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[/size]Living kidney donors rely on a promise to protect our future health. We’re scared it will go away
By Martha Gershun
Five years ago, I donated my “spare” kidney at the Mayo Clinic to a woman I read about in the newspaper. Though living with only one kidney has risks, I was not particularly concerned about my own health. The clinic’s medical evaluation was extremely thorough, and I knew their highly conscientious selection committee would not approve me to be a living donor if they were even the slightest bit concerned the procedure would cause me long-term health problems. Furthermore, I was assured at every step of the process that if my remaining kidney should fail or be damaged, I would “go to the top of the transplant waiting list.”
That promise reassured both me and my family that it was safe to move forward with my donation. The day before my surgery, I signed the forms identifying me as a living kidney donor that would go to the United Network for Organ Sharing (UNOS), the national system that distributes deceased donor organs to those in need of a transplant. If my act of altruism put me at future risk, the nurse transplant coordinator assured me, these forms would guarantee my high priority status.
But that guarantee now feels less certain, because UNOS is changing the way deceased donor organs are allocated to those on the transplant waitlist. Under the current UNOS allocation system, put in place in 1996, two groups of people needing a kidney transplant receive absolute priority over otherwise similarly situated candidates: 1) those with very rare blood types, who are extremely hard to match, and 2) prior living donors like me.

In the new “continuous distribution” framework, all attributes will be considered at once, including estimates of medical urgency, projections of post-transplant survival, placement efficiency, and candidate age. While living organ donors will continue to receive extra “points,” no one attribute will decide an organ match. Each candidate’s total score, a calculation based on a weighted average of all attributes, will determine their prioritization for available organs. (Editor’s note: On Wednesday morning, after publication of this article, the Washington Post reported that the U.S. government plans to “overhaul the troubled U.S. organ transplant system, including breaking up the monopoly power of [UNOS,] the nonprofit organization that has run it for the past 37 years.” It’s unclear what this might mean for the new framework.)

The new framework is intended to combat the very real equity issues surrounding the allocation of scarce cadaveric organs available for transplantation. But this change is profoundly unsettling to living kidney donors around the country, prompting us to ask: Will my priority status be preserved?
In 2022, living donors accounted for more than 15% of all transplants in the United States, gifting a portion of their lung, liver, pancreas, or intestines or one of their two kidneys, the most commonly transplanted organ. UNOS is assuring advocates that it is well-aware of the importance that living kidney donors play in the complex system of organ transplantation. A statement issued by UNOS on March 16 affirms: “We wish to assure the community that the OPTN Kidney Transplantation Committee intends for both prior and future living donors to receive the same level of priority for a deceased donor organ in the new framework as they receive in the current allocation system.”

But we cannot be sure until the algorithm for kidney allocation is finalized. Simulated allocation models still need to be run this summer, followed by public comments and a final recommendation to the UNOS Board at its meeting in either December 2023 or June 2024.

Kidney donors’ concern is understandable. On March 9, UNOS’s continuous distribution system went into effect for lungs, the first organ to be migrated to the new framework. Next it will be rolled out for pancreases and kidneys, then livers and intestines, and finally hearts, the only organ that cannot be donated by a living person.
The communication surrounding this first effort did not look great for living donors. (Many people are surprised to learn that you can donate part of your lung. It’s possible, though very rare; only 253 such procedures have ever been done in the U.S., none in the past 10 years.)
In fact, the weights listed for different factors to be considered in the allocation algorithm were initially quite alarming, with prior living donors receiving only 5 points out of 100 (labeled as “5%” on the chart). That’s the same weight as travel efficiency, proximity efficiency, height, blood type, and antigen sensitivity and less than waitlist survival, post-transplant outcomes, biological disadvantages, patient access, pediatric status, and placement efficiency.

Only after an explanatory conversation with UNOS did I understand this is not as dire as it appears. Since no candidate will ever receive all 100 points, the five-point “bump” for being a prior living donor will, in almost all cases, move the candidate very near the top of the list. But this is complicated math, and no effort has been made to explain the implications to laypeople.
Even worse, in a hypothetical example of the continuous allocation distribution for lungs on the UNOS website, the graph shows a prior living donor dead last on a simulated “match run” of seven people in need of a lung transplant. There is a new disclaimer just added to the website that says “the points shown in the below sample match run were created as examples early in the project development and do not reflect the final points assigned to each part of the score.” This is no way to build trust among critical stakeholders!
In addition to keeping the promise made to all prior living kidney donors, UNOS’s priority protection is vital to encourage people considering living donation in the future — especially altruistic donors not seeking to save the life of a specific friend or family member. It is also important to reassure patients who may be reluctant to accept an organ from a living relative or close friend. Otherwise fewer people will offer organs for donation, causing longer wait times for those on the list.
There are currently more than 104,000 people on the U.S. transplant waiting list. In 2022, 6,465 living donors provided an organ — in most cases, a kidney — that took patients off that list, likely saving those lives and moving everyone else behind them on the list closer to receiving a lifesaving transplant. In the case of kidneys, living donations often last many years longer than deceased donor organs, reducing the need for repeat transplants, thus taking even more pressure off the waitlist.
When I offered my kidney to a stranger, I understood the physical and mental health risks I would be undertaking. I embraced them as the reasonable cost of saving someone else’s life. But I also trusted the transplant system to protect me if I needed a replacement organ in the future. It is imperative that UNOS ensure their new continuous distribution framework affirms the implicit contract our transplant system made with each of us who chose to donate a part of our own body to save the life of someone else.
Martha Gershun is a nonprofit consultant, writer, and community volunteer living in Fairway, Kan. Her book “Kidney to Share” (Cornell University Press, 2021), co-authored with John D. Lantos, M.D., chronicles her experience as a living kidney donor.

[/size]Living Kidney Donors Should Receive Money for Their Costs of Donating




Western India’s first fully robotic liver donor surgery performed at Jaslok Hospital
Mumbai’s Jaslok Hospital recently achieved a major milestone by performing Western India’s first fully robotic liver donor surgery on 40-year-old Sujata Sahu. Doctors, A S Soin, Kamal Yadav, Amit Rastogi and Pravin Agarwal performed this successful surgery a month ago.[/font][/color][/font][/size] Sujata’s landmark surgery made a life-saving liver transplant possible for her 69 year old father, Panchanan Patra, who was terminally ill with autoimmune related cirrhosis and cancer of the liver. Prior to the transplant, Sujata was very keen to save her father by donating a part of her liver. However, she was worried about the visible scar on the abdomen and pain from the surgery. Dr A S Soin, the lead surgeon and chairman of liver transplantation, said, “Sujata’s anxiety was not uncommon. Many prospective donors hesitate to donate for the same reason. She was relieved when we offered to operate with the fully robotic technique, which leaves no big scar on the abdomen, and the pain is minimal. The robotic approach has revolutionized liver donor surgery. Most of the post-operative pain and wound problems associated with open donor surgery due to abdominal wall trauma are avoided with this technique. In fact, in our experience, robotic surgery has helped to increase the willingness for donation by at least 30%”, added Dr Soin. Dr Pravin Agarwal, senior consultant hepatobiliary and liver transplant surgeon, explained, “Before the transplant, we performed a detailed liver matching and multi-system check to ensure the transplant was safe for both, the donor and the patient. A special Robotic liver surgery 3D-CT scan protocol was followed in preparation for smooth surgery. We proceeded once we found the pair to be suitably matched.” Dr Kamal Yadav, senior robotic transplant surgeon said that the donor operation was accomplished via small 8-10 mm holes in the abdomen, using fine robotic instruments that were controlled on the robotic console by us. When the donor’s partial liver was ready for removal, we retrieved it via a concealed 9 cm incision just above the pubic bone. Compared to the open cut, this incision is much smaller, hidden and does not involve any muscle cutting. This helps in quicker, relatively pain-free recovery for the donor who can return to work and normal activities much sooner than with the open incision. Elaborating on the coordination needed to accomplish the donor and recipient surgeries, Dr. Amit Rastogi, director of liver transplant surgery, said, “Panchanan’s surgery was performed simultaneously in the adjacent operating room, and meticulously synchronized with the donor surgery. We removed the patient’s entire diseased liver, and prepared the abdomen to receive the robotically retrieved hemi-liver. After bench surgery on the donor liver, it was finally transplanted into the recipient. Both procedures took us about 9 hours to complete.” Dr Aabha Nagral, the chief hepatologist at Jaslok, said, “This transplant sets an excellent example for those suffering from liver failure or liver cancer. Currently, we only transplant a fraction of the patients who need it to cure liver failure or hepatocellular cancer. This is because deceased liver donors are scarce and family members are reluctant for living donation as they are fearful of surgery. Young donors are the medically preferred donors, but they are most conscious of scars. Robotic surgery will encourage this group to volunteer to donate more often. Sujata was discharged 6 days and the recipient 12 days after the transplant. Barely a month later, they are well and leading normal lives.” Jitendra Haryan, CEO, Jaslok Hospital said, “It’s great to be the first hospital in Maharashtra to do the robotic liver donor surgery. At Jaslok we strive to provide the best available technology to our patients to improve clinical outcomes and create more awareness about organ donation to save more lives. The Jaslok Hospital & Research Centre is one of the oldest tertiary care, multi-specialty Trust hospitals of the country.[/font][/color]

UNOS welcomes competitive bidding process for next OPTN contract

UNOS supports Health Resources and Services Administration’s (HRSA) plan to introduce additional reforms into the nation’s organ donation and transplantation system. We also stand united with HRSA in our shared goal to get as many donor organs as possible to patients in need while increasing accountability, transparency and oversight.

We welcome a competitive and open bidding process for the next Organ Procurement and Transplantation Network (OPTN) contract to advance our efforts to save as many lives as possible, as equitably as possible. We believe we have the experience and expertise required to best serve the nation’s patients and to help implement HRSA’s proposed initiatives.

Numerous components of HRSA’s plan also align with our new action agenda, which is a list of specific proposals we outlined earlier this year aimed at driving improvement across the system.

We are committed to working with HRSA, U.S. Department of Heath and Human Services (HHS), Congress and others who care about this system so deeply to assist in carrying out these reforms and to do our part to improve how we serve America’s organ donors, transplant patients and their families.
Living Donation in the News / HRSA's new Organ Transplant Center Data Dashboard
« Last post by Clark on March 24, 2023, 04:42:58 PM »

Organ Donation and Transplantation[/size]HRSA’s Health Systems Bureau manages the nation’s Organ Donation and Transplantation program. This program works to extend and enhance the lives of individuals with end-stage organ failure for whom an organ transplant is the most appropriate therapeutic treatment.
[/size]HRSA makes available to the public both data and data visualizations on organ donation and transplantation. The aim of this information is to improve transparency around organ transplantation activities across the nation for the public.
[/size]The presented data are collected through a number of means by the nation’s Organ Procurement and Transplantation Network (OPTN). HRSA encourages viewers of this data to appreciate that these data are complex, and that additional data, information, and context may be necessary to properly address key policy issues around the nation’s organ transplantation systems. HRSA recommends users thoroughly review the important contextual information provided in the "Frequently Asked Questions" document.
[/size]Contact Information: If you have any questions or feedback on how we can improve these dashboards, please email AskDoT@hrsa.gov with the subject ‘OPTN Dashboard.’
[/size]N.B.: Interesting highlights when choosing "Organ Donation" => "Organ Donor Demographics" => "Living Donors":
[/size]- 36,377 of us in the past six years.
[/size]- Female/male split: 23,130/13,247 or 64%/36%, almost exactly 2:1. This ratio is nearly reversed for the recipients of our gifts every one of these years.
[/size]- Big drop in donor numbers in 2020, understandable, but a huge drop in 2022, no clear reason?
[/size]- Amazingly, 2,308 living donors did so without health insurance.
[/size]  No doubt much more to be discovered.


Biden Administration Launches Overhaul of Organ-Transplant System
Current system has drawn complaints for long wait times, wasted donations
By Stephanie Armour

March 22, 2023

The Biden administration on Wednesday announced initiatives aimed at transforming the U.S. organ-procurement system, adding more competition to improve transparency and accountability. The Health Resources and Services Administration said it would solicit multiple contracts for managing and improving the Organ Procurement and Transplantation Network, which was established by Congress in 1984 and manages the nation’s organ-transplant system under contract with the federal government. Soliciting multiple contracts could likely lead to breaking up the United Network for Organ Sharing, or UNOS, a nonprofit that administers the Organ Procurement and Transplantation Network…
Love this!  ;D

Representatives Harris, Plakon and Senator Stewart Introduce Nancy’s Law

March 19, 2023

Orlando State Representative Rita Harris, Longwood State Representative Rachel Plakon, and Orlando State Senator Linda Stewart filed the bipartisan Nancy’s Law, House Bill 1053 and Senate Bill 1186. This legislation intends to streamline the process for organ donations by live donors.
Nancy Whited, an amazing Orlando resident who did much for her community and loved ones, suffered from polycystic kidney disease and scleroderma, and her declining kidney function required her to have kidney dialysis and eventually a kidney transplant. Unfortunately, Nancy was removed from the kidney transplant list due to complications from an error in a prescribed medication that affected her bone marrow. Despite her reluctance to ask, several individuals stepped forward as live donor candidates for Nancy, resulting in two candidates who were perfect matches. Though one donor’s paperwork seemed to get lost in the administrative process, the other donor moved further in the process, but it took nine months to get the appropriate tests scheduled. When Nancy went in for the transplant procedure, her cardiac function had decreased so significantly that the procedure caused her to go into heart failure, which eventually ended her life.
While one cannot definitively state that an earlier transplant would have extended Nancy’s life significantly, any reasonable person would say that a healthier organ donor recipient is more likely to have a better outcome.
This legislation will direct the Florida Department of Health to adopt rules that will streamline the process of medical testing by living organ donors and the transfer of medical records between physicians of donors and recipients.
“For me, this is so personal to me because Nancy was my friend. Anyone that knew Nancy knew how incredibly kind she was. She was also incredibly passionate about educating the community about organ donation and the obstacles people face in the process,” said Representative Harris, a Democrat. “While Nancy is no longer with us, her story will be a legacy and tireless advocacy will continue to help others.  May her memory continue to be a blessing.”
“I’m proud to stand with Representative Harris on this important bipartisan legislation,” said Representative Plakon, a Republican. “With over 5,000 Floridians waiting for life-saving organ donations, Nancy’s Law will streamline the process with the ultimate goal of saving lives.”
“It is important that we reevaluate our processes from time to time so that we do not end up in a system that delays critical care,” said Senator Stewart, a Democrat. “It is unacceptable for redundant and inefficient administrative procedures to hold up potentially life-saving transplants.”
View House Bill 1053[/url] and Senate Bill 1186[/url] for more information.[/font][/size]

Black Living Donor Choir: Why every singer has chosen to donate a kidney
A choir in Brixton is calling on more people in the black community to donate a kidney to a loved one.
Each member of the Black Living Donor Choir donated a kidney to their partner or relative when theirs was failing.
Charity Kidney Care UK says black people are five times more likely to develop kidney failure than other communities and three times more likely to need a kidney transplant.
Vicky Gordon who donated to her husband told ITV News London: "It was the best thing I have ever done, it was scary but it was a good scary because at the end of the day I look back and it has benefitted him, my children, his family.
"It had had a ripple effect everybody has benefited from it and he s doing really, really well."
Dela Idowu set up the Black Living Donor Choir last year driven by a desire to help transform people's lives.
She said: "Having surgery is difficult but if you've got somebody within your family that needs a transplant you can change their life, transform their life by becoming a living donor.
"It is just an amazing thing to do!"
Members of the choir described their involvement as "enlightening and fun" as each person involved represents a life saved.
They are hoping more people will join them.
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