National Minority Organ/Tissue Transplant Education Program

Researchers at Saint Louis University are working to shed light on kidney disease, an area with stark racially based health disparities and in need of more research. Results of the study led by Krista Lentine, MD, PhD FASN FAST will inform how variants in the apolipoprotein L1 (APOL1) gene – present in some individuals of African ancestry – impact the acceptance of organs from deceased donors, the survival of transplanted organs, and the health of living donors.

Dr. Lentine hopes to overcome disparities in research participation in the African American community and encourages African Americans to participate in research that may improve kidney transplant outcomes.

SLU Researchers Invite Living Kidney Donors and Recipients to Join NIH-funded Study to Overcome Disparities in Kidney Disease, Transplantation

SLU Researchers Invite Living Kidney Donors and Recipients to Join NIH-funded Study to Overcome Disparities in Kidney Disease, Transplantation Saint Louis University School of Medicine researchers led by Krista Lentine, M.D., Ph.D., professor of medicine, will assess how the use of genetic testing may mitigate racial disparities in the health outcomes of people with chronic kidney disease, including organ donors and transplant recipients.

Does your family know about your decision to be an ? Contrary to popular belief, just signing a donor card or checking a box on your driver's license doesn't guarantee that your wishes will be carried out. To be certain that your organs will be donated, it is vital that you tell your family about your decision to give the . Doing so in writing ensures that your wishes will be considered. If your loved ones know of your plans to be a donor, it will be easier for them to give consent when the time comes. Learn more at buff.ly/4a3p3cB.

Kidney transplantation is the absolute best treatment for most patients with chronic kidney disease and end-stage renal disease. Sadly, due to the shortage of donor kidneys, about 5,000 people die every year while waiting for a kidney transplant. You can help! Choose to give the ! Become an and tell your family about your decision today! Learn more at buff.ly/4a3p3cB.

When 98-year-old Orville Allen's family prepared to say goodbye after he succumbed to injuries from a fall, they didn't hesitate when asked about donating their dad's liver. “It turned it from being such a sad loss of our dad to having this little ray of joy because he was doing what he’d done all his life... He was giving one more gift.”

You're never too old to be an organ donor and give the gift of life. Make the decision to become an organ donor today and share your decision with your family.

A 98-year-old man's liver was donated. He is believed to be the oldest American organ donor ever

A 98-year-old man's liver was donated. He is believed to be the oldest American organ donor ever Transplant organizations say a 98-year-old man may be the oldest American to ever donate an organ. Orville Allen lived a lifetime of service as a World War II and Korean war veteran and a longtime educator in rural Missouri.

Chronic kidney disease (CKD) affects an estimated 37 million Americans. Unfortunately, as many as 9 out of 10 adults who have CKD don't know it. Early kidney disease has no symptoms. So, the only way to find out if you have it is to get tested by a healthcare provider with a blood test that can determine how well your kidneys are working or a urine test that checks for protein. Have you been tested? Talk to your healthcare provider about getting a test today!

In an important step towards improved health equity, OPTN has eliminated race from calculations used to estimate the function of kidneys from deceased donors. National Minority Organ/Tissue Transplant Education Program board member Purnell-Idowu represented the National Kidney Foundation on the workgroup that helped push for the policy change. OPTN Board approves exclusion of race, hepatitis C status from estimate of deceased donor kidney function - OPTN

OPTN Board approves exclusion of race, hepatitis C status from estimate of deceased donor kidney function - OPTN The OPTN is operated under contract with the U.S. Dept. of Health and Human Services by the United Network for Organ Sharing (UNOS). This Web site provides data and educational information about organ donation, transplantation and the matching process.

On , decide to give the by becoming an organ and/or tissue donor. Register today at organdonor.gov, donatelifeamerica.org or at your local motor vehicle dept when you obtain or renew your driver’s license.

As a , you can donate a kidney and part of your liver. About 6,500 transplants from living donors take place every year. Living donors can go on to live active, healthy lives and see the positive impact of their donation. Watch this video by .gov to learn more

Giving While Living: The Basics of Living Organ Donation This video explains how someone can donate an organ while alive and how living donation can benefit others. Living organ donation is helping to save the live...

"Being a Black woman in surgery and being able to connect on a deeper level, culturally, is very powerful,” says . “It’s a blessing.” Suah is one of only 13 Black female transplant surgeons in the US and the only Black transplant surgeon at . A kidney and liver transplant surgeon, Suah believes community outreach and greater diversity among healthcare teams is critical to providing the best care for the Black community. https://buff.ly/3S01wTs

Celebrate National Raspberry Day and enjoy the many health benefits of this delicious fruit! Raspberries Are Bursting With Fiber, Vitamin C, and More Healthy Benefits https://buff.ly/3ZWLLhJ

Transplant Games of America will be held July 5-10 in Birmingham. During this joy-filled event, organ, eye, and tissue recipients are joined by living donors, donor families, patients waiting for transplants, and professionals from the donation and transplant world. Caregivers, supporters, and fans attend to add a festive turn to the six-day event that celebrates life and raises awareness of the need for more organs. About | TGA

About | TGA The Transplant Games have an amazingly rich and memorable 33-year history of bringing together a community of individuals who have been touched by the miracle of donation and transplantation.

As a Caribbean woman who received a living kidney from a stranger, Jennen Johnson recognizes the importance of telling her story.

Diagnosed with kidney failure in her early 40s, Jennen put an advertisement in a newspaper for a donor after being told it would take nearly six years on the wait list for a kidney. When she received the call from a woman offering to donate, it meant that Jennen was on track to receive the best treatment for kidney failure – one from a living donor.

Thanks to TGH’s surgical team her transplant was a success, but Jennen knew her experience with living organ transplantation was not one commonly shared amongst patients from African, Caribbean and Black (ACB) communities, something she attributes to mistrust in the health care system.

“When it comes to living organ donation, the Black community shies away from it because they feel if they’re in trouble and a white person is in trouble, (health care professionals) are going to save the white person,” says Jennen, who is a member of UHN’s ACB Organ Health YouTube Channel Advisory Committee, which aims to provide informative and trusted video content and resources for ACB patients, caregivers, clinicians and communities.

Living kidney donation is the fastest access to a kidney transplant for someone in need and may offer a quicker recovery and longer functioning than a deceased donor kidney. It also results in significant improvements in quality of life and productivity of people living with kidney failure.

Jennen now uses her story to advocate for living organ donation in ACB communities across Canada – those who are amongst other racialized groups where access to living donor kidney transplantation is most needed, but the need is not met.

Two-time kidney recipient to compete in Transplant Games of America https://buff.ly/3VJKE4N From swimming to bowling, ping pong, and more, the Transplant Games of America includes more than 20 competitions for organ recipients and living donors. It’s all about showcasing that transplants work, building community, and raising awareness. But for brothers Robin and Eddie Hinton, it’s about bonding with each other. Eddie donated a kidney to Robin in 1999. To learn more about the Transplant Games of America, visit https://buff.ly/45GW1yM.

Organ Supply and Demand Are Out of Balance: Number of patients on the waiting list vs. patients who have received transplants in 2021, by organ. Experts say one important way to address this imbalance is to increase living donors by educating the public about the safety of the procedure and reducing barriers to undergoing living donation. For example, although living donors are often reimbursed for their travel costs, they are not fully reimbursed for other costs, such as time away from work and childcare. https://buff.ly/3VNZzuO

Innovative company “revives” kidneys that might otherwise be rejected by transplant surgeons. 34 Lives is a biotechnology company named for the approximately 34 patients who are removed from the transplant waiting list every day either because they die or they become too sick to receive a transplant. Their mission is to bring that number down to zero. New Tech Revives 'Unusable' Organs–10 Successful Transplants Used Kidneys That Are Normally Discarded

New Tech Revives 'Unusable' Organs–10 Successful Transplants Used Kidneys That Are Normally Discarded More than 120,000 people in the US are waiting for a life-saving organ transplant and most of them are waiting for kidneys.

Michigan’s first beating-heart transplant offers promise for better outcomes https://buff.ly/3RKnSsm New transplant procedure could enhance access and successful outcomes for patients in need of a new heart. Known as a "beating-heart transplant," the process reduces the times a heart is stopped as it’s moved from donor to recipient. Doing so can reduce recovery time, as well as the risk of future complications.

Michigan’s first beating-heart transplant offers promise for better outcomes The new procedure reduces recovery time and risk of future stroke and organ failure.

Living kidney donor created children's book series to raise awareness about organ donation. HOWL the Owl® was created to inspire love and kindness, and also bring awareness to organ donation through his series of organ donation books. Howl’s unique name conveys his message of Help Others With Love. Brenda E. Cortez created Howl the Owl® to spread love and kindness, and inspire others to do the same!

Howl the Owl | BC Books, LLC https://buff.ly/4cvhbCs

Transplant recipient raises awareness about organ donation with new children's book.
Jean Sime is celebrating the recent release of a children’s book, “Howl is Thankful for Kidney Donation,” which she co-authored with Brenda Cortez. Sime said she hopes her book encourages readers to become organ donors and that it gives optimism to families forced to wait it out. She said she also hopes that children’s hospitals will purchase copies of it and provide it as reading material for their patients.

“This is a way for me to give back,” Sime said. “This is my way of being grateful for the gift that I received.”

Wayne woman's life-saving kidney transplant inspired her to 'give back.' Here's how Everything changed, said Jean Sime, when a phlebotomist relayed her story to a nurse who was a willing organ donor.

U.S. organ transplantation system erroneously considers all Black donor kidneys as more likely to stop working after a transplant than kidneys from donors of other races. Bioethics, health and philosophy scholar says this flawed system raises serious ethical concerns about justice, fairness and good stewardship of a scarce resource – kidneys.

Despite high demand, kidneys donated by Black Americans are more likely to be thrown away. Here’s why. | CNN Bioethicist Ana Iltis explains the flawed system that erroneously considers all Black donor kidneys more likely to stop working after a transplant than kidneys from donors of other races, leading many kidneys donated by Black Americans to be thrown away.

On , learn more about being a living organ donor. "It is the greatest gift that one person can give to another," said Dr. Jennifer Verbesey, an expert in kidney/pancreas transplants for adults and children, and director of the Living Donor Kidney Transplant Program at the Transplant Institute. Most living donors go on to live healthy and active lives. They report living donation as a positive emotional experience, and they tend to have a similar or better quality of life than before the donation. Read about how one woman's gift has allowed two best friends to continue their adventures together.
How a Virginia woman became her best friend's kidney donor

‘Miracle': How a Virginia woman became her best friend's kidney donor When Lauren Grom met her best friend, Julie Wood, she didn’t know her friend would save her life one day.

are crucial in kidney transplants and deserve our full support, yet they often encounter obstacles such as insurance discrimination and the challenge of taking time off work for post-surgery recovery. The bill aims to rectify this injustice by prohibiting insurance practices that discriminate against living organ donors and providing the appropriate medical leave for surgery recovery.

Letters: Organ donors are vulnerable; bill would protect them As someone living with polycystic kidney disease, I am deeply aware of the urgent need for additional living organ donors.

American Kidney Fund Commends South Carolina for Passing Protection Legislation https://buff.ly/3X6E76eThe legislation will help save lives by making it easier to become a living organ door. Life, disability and long-term care insurers are prohibited from discriminating against living organ donors by refusing to insure them, limiting their coverage or charging them a different rate or premium based solely on their status as a living organ donor. American Kidney Fund (AKF) fights kidney disease on all fronts with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant.

American Kidney Fund Commends South Carolina for Passing Living Donor Protection Legislation AKF applauds South Carolina for making living organ donor protections state law

South Carolina Adopts Insurance Rules Protecting Living Organ Donors | ThinkAdvisor https://buff.ly/457QctW The Living Donor Protection Act bars life, disability and long-term care insurers from making decisions based solely on an individual's organ donor status. The measure would make it a little easier for those who need organ transplants to find donors and could make life easier for those who want to be donors.

South Carolina Adopts Insurance Rules Protecting Living Organ Donors | ThinkAdvisor Similar bills pending in Congress have strong bipartisan support.

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Autosomal dominant polycystic kidney disease (ADPKD) is the fourth leading cause of end-stage kidney disease (ESKD), which can lead to dialysis or a transplant. Kidney failure occurs even earlier for Black and Hispanic patients with ADPKD. Unfortunately, Black and Hispanic patients are also more likely to be misdiagnosed or diagnosed at later stages because they are disproportionately impacted by conditions that can mask an ADPKD diagnosis such as hypertension and diabetes. If uninsured or living in communities with few medical resources, there is a far greater chance that patients will be in renal failure by the time the disease is diagnosed. Learn more here: Recognizing Racial Disparities Impacting Rare Kidney Disease Patients

Recognizing Racial Disparities Impacting Rare Kidney Disease Patients There's nothing more disheartening than seeing patients for the first time and knowing, had they come to me earlier, there may have been management strategies to help delay progression of their disease. As a Black physician, I am keenly aware of cultural tendencies in my community not to discuss or....

A new study finds comparable health outcomes between living kidney donors and nondonors. The findings reinforce the safety of being a living kidney donor. For more information about becoming a kidney donor, visit buff.ly/4a3p3cB or https://buff.ly/3UScn2s Hypertension and Kidney Function After Living Kidney Donation https://buff.ly/3KmMTW8

Given severe shortages of organs and increasing rates of unused kidneys from potential donors, there is growing interest in ways to expand the pool of potential donor kidneys. One study shows that utilizing kidneys from deceased donors who previously underwent dialysis is a promising option. Kidney Transplant Outcomes From Deceased Donors Who Received Dialysis https://buff.ly/3Klkznd

Semaglutide (Ozempic) shows promise in protecting kidneys and improving survival for diabetes patients with CKD. Unfortunately, Black patients made up just 4.5% of the group studied. So it is unclear how the findings apply to the general population since Black Americans represent 35% of U.S. patients with kidney failure. Diversity in research participants is essential for broader applicability. https://buff.ly/4bXwl2M .

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