Category: Transplantation

National Living Donor Assistance Center

Many dialysis patients feel discouraged to ask a family member, caregiver or a friend to become their kidney donor as they fear creating a financial burden for them. Luckly, there are new bills and program expansions to help living donors with expenses and other financial challenges. One of these programs is the National Living Donor Assistance Center (NLDAC), which can help with living donor travel expenses, lost wages and dependent care expenses! Although the transplant center usually takes care of the living donor application, dialysis facility staff can help educate dialysis patients about this program for consideration of living donation.
To learn more about NLDAC, consider watching these recorded webinars:

April is National Donate Life Month

Celebrated in April each year, National Donate Life Month (NDLM) features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation.
Here are some important facts about donation from the 2021 Donation and Transplantation Statistics from the Donate Life America Donor Designation Report and the Organ Procurement and Transplantation Network (OPTN):
  • More than 39,000 transplants brought renewed life to patients, families, and communities.
  • 7,000 people die each year because the organs they need are not donated in time.
  • 85% of patients on the waiting list are waiting for a kidney. The average waiting time is 3 to 5 years.
  • More than 165 million people are registered organ, eye and tissue donors.

95% of Americans support donation, but only 60% are registered — help bridge the gap! By registering to be an organ, eye and tissue donor in the National Donate Life Registry, you are helping to save lives and give hope to the more than 100,000 people in the United States currently waiting for lifesaving organ transplants. Any adult age 18 or older can register – regardless of age or medical history.

AAKP Recognizes IPRO ESRD Network of the South Atlantic for Service to the Kidney Patient Community

The IPRO End Stage Renal Disease (ESRD) Network of the South Atlantic has been selected as the 2020 recipient of the American Association of Kidney Patients (AAKP) Dominick Gentile, MD, Memorial Award – an AAKP National Legacy Award.

Recognizing extraordinary services and programs that significantly benefit the kidney patient community, the award is being given to the IPRO ESRD Network of the South Atlantic for its work on the “Enhanced Patient Engagement to Improve Patient-Centered Outcomes Among Chronic Kidney Disease Project;” an AAKP-led Patient-Centered Outcomes Research Institute (PCORI) Dissemination grant; its longstanding leadership in promoting the important work of the Southeastern Kidney Transplant Coalition; and its ongoing commitment to serving the kidney patient community of Georgia, North Carolina and South Carolina.

“It is an honor for our Network staff to be selected for this prestigious award by a national, patient-led, patient-focused organization that represents the interests and needs of the renal population we are committed to serve,” says Susan Caponi, CEO of IPRO’s ESRD Network Program. “This award spotlights the excellent work of our ESRD Network program staff and the value that the ESRD Network Program brings to kidney patients across the country.”

Shannon Wright, Executive Director, ESRD Network of the South Atlantic adds, “We are thrilled to be recognized with such a highly-regarded award. We value the opportunity to collaborate with our colleagues at AAKP and members of the Southeastern Kidney Transplant Coalition to improve healthcare outcomes and experience of care for the kidney community.”

“AAKP is fortunate to have such a good partnership with IPRO ESRD Network of South Atlantic. They are a valuable resource for the patients and staffed with true professionals. Their team has contributed substantively to the success of the AAKP-lead PCORI project,” said Richard Knight, transplant recipient and President of AAKP.

AAKP patients have been heavily involved in every kidney-related research study, over seventeen funded by PCORI since its inception. Officials from PCORI are regularly involved in AAKP national meetings including the AAKP Annual Policy Summit.

AAKP, the oldest and largest fully independent kidney patient organization in the United States, is dedicated to improving the lives and long-term outcome of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early detection; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation; and the elimination of barriers for patient access to available treatment options. The award was named in honor of Dr. Dominick Gentile (1932-1997), a Board Member of AAKP at a time when the organization was known as the National Association of Patients on Hemodialysis (NAPH), who helped conceptualize the ESRD Networks, its Medical Advisory Board, and the National Forum of ESRD Networks.

The IPRO ESRD Network of the South Atlantic is one of four ESRD Networks managed by IPRO, a non-profit organization that works with government agencies, providers, and consumers to design and implement innovative programs that improve that bring policy ideas to life. In addition to serving as the ESRD Network for the South Atlantic, IPRO manages the ESRD Network of New England, ESRD Network of the Ohio River Valley, and ESRD Network of New York.

Under the direction of the Centers for Medicare & Medicaid Services, the IPRO ESRD Network Program supports the renal community in ensuring safe, effective, patient-centered care for more than 132,000 renal patients in 13 states.

Click here for the official press release.

Advancing American Kidney Health (AAKH): 2020 Progress Report

On August 17, 2020, the U.S. Department of Health and Human Services (HHS) released a progress report and related press release on the Advancing American Kidney Health (AAKH) Initiative that was first announced in July 2019. The report highlights the public awareness activities launched by HHS relating to chronic kidney disease (CKD) and the voluntary kidney payment models for managing persons with late stage CKD and ESRD. With regard to the mandatory ESRD Treatment Choices (ETC) model, the progress report simply notes that the proposed rule was released in July 2019.

Mac Toolkits; Transplant, Transitions, Medications

The National Forum of ESRD Networks has introduced or updated several Medical Advisory Council (MAC) Toolkits. Two new Kits include the Transplant Toolkit and the Medication Conversion Toolkit. The Transitions of Care Toolkit was updated in mid-April. Find them all at http://esrdnetworks.org/resources/toolkits/mac-toolkits-1, along with the existing Home Dialysis Toolkit, Medical Directors Toolkit, QAPI Toolkit, Medication Reconciliation Toolkit, Catheter Reduction Toolkit, Vaccination Toolkit, and Assurance of Diabetes Care Coordination Toolkit.

NKF Spring Clinical Meetings, Boston

The National Kidney Foundation 2019 Spring Clinical Meetings (SCM19) present a unique opportunity for renal health care providers to learn new developments related to all aspects of nephrology. An important objective of SCM19 is to present the latest insights into CKD care through a combination of interesting courses, practical workshops, thought-provoking symposia and insightful debates. SCM19 will be held May 8-12, 2019 in Boston MA. In-person registration is allowed, but many registration fees are discounted if you register online before May 6.

Extra-cost pre-conference course topics on May 8 include dialysis success, vascular access, ultrasound, supportive care, and updates on new developments in transplant, critical care, and glomerular disease. Extra-cost lunch workshop topics will include vascular access, electrolytes, hyponatremia, glomerular disease, reproductive health, hypertension, communication, and board review. For those unable to attend in person, live-streamed conference sessions will be available on burnout, obesity, safety, fluid management, opioids, social media, diabetes, community, lifestyle interventions, palliative care, and KDOQI update.

For more information and registration, see https://www.kidney.org/spring-clinical.

January 2019 Learning and Action Network (LAN) Webinars

The ESRD National Coordinating Council will host four January webinars to introduce 2019 QIA projects, all to be held 3-4 PM EST.  Find more information and register at the links provided:

National QIA Webinars

The ESRD National Coordinating Council will host four January webinars to introduce 2019 QIA projects, all to be held at noon PST. Find more information and register at the links provided:

The Seven Step Journey Towards Kidney Transplant

The Centers for Medicare & Medicaid Services (CMS) has incorporated in the 2018 transplant quality improvement activity (QIA) a series of standardized steps toward transplant. According to the 2012 Clinical Journal of American Society of Nephrology article, “Impact of Navigators on Completion of Steps in the Kidney Transplant Process: A Randomized, Controlled Trial,” these steps were first defined and performed in 23 hemodialysis facilities in Ohio. The steps are: (1) Suitability for Referral to Transplant Center; (2) Interest in Transplant; (3) Referral Call to Transplant Center; (4) First Visit to Transplant Center; (5) Transplant Center Workup; (6) Successful Transplant Candidate; (7) On Waiting List or Evaluating Potential Living Donor.

Research has identified that the guidance offered by a transplant navigator –or mentor- helps patients move further and faster through the seven steps than they would without a navigator. If you are interested in starting a Peer Mentorship Program at your facility, contact the Network.

Living Non-Related Transplant and Paired Kidney Exchange

According to the United Network for the Organ Sharing (UNOS) nationwide, more than 120,000 people are on the waiting list for an organ transplant as of May 2018. Many face a lengthy wait for an available organ. To spare an individual patient a long and uncertain wait, relatives, loved ones, friends, and even individuals who wish to remain anonymous may serve as living donors. About 6,000 transplants each year are made possible by living donors. Two types of non-related kidney donation are:
1.  Non-directed donation. With this type of donation the donor does not name the specific person to get the transplant. The match is arranged based on medical compatibility with a patient in need. Some non-directed donors choose never to meet their recipients. In other cases, the donor and recipient may meet at some time, if they both agree, and if the transplant center policy permits it.
2.  Paired kidney exchanges. This type of donation is becoming very common and an exciting option for kidney recipient and donor pairs who are not compatible with each other. Previously, people with kidney failure who had an incompatible donor were not able to benefit from the transplant being offered to them. However, paired kidney exchange programs are having a significant impact on the expanding options of living kidney transplants. Paired exchanges are now allowing transplants to occur between incompatible donor pairs and in a few unique ways.
There are many types of living kidney donations. The Network encourages dialysis facility staff to educate patients and care givers about transplant options and provide resources to help them make informed decisions.
For more information please visit:

Increasing Living Donation in the ESRD population

According to the Organ Procurement & Transplantation Network (OPTN), as of March 12, 2018, there are 95,357 people in the United States waiting for kidney transplants.   Every year five thousand of those people die awaiting a kidney transplant; the current average wait for a kidney transplant is 3.6 years due to the shortage of organs. Increasing living donation is a solution to the organ shortage. Living donation also has many benefits, which include: improved organ/graft survival, decreased need for antirejection medications, immediate organ function post-surgery, and immediate placement on the wait list for a deceased organ transplant as you await your living donor work up.

Unfortunately one of the most significant barriers to increasing living donation is the discomfort that patients feel discussing the topic of organ donation with friends and family.  The National Kidney Foundation has developed a campaign, “The Big Ask/The Big Give” to assist patients in understanding the benefits of living donation and prepare them for this discussion.  Reviewing these materials with patients in your facility who are considering transplant or on the wait list already may help them prepare for this difficult, yet potentially lifesaving conversation.

Materials are available at the NKF site at https://www.kidney.org/transplantation/livingdonors/how-to-make-the-ask in both English and Spanish.