare professionals should also be aware of the early signs of stress and burnout and ensure they practice self-compassion and prioritize self-care. Reduction of non-critical work activities

may help to promote mental well-being. Examples may include rescheduling preventive and routine patient follow-up visits and eliminating non-essential administrative tasks.

Our healthcare providers should be able to count on the healthcare systems in which they work to protect their mental health as well as their medical health. We need to support each other during these challenging times. n Gail Stendahl, DNP, APNP, President, NATCO

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How One Woman Turned Her Transplant Experience Into a Support Network for Other Transplant Patients

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hen she was 35, Dr. Karin Hehenberger received a kidney transplant from her father.

Nearly a year later, she received a pancreas transplant from a deceased person.

Despite having a supportive family, she felt “alone” in this journey. She was seeking solutions to practical problems as well as connections to others who had gone through what she was going through. She pledged to make sure that other transplant patients would not have to feel this way in the future.

Upon her recovery, Karin founded Lyfebulb, a chronic disease-focused platform that connects patients and industry to further innovation and knowledge about real patient experiences. The mission is to reduce the burden of chronic disease by the power of the patient.

“The connectivity between one patient and another is critical for both well-being and quality of life,” says Dr. Hehenberger, who has the perspectives of both the patient and the medical professional.

“To me, getting the transplants was not just about surviving, it was about thriving again.”

Currently, Lyfebulb offers communities for 11 different chronic illnesses, including diabetes, cancer, inflammatory bowel disease, multiple sclerosis, transplantation, migraine, depression/anxiety, substance use disorders, and others.

TransplantLyfe In fulfillment of the pledge made by Karin, Lyfebulb is launching TransplantLyfe, a digital platform for transplant patients, their care partners, and donors to engage with like-minded individuals and learn from each other’s experiences.

The TransplantLyfe platform has four components: a forum where patients, care partners, and donors can discuss concerns such as relationships, jobs, and travel as they relate to giving/receiving a transplant; a 1-to-1 matching feature so individuals can speak directly to others like themselves; a resources section with helpful links; and a journal to help patients track their health metrics. The journal can be particularly helpful during a patient’s first year after a transplant, when it’s essential to ensure the body isn’t rejecting the organ.

“This is the only real community for people with a transplant,” says Dr. Hehenberger. “They can learn from one another; they can share their experiences so they can actually teach others.

In doing so, I believe they’re going to feel better and have better medical and mental health outcomes.” n Kristen Castillo

To learn more about TransplantLyfe, visit https://lyfebulb.com/

A Kidney Transplant Is Just the Beginning of a Long Road For patients with chronic kidney disease, a transplant is a miracle that leads to a longer, healthier life. But without proper care, the dark days of dialysis often return. Now, DNA-based blood tests can help put an end to the threat of rejection.

For the 300,000 Americans on dialysis, a kidney transplant is the light at the end of the tunnel. Still, transplant surgery

is not the end but rather the beginning of a complicated process. Although medications can help prevent kidney rejection, these medications are not fool-proof, and in many cases the body will eventually attack the kidney like it would an infection. In fact, 10 years after surgery, about half of kidney transplants are lost.

For this reason, regular and careful monitoring of a

transplant after surgery is critically important to the early detection and treatment of rejection. Early detection and treatment vastly improve the odds of a kidney lasting a long time.

The good news is that over the last few years, scientists and physicians have discovered new blood tests to monitor kidney transplant health.

One test looks for cell-free DNA from the donor in the

recipient’s blood stream.

This can indicate damage to the donated kidney and is an early, reliable sign of rejection. Scientists have also developed gene-expression tests and other blood tests that give a more complete and detailed view of the health of a transplant.

None of the tests substitute for the most important aspect of caring for a kidney transplant — taking the medications.

Patients who skip anti-rejection medications, even occasionally, are at a much higher risk of losing the kidney due to rejection. A kidney transplant is a precious gift that must be cared for and cherished. With the right attitude, appropriate clinical care, and careful follow-up, a kidney transplant can last forever. n Phil Gauthier M.D., MBA, Medical Director of Organ Health, Natera Inc San Carlos MEDIAPLANET

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How One Donation Has the Power to Save a Life Cristina Pels’ infant son needed a blood transfusion and could not find a match. Then hope arrived, courtesy of a stranger half a world away.

Cristina Pels knew something was wrong.

Her son, Liam, had a cough and fever that were getting worse. Strange lumps appeared all over his infant body. Emergency room visits were becoming more frequent, leaving the family with more questions than answers.

Fortunately, Liam was at the right place at the right time. Dr. Kiran Kumar Belani ordered a genetic test for Liam. It confirmed Belani’s suspicion that Liam had a rare immune disorder called chronic granulomatous disease. It soon became clear: Liam needed a bone marrow transplant They luckily found a perfect match for Liam, and pre-transplant preparations began.

Then, at the last second, their donor backed out, leaving Cristina fearing for the worst.

Fortunately, through connections with blood cancer nonprofit DKMS, a match was found: Bud, a man in Chile. Bud quickly agreed to the transplant. Two years later, the Pels recently celebrated Liam’s seventh birthday. They were even able to thank Bud personally during a virtual meeting.

“How do you say thank you to someone who saved your son’s life?” Pels wondered.

Fortunately, Liam was able to find the words: “Thank you for saving my life, Bud. I owe you big time.”

Matt Little, DKMS

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Addressing Inequality in Organ Transplants and Donation People of color are underrepresented in organ donor registries, which means people are dying needlessly.

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e have watched as COVID-19 has spread across the United States, leaving more than 220,000 dead in its wake, and many more with persistent health issues. We have also been reminded of the inequities that permeate healthcare, resulting in unequal outcomes for people of color.

When I was diagnosed with leukemia in 1991, I had no idea that my chances of survival were inextricably tied to my ethnic background. When I sat down with the doctor at a large hospital in New York, I learned I would never find a matching donor for my bone marrow transplant because of my Jewish genetic heritage.

I had no idea that the best chance of finding a donor was with people who shared the same ethnicity and race. Nor did I know that the donor registry was not ethnically and racially diverse, which likened the search to looking for a needle in a haystack.

With a lot of hard work and a high-profile grassroots campaign, I did find my match. Now it is my life’s mission to pay it forward.

A harsh reality While I was able to find a lifesaving donor, and 98 percent of those who are Caucasian and in need of a stem cell or marrow transplant can more easily get one, only 25 percent of African Americans find a match. The vast underrepresentation of this population and others in the national and worldwide registries means many patients die needlessly. In direct response to this issue, we have created a series of initiatives to address healthcare disparities and delve

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into the barriers and solutions to helping all people access better healthcare.

Raising awareness First, to raise awareness within the African American community about the grim chances for people of color looking to find a lifesaving match, Gift of Life has launched a new short film in collaboration with rapper and lyricist Terrell “Trizz” Myles. This film brings a message of hope and a resounding call to action that reminds us how one selfless act can positively change the outcome for a person’s life, their family, and an entire community.

To respond to the broader issues surrounding healthcare disparities, we are working in partnership with the NAACP and its Youth and College Division to host a series of virtual town halls. These town halls will equip and empower student-led communities to advocate for social change. Featuring an esteemed panel of speakers — from the descendants of Henrietta Lacks to Karen Weaver, the former Mayor of Flint, Michigan — the events will delve into the various barriers that permeate our systems of care, including mistrust of the healthcare system, lack of patient education, inadequate opportunities for economic, physical and emotional health, and much more.

This is a simple action you can take today: order a swab kit by visiting www.giftoflife.org/Terrell. By swabbing the inside of your cheek, you can enter the registry and be tested to learn if you are a match for a patient, now or in the future. n Jay Feinberg, Founder and CEO, Gift of Life Marrow Registry

Organ Donation and Transplantation in African American Communities

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he increasing incidence of end-stage renal disease proves the need for more education is vital to reducing racial disparity in organ donation and transplantation.

While 13 percent of the U.S population is African American, nearly 33 percent of those awaiting kidney transplants nationally are African

American, due predominantly to end stage renal disease (ESRD) caused by hypertension and type 2 diabetes mellitus. The incidence of ESRD in African Americans is 3.7 times greater than in Caucasians. This disparity is more pronounced in the southern states where African Americans make up greater than 60 percent of those awaiting kidney transplantation. These

numbers spotlight the epidemic of kidney disease, hypertension, and diabetes as well as the predominant need for dialysis in this ethnic group.

The effectiveness of education and community awareness is evidenced by the modest increase in national rates of organ donation among African Americans, increasing from 11 percent in 1994 to 15 percent in 2019. These numbers do not

reflect the work being done in different regions such as Washington D.C., where 70 percent of donors are African American. However, there is still much work to be done to move the needle towards increasing consent rate for donation on a wider national level.

Much more work is needed to address ESRD disparities in African Americans, as well as the issues associated with

access to transplantation, especially live donor kidney transplants. The overwhelming incidence of hypertension, together with diabetes, obesity, and poor knowledge of treatment choices place many patients at a disadvantage. n Velma Scantlebury, M.D., FACS, Transplant Consultant and Professor of Surgery, Texas Christian University, University of North Texas Health Science Center MEDIAPLANET

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This home-collection kit has not been FDA cleared or approved; rather it has been authorized by FDA under an EUA only for the self-collection and maintenance of nasal swab specimens as an aid in detection of nucleic acid from SARS-CoV-2, and not for any other viruses or pathogens, and only for the duration of the declaration that circumstances exist justifying the authorization of emergency use of in medical devices during the COVID-19 outbreak under Section 564(b)(1) of the Federal Food, Drug and Cosmetic Act, 21 U.S.C. ยง 360bbb-3(b)(1), unless the authorization is terminated or revoked sooner.