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Transplant patient webinar addresses proposed changes to kidney and pancreas distribution

Public comment encouraged

Transplant candidates, recipients and their families have a unique perspective on national organ transplant policy. UNOS, in its role as the national Organ Procurement and Transplantation Committee (OPTN), encourages all who are interested to read and offer public comment on proposed policies.

Two proposals currently out for public comment seek to eliminate geographic boundaries currently used in kidney and pancreas allocation. The proposed policies would replace local donation service area (DSA) and regional boundaries with a 500 nautical mile circle around the donor hospital. After the organ is offered to all eligible candidates listed inside the 500 nautical mile circle, it would then be offered to eligible candidates beyond 500 nautical miles.

The OPTN Kidney and Pancreas Transplantation Committees will host a webinar on Monday, September 16, 2019, from 4 to 5 p.m. EDT to describe the proposals for transplant patients and family members and encourage them to comment on the proposals. You may register for the webinar here

As time permits, presenters will answer questions from participants. The webinar will also be recorded, and a link to the recording will be posted as soon as available.

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Heart recipient honored with 2019 NDM Award for Excellence

Heart recipient honored with 2019 NDM Award for Excellence

United Network for Organ Sharing (UNOS) named James “Jim” Gleason of Beverly, NJ, the winner of its 2019 National Donor Memorial Award for Excellence in recognition of his untiring efforts as a donation advocate.

Jim’s volunteer journey began 25 years ago when he received a heart transplant. From that moment in October of 1994, Jim Gleason has been an unwavering advocate for organ donation and transplantation. Soon after his transplant, Jim began visiting transplant patients, sharing his story with others, and writing newsletters.

Since that time, Jim has given more than 500 talks from coast to coast. He has also provided support to transplant candidates and recipients, represented the voice of patients in organ policy development, shared his experience with transplant professionals and volunteered and raised money for non-profit organizations.

“Jim’s level of commitment to promoting donation and helping other transplant patients is unparalleled” said UNOS President Sue Dunn. “He has been a tireless advocate for more than two decades and continues to play a vital role within the donation and transplantation community.”

UNOS established the National Donor Memorial Award for Excellence in 2010 to recognize exceptional advocates who promote organ donation and transplantation. UNOS solicits nominations for the award from the organ procurement organizations and transplant centers in the United States.

Jim was nominated by Hospital of the University of Pennsylvania. Previous winners have been donor family members, a social worker/donation advocate, a liver recipient, and the recipient family members.

UNOS unites and strengthens the donation and transplant community to save lives.

UNOS is a non-profit, charitable organization that serves as the nation’s Organ Procurement and Transplantation Network (OPTN) under contract with the federal government. The OPTN helps create and define organ allocation and distribution policies that make the best use of donated organs. This process involves continuously evaluating new advances and discoveries so policies can be adapted to best serve patients waiting for transplants. All transplant programs and organ procurement organizations throughout the country are OPTN members and are obligated to follow the policies the OPTN creates for allocating organs.

Headquartered in Richmond, Va., UNOS is also home to the National Donor Memorial, which honors the life-giving impact of organ and tissue donation.

Learn more about the National Donor Memorial

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Solitary Kidney Siblings

Solitary Kidney Siblings

Eight years ago, my brother Josh, who was 19 at the time, donated his kidney to my Dad at Northwestern Memorial Hospital. It was a miracle how well the transplant worked. My sister, Hannah, and I were so inspired by what we saw that we knew one day, we wanted to be living donors for somebody. A couple years after after my Dad’s kidney transplant, we found out that my Dad would need a second transplant. I was approved to be his donor, but he was too sick at the time for a transplant. We spent the next two years trying to get him healthy enough for surgery, but unfortunately he passed away last September. The year leading up to his death was very rough: numerous doctors appointments, hospital stays, many many days of “not feeling well.” Hannah, now 24, and I, 25, didn’t want another family to go through what we had gone through. We had witnessed the miracle of organ donation, so we decided to honor our Dad by donating our kidneys anonymously. So on March 14 & 15, Hannah and I each donated one of our healthy kidneys to a complete stranger at Northwestern. It was a wonderful experience and I wish I could do it again. The pain was less than I expected and the recovery time was surprisingly quick. We both felt like we were at a time in our life where we could take off work, were physically at our healthiest, and neither of us had husbands/children who depended on us. I have been a nurse in the Medical ICU at Northwestern for the last four years and my Dad just so happened to spend some of his final days on my unit. I felt badly that I couldn’t save my Dad, both as a nurse and with my kidney, but that didn’t mean I shouldn’t save someone else. We took the worst thing that happened to us and turned it into something beautiful.

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NRLB update: MMaT calculation now based on DSA of transplant hospital

Effective May 24, 2019, at 10:15 p.m. EDT, the median MELD at transplant (MMaT) scores for liver candidates with exception scores are now based on recent liver transplants performed at liver transplant hospitals within the donation service area (DSA) where the candidates are listed.

When the National Liver Review Board (NLRB) was implemented on May 14, 2019, at the same time as the acuity circles distribution model, the basis of the MMaT calculation was recent transplants at all liver transplant hospitals included in a 250 nautical mile radius of the hospital listing the exception candidate. With the reversion to a donation service area (DSA) and region-based liver allocation system effective May 23, some DSAs had different MMaT scores among liver programs within their area. This in turn could create disparities affecting candidates’ transplant access within the local DSA of the donor.

The OPTN Executive Committee, by teleconference May 24, unanimously approved basing the MMaT calculation on DSA to address unintended consequences of the reversion to DSA-based liver allocation.

The conversion has been made within UNetSM for all liver transplant candidates who had an exception score based on MMaT within a 250 nautical mile radius. Please refer to this table for the MMaT score for each liver transplant program based on DSA. If you wish to compare it to the MMaT based on 250 nautical mile circles, this table lists the previous scores.

Many individual candidates’ MMaT will remain the same under the conversion as it was under the previous calculation. Other candidates will have their exception scores either increase or decrease.

You may apply to UNOS to have a candidate’s waiting time adjusted only if the candidate experiences an increase in their MELD exception score as a result of this action. The waiting time adjustment will include time the candidate had at a lower exception score from the May 14 initiation of NLRB up until this action. To request a waiting time adjustment for a candidate, please submit a Waiting Time Modification form. These forms are located in UNetSM; navigate to the WaitListSM, then on the top menu select “Resources”, then select “Forms/Tools.”
Median PELD at Transplant (MPaT) is unaffected by this action. MPaT is the same for all transplant programs with PELD exception candidates and will remain at 35.

As always, transplant programs may request individual exception scores for candidates by the procedure set forth in OPTN Policy 9.4 (MELD or PELD Score Exceptions).

If you have questions about data or information systems, contact UNOS Customer Service at 800-978-4334. For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

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Liver policy reverted to DSA and regions

OPTN Policy 9 (Allocation of Livers and Liver-Intestines) has reverted to use of the donation service area (DSA) and regional distribution boundaries in effect prior to May 14, 2019. This action complies with a federal court order dated May 17, 2019.

The National Liver Review Board (NLRB) remains in effect. Candidates’ currently assigned exception scores did not change. As always, transplant programs may request individual exception scores for candidates by the procedure set forth in OPTN Policy 9.4 (MELD or PELD Score Exceptions).

Resources
The updated liver allocation policy is available in the Policies section of the OPTN website.
Online help documentation covering UNetSM functionality is also available.

Additional information relating to liver policy developments may be found here and will be further updated as needed.

Questions? If you have questions about data or information systems, contact UNOS Customer Service at 800-978-4334. For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

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Changes to liver policy and exception score process are in place

The new liver allocation policy went into effect today, May 14, along with changes to the process for evaluating and assigning liver exception scores.

The new policy provides a fairer, more equitable system for all liver patients—no matter where they live—as they wait for a life-saving transplant.  It’s expected to reduce waitlist mortality by roughly 100 fewer deaths each year, will allow more children to receive live-saving transplants, and will correct an inequity that emerged over time within the old policy that led to unfair advantages and disadvantages based on where liver transplant recipients live.

The transplant community, including a committee comprising transplant experts, organ recipients, and donor families from around the country and the OPTN Board of Directors—with extensive input from the public—came together to develop and approve the new policy.

Until the dream comes true and we no longer have long waiting lists in the U.S., the transplant community will continue its work to find new ways to reduce the number of patients who die each year waiting.  This new policy will support those efforts, bringing long-awaited relief to seriously ill patients awaiting a life-saving transplant.

Additional details about the policy are available on the UNOS website liver distribution page.

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