Blog: Why We Love The MOMster

 Why We Love The MOMster

Introduction

I recently did a live interview with Shannon Mulroy. 

https://fb.watch/a7dQrvEfoT/

Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you're about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!

Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idillac life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.

After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney' s filters causing permanent damage. Despite everyone's best efforts, including her remarkable family and notable physicians, Julia 's kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.

That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter's situation. A donor was found through Julia's twin brother's baseball team at St Anthony's High School in Huntington, Long Island.

A baseball mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa's husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon' s husband is set to do the same thing in the near future.

Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler.

She, Lisa and Julia are also award winners!

I have been a Kidney Patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.

Blindsided

Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help

After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney's filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally "blindsided" by this diagnosis

Despite everyone's best efforts, including her remarkable family and notable physicians, Julia's kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.

Mom Can't Donate to Her Daughter

Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.

The MOMster Goes to Work

A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia's situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.

A Donor is Miraculously Found

Shannon's efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ's team at St. Anthony's High School led to a donor!

A Kidney Transplant for Julia

On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa's gift.

This so inspired Lisa's husband Guy, that he later make an indirect anonymous kidney donation.

Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease

Insuring Julia's Kidney Future

As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives

"In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime."

Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title

As a responsible parent, how do you ensure your child's kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon' s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

Voucher Program

https://www.kidneyregistry.org/for-centers/voucher-program/;

Family Voucher Donation 

https://www.kidneyregistry.org/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/family-voucher-donation/;

Innovative Kidney Donor 'Voucher' System Is Saving Lives 

https://www.webmd.com/digestive-disorders/news/20210624/innovative-kidney-donor-voucher-system-is-saving-lives.

Shannon's husband will do the same thing in the near future to ensure his little girl's kidney future.

Shannon The Kidney Advocate Gives Back

Many times, once a family member's objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter's gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.

In Shannon's Own Words:

"Some Things I’m involved with:

Volunteer with

https://www.liveonny.org/who-we-are/ 

◦ hold events at various places to register and educate people as to the importance and need for organ donors. 

◦ Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story

◦ Speak at universities for example to spoke to 600 resident med students sharing my story 

Volunteer with 

https://nephcure.org/aboutus/our-mission/

◦ New York State Community Leader for support and patient engagement  

◦ Host events to spread awareness for those affected by rare proteins spilling diseases

◦ Mentor and support patients and caregivers to help navigate this terrible disease 

◦ Host a monthly support group via zoom for dialysis and transplant patients and caregivers 

Patient and caregiver advisory board for

If you scroll down you can see me and Kent and this is where we met

https://www.goldfinchbio.com/kidney-focus/focal-segmental-glomerulosclerosis

◦ Guided by Amanda Grandinetti we assist By providing their doctors,scientists, and researchers real actual patient and caregiver‘s point of you. 

◦ We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians and other stakeholders about kidney disease patients’ real-world experiences with treatment options.

Part of NPACT - NEPTUNE Patient Advisory Council for Therapies

https://www.neptune-study.org/

◦ NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  We provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.

◦ When giving the opportunity I speak to their doctors, researchers, and scientists from a caregivers point of view. This was one of my short talks with 95 of them. 

ShannonsStory.mp4


Patient/caregiver advisory board


CureGN Study


https://curegn-org.webflow.io/about


◦ Provide insight from a caregiver‘s point of you to help with the study. 


◦ My daughter is also a participant in the study. 


Living donor coordinator for Kidney Solutions. This is a new position and I will be developing this program into something spectacular!


Kidney Solutions – A Network of Transplant Experience


◦ Work with the founder Kent Bressler to help support, mentor, and guide potential living donors 


◦ Work to try to Connect Potential donors with recipients


Here are a few things I did.


Tv interview 10/2020


https://www.youtube.com/watch?v=6Ydvww3T4pc


Radio show 9/2020


https://www.youtube.com/watch?v=R_bFfRmGFG8


Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open


https://www.newsday.com/long-island/suffolk/kidney-transplant-st-anthony-s-1.33497104


An article that New York Presbyterian Hospital runs throughout their entire system


https://www.nyp.org/patient-stories/the-one-bean-team"


Conclusion


Shannon Mulroy's Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, "I will always give everything but up. We need to find a cure, we deserve to find a cure...we will NEVER give up." Gotta love a Mom who never gives up working for all of us kidney patients.

Blog: Why We Love The MOMster

 Why We Love The MOMster

Introduction


I recently did a live interview with Shannon Mulroy.

https://fb.watch/a7dQrvEfoT/


Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you're about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!


Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idillac life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.


After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney' s filters causing permanent damage. Despite everyone's best efforts, including her remarkable family and notable physicians, Julia 's kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.


That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter's situation. A donor was found through Julia's twin brother's baseball team at St Anthony's High School in Huntington, Long Island.


A mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa's husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon' s husband is set to do the same thing in the near future.


Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler.


She, Lisa and Julia are also award winners!


I have been a Kidney Patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.


Blindsided


Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help.


After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney's filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally "blindsided" by this diagnosis.


Despite everyone's best efforts, including her remarkable family and notable physicians, Julia's kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.


Mom Can't Donate to Her Daughter


Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.


The MOMster Goes to Work


A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia's situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.


A Donor is Miraculously Found


Shannon's efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ's team at St. Anthony's High School led to a donor!


A Kidney Transplant for Julia


On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa's gift.


This so inspired Lisa's husband Guy, that he later make an indirect anonymous kidney donation.


Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease.


Insuring Julia's Kidney Future


As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives.


"In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime."


Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title


As a responsible parent, how do you ensure your child's kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon' s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

Voucher Program

https://www.kidneyregistry.org/for-centers/voucher-program/;


Family Voucher Donation

https://www.kidneyregistry.org/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/family-voucher-donation/;


Innovative Kidney Donor 'Voucher' System Is Saving Lives

https://www.webmd.com/digestive-disorders/news/20210624/innovative-kidney-donor-voucher-system-is-saving-lives.


Shannon's husband will do the same thing in the near future to ensure his little girl's kidney future.


Shannon The Kidney Advocate Gives Back


Many times, once a family member's objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter's gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.


In Shannon's Own Words:


"Some Things I’m involved with:


Volunteer with


 https://www.liveonny.org/who-we-are/ 


◦ hold events at various places to register and educate people as to the importance and need for organ donors. 


◦ Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story


◦ Speak at universities for example to spoke to 600 resident med students sharing my story 


Volunteer with 


https://nephcure.org/aboutus/our-mission/


◦ New York State Community Leader for support and patient engagement  


◦ Host events to spread awareness for those affected by rare proteins spilling diseases


◦ Mentor and support patients and caregivers to help navigate this terrible disease 


◦ Host a monthly support group via zoom for dialysis and transplant patients and caregivers 


Patient and caregiver advisory board for


If you scroll down you can see me and Kent and this is where we met


https://www.goldfinchbio.com/kidney-focus/focal-segmental-glomerulosclerosis


◦ Guided by Amanda Grandinetti we assist By providing their doctors,scientists, and researchers real actual patient and caregiver‘s point of you. 


◦ We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians and other stakeholders about kidney disease patients’ real-world experiences with treatment options.


Part of NPACT - NEPTUNE Patient Advisory Council for Therapies


https://www.neptune-study.org/


◦ NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  We provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.


◦ When giving the opportunity I speak to their doctors, researchers, and scientists from a caregivers point of view. This was one of my short talks with 95 of them. 


         ShannonsStory.mp4


Patient/caregiver advisory board


CureGN Study


https://curegn-org.webflow.io/about


◦ Provide insight from a caregiver‘s point of you to help with the study. 


◦ My daughter is also a participant in the study. 


Living donor coordinator for Kidney Solutions. This is a new position and I will be developing this program into something spectacular!


Kidney Solutions – A Network of Transplant Experience


◦ Work with the founder Kent Bressler to help support, mentor, and guide potential living donors 


◦ Work to try to Connect Potential donors with recipients


Here are a few things I did.


Tv interview 10/2020


https://www.youtube.com/watch?v=6Ydvww3T4pc


Radio show 9/2020


https://www.youtube.com/watch?v=R_bFfRmGFG8


Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open


https://www.newsday.com/long-island/suffolk/kidney-transplant-st-anthony-s-1.33497104


An article that New York Presbyterian Hospital runs throughout their entire system


https://www.nyp.org/patient-stories/the-one-bean-team"


Conclusion


Shannon Mulroy's Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, "I will always give everything but up. We need to find a cure, we deserve to find a cure...we will NEVER give up." Gotta love a Mom who never gives up working for all of us kidney patients.

Austin Lee Blog Final

 Blog: Austin Lee, An Extraordinary Advocate

Introduction

On Friday, November 26th, I did an interview with Austin Lee on the Urban Health Outreach Media. https://www.facebook.com/UrbanHealthOutreachmedia/videos/269613798553320/

This was a terrific, far-ranging interview with one of the more interesting kidney advocates from the DC, Maryland and Virginia (DMV) areas.

Austin Lee is a two-time kidney transplant recipient, who was born with a rare kidney disease, posterior urethral valve (PUV) and become one of the most active and influential kidney advocates in America.

He received his first kidney transplant at the age of 4 from a live donation made by his Mom in July of 1993, that lasted 14 years until late 2007. He had many challenges with kidney disease as a child.

He then did peritoneal dialysis at home until May of 2010 when by way of a paired exchange, he received a second kidney from a living donor on June 8, 2010.

After that point in time in Austin's own words, "Since I received the gift of life for the second time, I’ve made it my purpose to give back to my community. I’m now a patient care volunteer at Children’s National where I have committed over 500 hours of my time volunteering with pediatric patients. I also serve as a new Patient Family Advisory Council (PFAC) member, and I am committed to improving the overall care and experiences for other patients and families of the hospital. Children’s National honored me with the Volunteer Excellence Award in 2014, and I continue to be a voice for kidney patients in my local community and worldwide. I’ve also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and I was chosen for the Working 4 The Community Award during Black History Month in 2017 too."

Austin has recently been invited to the Kidney Health Initiative Patient and Family Partnership Council.

Currently, he is pursuing a career in Early Childhood and in the process of becoming a Child Life Specialist to help other pediatric kidney patients experiencing battles similar to his.

He is a member of the Transplant Quarter Century Club, for transplant recipients who have lived with their transplanted kidneys 25 years or more.

To conclude in Austin's own words: "I want to continue to mentor young pediatric patients on the importance of taking care of their transplanted kidneys so that they may be able to live out their life dreams and goals."

Kidney Background From Birth to Age 4

Austin was not supposed to be here. While still in the womb, during an ultrasound, they discovered a dark mass in baby Austin's bladder, an accumulation of fluid.

They told Austin's Mother that her baby suffered from Posterior Urethral Valve (PUV), or obstructive membranes that develope in the urethral (the tube that drains urine from the bladder. The valve can obstruct or block the outflow of urine the the urethral, causing the bladder, ureters and kidneys to become progressively dilated, leading to possible damage or eventual death. https://www.chop.edu/conditions-diseases/posterior-urethral-valves-puv.

As Austin's Dad was in the Service and stationed in Germany, the military physician advised Mrs Lee to abort the fetus. She refused.

While still in his Mom, they went in through her bladder and into Baby Austin to remove fluid. After Austin was born, the cut holes in his back to drain the urine from his body. He was immediately placed on peritoneal dialysis after his birth. He became the family project to help keep Austin alive. Multiple challenges and hospitalizations characterized Austin's first four years of existence.

First Kidney Transplant

Austin's Father was in the process of being transferred from the base in Germany to one in Washington, D.C. Austin's Mom had an opportunity to visit with a physician in DC concerning Austin, who immediately recommended a kidney transplant. Mom was a perfect match for Austin. Sacrifices again had to be made by Mrs Lee, who had to lose weight to qualify for her son's transplant.

At the tender age of 4 years old in 1993, Mrs Lee gave Austin the gift of life in the form of a kidney transplant. This was the first time in WDC that an Afro-American Adult had a kidney removed in one hospital, , and move to Children's National Medical Center in Washington DC. Austin also had both of his native kidneys removed at the same time. This was a painful procedure as laparoscopic surgery was not available at this time.

Although a kidney transplant is not a cute for kidney disease, and Austin would still have challenges in his life, the quality of his life was vastly improved.

Rejection

Unfortunately, after 14 years in 2007, Austin's transplanted kidney went into rejection. Austin was in high school at the time and the rejection came as a sudden and unexpected shock.

Back on Peritoneal Dialysis

Initially, Austin had to undergo emergency hemo dialysis, before returning to PD after his rejection. He remained on peritoneal dialysis for a period of 3 years. Again, there were many challenges for young Austin. During this time, Austin elected to educate himself about kidney transplants, hoping and praying for second chance at life.

Second Kidney Transplant

On June 8th of 2010, he got his second chance at a living donor kidney transplant. As a result of a paired exchange kidney swap, he was able to receive a kidney from Stella Christian, that continues to function well to this very day.

Commitment to Kidney Advocacy With Emphasis on Pediatric Kidney Patients

After his second kidney transplant, Austin committed himself to giving back to the community, including the Kidney Community with a definite emphasis on Pediatric Kidney Patients, but also to the DMV General Community as well.

He made a 500 hour commitment to Children's National, volunteering with pediatric kidney patients. He teaches pre-schoolers. He serves on the Patient Family Advisory Council (PFAC), committed to improving the overall care for patients and families of the hospital.

He is currently pursuing a career in Early Childhood to become a Child Life Specialist, helping other pediatric kidney patients to overcome obstacles similar to his experiences.

Kidney Advocacy Experiences

By far and away Austin Lee is one of the most active Kidney Advocates in the United States. Here are just a few examples:

• He recently published his story for UNOS News entitled, Austin Lee: Giving Back and Helping Others https://transplantliving.org/stories/austin-lee-giving-back-and-helping-others/;

• He is a member of the Kidney Advocacy Committee for the National Kidney Foundation and he made a video for the NKF & Donate Life America for National Minority Donor Awareness Month. https://m.facebook.com/story.php?story_fbid=4242943142427474&id=100001354900862;

• He is an Ambassador for the American Association of Kidney Patients, a Member of their Speaker's Bureau and a Peer Mentor to advise other kidney patients.https://aakp.org/center-for-patient-engagement-and-advocacy/speakers-bureau/austin-lee/;

• Acts as an Organ Donation Advocate for the Washington Regional Transplant Community. https://www.beadonor.org/;

• Has participated in the Transplant Games of America. https://www.transplantgamesofamerica.org/;

• He is a Wish Granter for the Make-A-Wish Mid-Atlantic Foundation after having a wish granted as a child himself. https://wish.org/midatlantic;

• He is a Patient Care Transplant Volunteer for Children's National Medical Center in WDC in the Heart/Transplant Unit and is currently assisting with a Christmas Gift Drive. https://childrensnational.org/;

https://www.kindnessforkidneys.org/christmas-drive/. Austin has now done over 500 hours of Service at Children’s National!;

• He has recently done a webinar for CARE DX. https://m.facebook.com/CareDx/posts;

• He is a member of the Transplant Quarter Century Club, an Organization of Organ Transplant Recipients Whose Transplanted Organ Has Survived and Functioned for Twenty-Five Years or More. http://quartercenturyclub.org/;

Community Volunteer

Austin's work in the WDC Community is also notable. He is a volunteer for Senior Dogs, Martha's Table, where 320+ bags of groceries were given away for the needy, and the DC Pantry.

Awards

Children’s National honored Austin with the Volunteer Excellence Award in 2014, as he continues to be a voice for kidney patients in my local community and worldwide. He has also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and was chosen for the Working 4 The Community Award during Black History Month in 2017.

Future Work

In the near future, Austin is doing a documentary concerning Pediatric Kidney Disease and his Transplant Journey as a Pediatric Nephrology Patient of Children's National.

Conclusion

Austin Lee is a terrific kidney advocate and a become for the DMV region. We will continue to follow his advocacy with interest.

Austin Lee Broadcast

 Did you miss the Austin Lee Broadcast? Replay It Here!

https://www.facebook.com/UrbanHealthOutreachmedia/videos/269613798553320/

What are “superbugs” and what do they mean for people living with kidney disease

What are “superbugs” and what do they mean for people living with kidney disease

'I'm Healthy Again': Former Raven Lional Dalton Gets Kidney Transplant & Second Chance At Life

'I'm Healthy Again': Former Raven Lional Dalton Gets Kidney Transplant & Second Chance At Life: Last January, Lional Dalton found out just how strong he was when he found himself at the Hospital.

National Living Donor Assistance Center Blog Final

 The National Living Donor Assistance Center Helps Living Donors With Donation Costs

Introduction:

I recently did an interview with Marie-Claire Walters of the National Living Donor Assistance Center (NLDAC). https://www.facebook.com/UrbanHealthOutreachmedia/videos/243050971179725/

Marie-Claire is the Assistant Coordinator of the National Living Donor Assistance Center. She has been with the NLDAC team since 2017, and is responsible for the NLDAC’s website content, newsletter, and educational materials. She has worked on several pilot programs to expand the reach and scope of this program. She is also fluent in Spanish, and provides dedicated support to Spanish-speaking donors, recipients, and transplant professionals at NLDAC.

The National Living Donor Assistance Center (NLDAC) is a federally funded program that helps eligible living organ donors with their travel, lost wages, and dependent care expenses. This program is not intended to promote or encourage donation. Funds are not provided as a gift or reward for being a donor. Funding is only available to donors who cannot receive reimbursement of these costs from any of the following:

• The recipient of the organ

• Any State compensation program, under any insurance policy, or under any Federal or State health benefits program, or

• An entity that provides health services on a prepaid basis

Their mission is to reduce the financial disincentives to living organ donation. To this end, they operate a nationwide system that provides reimbursement of travel and subsistence expenses, lost wages, and dependent care expenses to people being evaluated for and/or undergoing living organ donation. Priority is given to those who could not otherwise afford to donate.

From their website,  "Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

The National Living Donor Assistance Center exists to provide access to transplantation for those who want to donate, but face financial barriers to doing so.

This program is administered by the Division of Transplantation (DoT), Healthcare Systems Bureau (HSB), Health Resources and Services Administration (HRSA), United States Health and Human Services (HHS) through a cooperative agreement with the University of Kansas (KU) and the American Society of Transplant Surgeons (ASTS)." https://www.livingdonorassistance.org/About-Us/Mission-Background

The Types of Assistance Given By NLDAC

There are three things NLDAC covers for eligible donors:

• Travel expenses

• Lost wages

• Dependent care expenses

They can help with evaluation, surgery, and follow-up trips, but donors need to apply and be approved before the trip they would like help with. Applications must be approved and funded before the donation surgery.

The most NLDAC can provide for a donor’s travel, lost wages, and dependent care expenses is $6,000.

How Many Donors Can NLDAC Help on a Recipient's Behalf?

This depends on the type of transplant that is occurring:

• Kidney recipients: one donor at a time with a maximum of 3 donors evaluated.

• Liver recipients: one donor at a time with a maximum of 5 donors evaluated.

• Lung recipients: two donors at a time with a maximum of 6 donors evaluated.

The Rules for Travel Expenses

Donors who are approved for help with travel expenses receive a controlled value card, which is like a credit card with restrictions, to pay for their transportation (airfare, gas, rental cars, taxis, etc.), hotel, and meals on trips to the transplant center. Donors can also use this card for the travel expenses of a support person who accompanies them. NLDAC can only cover travel within the U.S. and its territories. They are restricted to the maximum amount of $6,000.


How Lost Wages are Reimbursed


NLDAC reimburses lost wages by direct deposit or check. After a confirmed appointment, they deposit the reimbursement in the donor's bank account or mail a check. Donors can request reimbursement of the wages they lose during:

• Evaluation trips, up to 3 days

• Recovery from donation surgery, up to 4 weeks

• Follow-up trips or rehospitalization, up to 2 weeks

To receive reimbursement of lost wages, donors must be working for pay at the time of their donation surgery or other trip, and submit clear documentation of their current wages. NLDAC can help donors with lost wages that are not covered by paid time off or short term disability.


Dependent Care Expenses

Some people who are considering living organ donation have caregiving responsibilities for a child, disabled adult, or elderly person. Donors who are approved for help with dependent care expenses can receive up to $420 per week for child-care expenses and up to $504 per week for adult-care expenses caused by their donation. Donors attest to the dependent care expenses they will incur, and then receive funding for that expense by direct deposit or check. Donors can request reimbursement of these expenses on the same trips described in the lost wages section, above.

What Are The Center's Standards for Eligibility?

About 70 % of household are eligible!
There are two sets of requirements—one for the donor and recipient, and one for the transplant center where the donation occurs.

The donor and recipient must:

• Be U.S. citizens or lawfully present residents of the U.S. or its territories

• Have their primary residence in the U.S.

• Sign the attestation form, indicating they are in compliance with Section 301 of the National Organ Transplant Act (NOTA), as amended (42 U.S.C. 274e) which stipulates in part “[i]t shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.”

• Travel from their primary residence to the transplant center

The transplant center where the donation occurs must:

• Attest to its status of good standing with the Organ Procurement and Transplantation Network (i.e., it does not have a designation of “Member Not in Good Standing”)

• Be registered with NLDAC

Who Can Apply for Assistance?

Individuals considering becoming a living organ donor can apply for help with their travel expenses, lost wages, and dependent care expenses from NLDAC if they cannot be reimbursed for these costs by their recipient, a state program, or an insurance company. There is no direct assistance for transplant recipients through this program, though their information is required for the donor’s application.

Living donors of what type of organ can apply?

Kidney, Liver, Uterus, Intestine and Lung.

What Are the NLDAC's Residency Requirements?

The donor and recipient must both be US citizens or lawfully present residents, and have their primary residence in the US or its territories


How Is Eligibility Determined?

Eligibility is determined based on the transplant recipient’s household income. The recipient’s yearly household income should not be more than 350% of the current HHS Poverty Guidelines. If the recipient’s household income is higher, but they would have trouble paying for their donor’s expenses, they must complete and submit a financial hardship waiver worksheet with their application. NLDAC does not currently limit donor household income, but will prioritize funding for donors whose household income is within these guidelines if there is not enough funding to approve all eligible applications.

How Does The Center Define a Household?

For the purposes of NLDAC eligibility, a household is defined as a person living alone or a group of people living together. They do not have to be related. Under this definition, a person who lives with others but lives independently and shares basic living expenses, like roommates, can be a separate household. People who cannot be considered a separate household are spouses living together, parents living with their natural, adopted, or stepchildren, or children living with their natural, adopted, or stepparents, unless the child is 22 years or older.

Why Is The Recipient's Household Income Considered?

Authorizing legislation mandates that the recipient’s ability to pay must be taken into consideration as part of this program. The National Organ and Transplant Act (NOTA) of 1984 has always provided that the recipient may reimburse the donor for certain expenses associated with donating an organ. The establishment of NLDAC does not change this. NLDAC was established to assist donors, and priority is given to individuals who would otherwise not be able to donate because neither the donor nor recipient can afford the expenses associated with the donor’s travel (e.g., airfare, lodging, meals) and/or lost wages.

Who May Not Be Eligible?

The Organ Donation and Recovery Improvement Act outlines three situations in which NLDAC cannot provide funding, even if the applicant meets the other eligibility requirements. Specifically, we can only provide funds to donors whose expenses cannot be reimbursed by their recipient, an insurance company, or a state program.

• Reimbursement by the recipient: The National Organ Transplant Act allows organ recipients to pay for their living donors’ travel, lodging, and lost wages in connection with the donation. NLDAC must assess the recipient’s ability to help their donor before approving an application.

• Reimbursement by an insurance company: Some insurance policies provide a travel benefit for their clients’ living donors. Recipients should check with their insurance company before submitting a NLDAC application to see what support is available for their donor. NLDAC can work with donors who receive partial reimbursement of their expenses from an insurance company to cover unreimbursed expenses. Donors to recipients who are fully commercially insured by UnitedHealthcare can apply for reimbursement of travel expenses from UnitedHealthcare through NLDAC’s website.

• Reimbursement by a state program: Donors and recipients who live in Iowa may be eligible for reimbursement of travel expenses through the Anatomical Gift Public Awareness and Transplantation Fund. NLDAC cannot accept applications for reimbursement of travel expenses from Iowa residents or donors to Iowa residents due to the existence of this alternative reimbursement system. These donors may apply for reimbursement of lost wages and dependent care expenses from NLDAC.

Are Non-Directed Donors Eligible?

An anonymous, non-directed donor is someone who donates an organ without choosing their recipient or knowing who the recipient is. In reviewing these donors’ applications, NLDAC does not require or consider any information about the recipient.

NLDAC’s eligibility guidelines, which were established by the Health Resources and Services Administration and published in the Federal Register, and The Final Rule authorizing the use of federal funding can be consulted.

How To Apply

The application process is a 3 step process:

• Complete and sign a NLDAC Application Worksheet and Attestation Form, including a W-9 only for donors who request wage or dependent care reimbursement;

• For the Self- Employed or Independent Contractor: Attach a copy of one or more of the following documents to verify household income like a federal income tax return, pay stubs, W2, Social Security Award letter or other. If the recipient’s household income is greater than 350% of the Federal Poverty Guidelines, the recipient must complete and submit a financial hardship waiver worksheet;

• Give these documents to your transplant coordinator, social worker or other transplant professional. Recommending these documents are submitted 6-8 weeks before travel or surgical procedure)

Who Submits the Application to the NLDAC?

A transplant center professional (usually a living donor advocate, social worker, nurse coordinator, or financial coordinator) will file the application on behalf of the prospective living donor. NLDAC cannot accept applications directly from patients.

When Should the Application be Submitted to the NLDAC?

We recommend applying well in advance of any trips you’d like NLDAC’s help with. NLDAC requires 10 business days to process applications where the recipient’s household income is within our guidelines (preference categories 1 and 3), and at least 15 business days to process category 2 and 4 applications, where a financial hardship waiver is requested. If the recipient needs a liver transplant urgently and cannot wait 10-15 business days for surgery, the application can be reviewed and approved or denied in 1-2 business days. NLDAC cannot approve an application after the donor’s surgery has taken place, or reimburse expenses incurred before the application was approved.

Who Reviews the Application, Checks Eligibility and Approves or Denies Funding ?

At least two members of the NLDAC operations team review each application, approving or denying them based on the eligibility criteria and preference category. If a waiver for financial hardship is requested, the Health Resources and Services Administration (HRSA) will make the final determination. HRSA’s decision is not subject to appeal.

Explain Why Both the Living Donor and the Recipient Must Sign the NLDAC Attestation Forms?
It is illegal to buy and sell organs in the United States. NLDAC requires the living donor and transplant candidate (recipient) sign a statement (NLDAC attestation form) affirming they have been informed of what constitutes “valuable consideration” and that they are in full compliance with NOTA. Section 301 of the National Organ Transplant Act of 1984 (“NOTA” or “Act”), entitled “Prohibition of organ purchases,” imposes criminal penalties of up to $50,000 and five years in prison on any person who “knowingly acquire(s), receive(s), or otherwise transfer(s) any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” 42 U.S.C.§ 274e (2000). The attestation forms also authorize the transplant center to provide information about the donor and recipient to NLDAC.

Where Does the Center's Funding Come From?

The Center received a Grant from the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) in the amount of $8,150,000.


If I receive assistance from the NLDAC, and my state allows for a tax deduction for donor expenses, may I still claim a deduction for those expenses

No, this is considered income to you. Expenses covered by NLDAC cannot be claimed as donor out-of-pocket expenses, and cannot be deducted on income tax returns. However, if you have out-of-pocket donation-related expenses not covered by NLDAC, you may report those. Certain states allow state employees additional vacation or sick time if they are living donors.

How is Eligibility Determined if the Living Donor is Participating in a Paired Exchange Program?

Yes, you remain eligible with your swapped for donor. You still apply with your originally intended but incompatible recipient.

What Happens If I Use Funds From the NLDAC and I Am Unable to Donate?

Many factors may prevent an intended and willing donor from proceeding with the donation. Such circumstances include present health status of the intended donor or recipient that would prevent the transplant or donation from proceeding, perceived long-term risks to the intended donor, circumstances such as acts of God (such as major storms or hurricanes) or other unforeseen events outside the intended donor’s control. In such cases, the intended donor and accompanying persons may receive reimbursement for the qualified expenses incurred.

Has the NLDAC ever had to use the deferral process?

The NLDAC has NEVER used the deferral process in its history.  The deferral process refers to a situation in the event that there is not enough funding for NLDAC to approve all eligible applicants, priority will be given to donors whose household income is within 350% of the HHS Poverty Guidelines, and those who demonstrate financial hardship. The NLDAC has always had enough money for all of it's eligible candidates.

Conclusion

The National Living Donor Assistance Center provides financial assistance to NLDAC provides assistance to living kidney donors and other solid organ donors, who wish to donate, but are restricted by associated costs like travel expenses, lost wages and dependent care costs. Considering there are almost 100,000 people who are desperate for a kidney on the transplant list and last year, only around 20,000 people were transplanted, with over 3,000 new patients are added to the kidney waiting list each month and 13 people dying each day while waiting for a life-saving kidney transplant, the NLDAC group may be the lifesavers that many are looking for.


References

National Living Donor Assistance Center Website
https://www.livingdonorassistance.org/;

About Us
https://www.livingdonorassistance.org/About-Us/Mission-Background;
How the NLDAC Helps
https://www.livingdonorassistance.org/How-to-Apply/How-NLDAC-Helps;

Eligibility Guidelines
https://www.livingdonorassistance.org/How-to-Apply/Eligibility-Guidelines;

FAQs
https://www.livingdonorassistance.org/Resources/FAQs#a-1110

Organ Donation and Transplantation Statistics
https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats

2d Corrected Draft. NLDAC

 The National Living Donor Assistance Center Helps Living Donors With Donation Costs

Introduction:

I recently did an interview with Marie-Claire Walters of the National Living Donor Assistance Center (NLDAC). https://www.facebook.com/UrbanHealthOutreachmedia/videos/243050971179725/

Marie-Claire is the Assistant Coordinator of the National Living Donor Assistance Center. She has been with the NLDAC team since 2017, and is responsible for the NLDAC’s website content, newsletter, and educational materials. She has worked on several pilot programs to expand the reach and scope of this program. She is also fluent in Spanish, and provides dedicated support to Spanish-speaking donors, recipients, and transplant professionals at NLDAC.

The National Living Donor Assistance Center (NLDAC) is a federally funded program that helps eligible living organ donors with their travel, lost wages, and dependent care expenses. This program is not intended to promote or encourage donation. Funds are not provided as a gift or reward for being a donor. Funding is only available to donors who cannot receive reimbursement of these costs from any of the following:

• The recipient of the organ

• Any State compensation program, under any insurance policy, or under any Federal or State health benefits program, or

• An entity that provides health services on a prepaid basis

Their mission is to reduce the financial disincentives to living organ donation. To this end, they operate a nationwide system that provides reimbursement of travel and subsistence expenses, lost wages, and dependent care expenses to people being evaluated for and/or undergoing living organ donation. Priority is given to those who could not otherwise afford to donate.

From their website,  "Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

The National Living Donor Assistance Center exists to provide access to transplantation for those who want to donate, but face financial barriers to doing so.

This program is administered by the Division of Transplantation (DoT), Healthcare Systems Bureau (HSB), Health Resources and Services Administration (HRSA), United States Health and Human Services (HHS) through a cooperative agreement with the University of Kansas (KU) and the American Society of Transplant Surgeons (ASTS)." https://www.livingdonorassistance.org/About-Us/Mission-Background

The Types of Assistance Given By NLDAC

There are three things NLDAC covers for eligible donors:

• Travel expenses

• Lost wages

• Dependent care expenses

They can help with evaluation, surgery, and follow-up trips, but donors need to apply and be approved before the trip they would like help with. Applications must be approved and funded before the donation surgery.

The most NLDAC can provide for a donor’s travel, lost wages, and dependent care expenses is $6,000.

How Many Donors Can NLDAC Help on a Recipient's Behalf?

This depends on the type of transplant that is occurring:

• Kidney recipients: one donor at a time with a maximum of 3 donors evaluated.

• Liver recipients: one donor at a time with a maximum of 5 donors evaluated.

• Lung recipients: two donors at a time with a maximum of 6 donors evaluated.

The Rules for Travel Expenses

Donors who are approved for help with travel expenses receive a controlled value card, which is like a credit card with restrictions, to pay for their transportation (airfare, gas, rental cars, taxis, etc.), hotel, and meals on trips to the transplant center. Donors can also use this card for the travel expenses of a support person who accompanies them. NLDAC can only cover travel within the U.S. and its territories. They are restricted to the maximum amount of $6,000.


How Lost Wages are Reimbursed


NLDAC reimburses lost wages by direct deposit or check. After a confirmed appointment, they deposit the reimbursement in the donor's bank account or mail a check. Donors can request reimbursement of the wages they lose during:

• Evaluation trips, up to 3 days

• Recovery from donation surgery, up to 4 weeks

• Follow-up trips or rehospitalization, up to 2 weeks

To receive reimbursement of lost wages, donors must be working for pay at the time of their donation surgery or other trip, and submit clear documentation of their current wages. NLDAC can help donors with lost wages that are not covered by paid time off or short term disability.


Dependent Care Expenses

Some people who are considering living organ donation have caregiving responsibilities for a child, disabled adult, or elderly person. Donors who are approved for help with dependent care expenses can receive up to $420 per week for child-care expenses and up to $504 per week for adult-care expenses caused by their donation. Donors attest to the dependent care expenses they will incur, and then receive funding for that expense by direct deposit or check. Donors can request reimbursement of these expenses on the same trips described in the lost wages section, above.

What Are The Center's Standards for Eligibility?

About 70 % of household are eligible!
There are two sets of requirements—one for the donor and recipient, and one for the transplant center where the donation occurs.

The donor and recipient must:

• Be U.S. citizens or lawfully present residents of the U.S. or its territories

• Have their primary residence in the U.S.

• Sign the attestation form, indicating they are in compliance with Section 301 of the National Organ Transplant Act (NOTA), as amended (42 U.S.C. 274e) which stipulates in part “[i]t shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.”

• Travel from their primary residence to the transplant center

The transplant center where the donation occurs must:

• Attest to its status of good standing with the Organ Procurement and Transplantation Network (i.e., it does not have a designation of “Member Not in Good Standing”)

• Be registered with NLDAC

Who Can Apply for Assistance?

Individuals considering becoming a living organ donor can apply for help with their travel expenses, lost wages, and dependent care expenses from NLDAC if they cannot be reimbursed for these costs by their recipient, a state program, or an insurance company. There is no direct assistance for transplant recipients through this program, though their information is required for the donor’s application.

Living donors of what type of organ can apply?

Kidney, Liver, Uterus, Intestine and Lung.

What Are the NLDAC's Residency Requirements?

The donor and recipient must both be US citizens or lawfully present residents, and have their primary residence in the US or its territories


How Is Eligibility Determined?

Eligibility is determined based on the transplant recipient’s household income. The recipient’s yearly household income should not be more than 350% of the current HHS Poverty Guidelines. If the recipient’s household income is higher, but they would have trouble paying for their donor’s expenses, they must complete and submit a financial hardship waiver worksheet with their application. NLDAC does not currently limit donor household income, but will prioritize funding for donors whose household income is within these guidelines if there is not enough funding to approve all eligible applications.

How Does The Center Define a Household?

For the purposes of NLDAC eligibility, a household is defined as a person living alone or a group of people living together. They do not have to be related. Under this definition, a person who lives with others but lives independently and shares basic living expenses, like roommates, can be a separate household. People who cannot be considered a separate household are spouses living together, parents living with their natural, adopted, or stepchildren, or children living with their natural, adopted, or stepparents, unless the child is 22 years or older.

Why Is The Recipient's Household Income Considered?

Authorizing legislation mandates that the recipient’s ability to pay must be taken into consideration as part of this program. The National Organ and Transplant Act (NOTA) of 1984 has always provided that the recipient may reimburse the donor for certain expenses associated with donating an organ. The establishment of NLDAC does not change this. NLDAC was established to assist donors, and priority is given to individuals who would otherwise not be able to donate because neither the donor nor recipient can afford the expenses associated with the donor’s travel (e.g., airfare, lodging, meals) and/or lost wages.

Who May Not Be Eligible?

The Organ Donation and Recovery Improvement Act outlines three situations in which NLDAC cannot provide funding, even if the applicant meets the other eligibility requirements. Specifically, we can only provide funds to donors whose expenses cannot be reimbursed by their recipient, an insurance company, or a state program.

• Reimbursement by the recipient: The National Organ Transplant Act allows organ recipients to pay for their living donors’ travel, lodging, and lost wages in connection with the donation. NLDAC must assess the recipient’s ability to help their donor before approving an application.

• Reimbursement by an insurance company: Some insurance policies provide a travel benefit for their clients’ living donors. Recipients should check with their insurance company before submitting a NLDAC application to see what support is available for their donor. NLDAC can work with donors who receive partial reimbursement of their expenses from an insurance company to cover unreimbursed expenses. Donors to recipients who are fully commercially insured by UnitedHealthcare can apply for reimbursement of travel expenses from UnitedHealthcare through NLDAC’s website.

• Reimbursement by a state program: Donors and recipients who live in Iowa may be eligible for reimbursement of travel expenses through the Anatomical Gift Public Awareness and Transplantation Fund. NLDAC cannot accept applications for reimbursement of travel expenses from Iowa residents or donors to Iowa residents due to the existence of this alternative reimbursement system. These donors may apply for reimbursement of lost wages and dependent care expenses from NLDAC.

Are Non-Directed Donors Eligible?

An anonymous, non-directed donor is someone who donates an organ without choosing their recipient or knowing who the recipient is. In reviewing these donors’ applications, NLDAC does not require or consider any information about the recipient.

NLDAC’s eligibility guidelines, which were established by the Health Resources and Services Administration and published in the Federal Register, and The Final Rule authorizing the use of federal funding can be consulted.

How To Apply

The application process is a 3 step process:

• Complete and sign a NLDAC Application Worksheet and Attestation Form, including a W-9 only for donors who request wage or dependent care reimbursement;

• For the Self- Employed or Independent Contractor: Attach a copy of one or more of the following documents to verify household income like a federal income tax return, pay stubs, W2, Social Security Award letter or other. If the recipient’s household income is greater than 350% of the Federal Poverty Guidelines, the recipient must complete and submit a financial hardship waiver worksheet;

• Give these documents to your transplant coordinator, social worker or other transplant professional. Recommending these documents are submitted 6-8 weeks before travel or surgical procedure)

Who Submits the Application to the NLDAC?

A transplant center professional (usually a living donor advocate, social worker, nurse coordinator, or financial coordinator) will file the application on behalf of the prospective living donor. NLDAC cannot accept applications directly from patients.

When Should the Application be Submitted to the NLDAC?

We recommend applying well in advance of any trips you’d like NLDAC’s help with. NLDAC requires 10 business days to process applications where the recipient’s household income is within our guidelines (preference categories 1 and 3), and at least 15 business days to process category 2 and 4 applications, where a financial hardship waiver is requested. If the recipient needs a liver transplant urgently and cannot wait 10-15 business days for surgery, the application can be reviewed and approved or denied in 1-2 business days. NLDAC cannot approve an application after the donor’s surgery has taken place, or reimburse expenses incurred before the application was approved.

Who Reviews the Application, Checks Eligibility and Approves or Denies Funding ?

At least two members of the NLDAC operations team review each application, approving or denying them based on the eligibility criteria and preference category. If a waiver for financial hardship is requested, the Health Resources and Services Administration (HRSA) will make the final determination. HRSA’s decision is not subject to appeal.

Explain Why Both the Living Donor and the Recipient Must Sign the NLDAC Attestation Forms?
It is illegal to buy and sell organs in the United States. NLDAC requires the living donor and transplant candidate (recipient) sign a statement (NLDAC attestation form) affirming they have been informed of what constitutes “valuable consideration” and that they are in full compliance with NOTA. Section 301 of the National Organ Transplant Act of 1984 (“NOTA” or “Act”), entitled “Prohibition of organ purchases,” imposes criminal penalties of up to $50,000 and five years in prison on any person who “knowingly acquire(s), receive(s), or otherwise transfer(s) any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” 42 U.S.C.§ 274e (2000). The attestation forms also authorize the transplant center to provide information about the donor and recipient to NLDAC.

Where Does the Center's Funding Come From?

The Center received a Grant from the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) in the amount of $8,150,000.


If I receive assistance from the NLDAC, and my state allows for a tax deduction for donor expenses, may I still claim a deduction for those expenses

No, this is considered income to you. Expenses covered by NLDAC cannot be claimed as donor out-of-pocket expenses, and cannot be deducted on income tax returns. However, if you have out-of-pocket donation-related expenses not covered by NLDAC, you may report those. Certain states allow state employees additional vacation or sick time if they are living donors.

How is Eligibility Determined if the Living Donor is Participating in a Paired Exchange Program?

Yes, you remain eligible with your swapped for donor. You still apply with your originally intended but incompatible recipient.

What Happens If I Use Funds From the NLDAC and I Am Unable to Donate?

Many factors may prevent an intended and willing donor from proceeding with the donation. Such circumstances include present health status of the intended donor or recipient that would prevent the transplant or donation from proceeding, perceived long-term risks to the intended donor, circumstances such as acts of God (such as major storms or hurricanes) or other unforeseen events outside the intended donor’s control. In such cases, the intended donor and accompanying persons may receive reimbursement for the qualified expenses incurred.

Has the NLDAC ever had to use the deferral process?

The NLDAC has NEVER used the deferral process in its history.  The deferral process refers to a situation in the event that there is not enough funding for NLDAC to approve all eligible applicants, priority will be given to donors whose household income is within 350% of the HHS Poverty Guidelines, and those who demonstrate financial hardship. The NLDAC has always had enough money for all of it's eligible candidates.

Conclusion

The National Living Donor Assistance Center provides financial assistance to NLDAC provides assistance to living kidney donors and other solid organ donors, who wish to donate, but are restricted by associated costs like travel expenses, lost wages and dependent care costs. Considering there are almost 100,000 people who are desperate for a kidney on the transplant list and last year, only around 20,000 people were transplanted, with over 3,000 new patients are added to the kidney waiting list each month and 13 people dying each day while waiting for a life-saving kidney transplant, the NLDAC group may be the lifesavers that many are looking for.


References

National Living Donor Assistance Center Website
https://www.livingdonorassistance.org/;

About Us
https://www.livingdonorassistance.org/About-Us/Mission-Background;
How the NLDAC Helps
https://www.livingdonorassistance.org/How-to-Apply/How-NLDAC-Helps;

Eligibility Guidelines
https://www.livingdonorassistance.org/How-to-Apply/Eligibility-Guidelines;

FAQs
https://www.livingdonorassistance.org/Resources/FAQs#a-1110

Organ Donation and Transplantation Statistics
https://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats