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Living Donation in the News / UC Davis Health Performs First Robotic Nephrectomy on Living Kidney Donor

« Last post by Clark on April 15, 2023, 12:57:32 PM »

https://www.miragenews.com/uc-davis-health-performs-first-robotic-981991/

UC Davis Health Performs First Robotic Nephrectomy on Living Kidney Donor

UC Davis Health transplant surgeons have performed the first fully robotic nephrectomy on a living donor in the Sacramento region.
A living donor nephrectomy is a surgical procedure to remove a healthy kidney from one person for transplant into someone else whose kidneys no longer function properly.
Transplant surgery is one of 14 specialties in which UC Davis Medical Center offers minimally invasive, robotic-assisted technology.
“The application of these next-generation technologies underscores our commitment to innovation and excellence in patient care,” said Bahareh Nejad, medical director of Robotic Surgery. “The institutional support we have received to grow the UC Davis Robotics Program has allowed us to provide novel approaches to patient care leading to more minimally invasive surgeries. I look forward to pushing the envelope of patient care and supporting further expansion of our robotic surgery program.”
Advances in kidney transplantation
The robotic living donor nephrectomy surgery was carried out using the latest Intuitive Surgical Robotic System that has small robotic arms that imitate natural dexterity. The robotic arm was controlled by a team of surgeons from a console which enabled the removal of the donor kidney through small incisions.
“The robotic arm’s instrumentation offers a greater range of motion than the human wrist with efficient and precise action,” said Junichiro Sageshima, surgical director of the living donor kidney transplant program, who performed the procedure. “This provides us with easier access to areas that are hard to reach and better visualization.”
Traditionally, living donor nephrectomies have been performed using either a laparoscopic technique or open surgery. Robotic-assisted procedures enable smaller incisions to perform the transplant, which often leads to a quicker recovery with less pain and scarring than a traditional surgery.
“The advantage of this approach lies in its safety as the smaller incisions, combined with greater precision, help reduce pain and scarring, which ultimately leads to rapid recovery, less hospitalization, and a faster return to normal life,” Sageshima added.
Transplant center growth
The robotic living donor nephrectomy program is a multidisciplinary collaboration. It includes operating room staff, nurses, the transplant and robotic surgery teams and leadership, who provided the necessary tools and facility space to deliver the best care possible.
“This new procedure positions the UC Davis transplant program for continued growth and advancement in the services it provides and the quality of care it delivers,” said Sophoclis Alexopoulos, chief of the Division of Transplant Surgery. “This expanded use of robotic tools in transplantation is an example of our faculty’s ongoing mission to introduce new techniques to enhance patient care and safety.”
Moving forward, kidney removal or nephrectomy procedures, will be done using robotic and laparoscopic techniques, depending on the availability of robotic systems.

Living Donation in the News / Selfless Giving: Living Kidney Donors Like Laura Laxton Are Saving Lives

« Last post by Clark on April 15, 2023, 12:54:39 PM »

https://atriumhealth.org/dailydose/2023/04/04/laura-laxton-patient-story

Selfless Giving: Living Kidney Donors Like Laura Laxton Are Saving Lives

Every 14 minutes, someone in need is added to the kidney transplant list. April is National Donate Life Month, a time to raise awareness about the need for donations. Laura Laxton, a copywriting strategist for Atrium Health Wake Forest Baptist, donated a kidney in 2021. Outcomes from a living donor are often better for the recipient, and the chance of living donors having any problems with their remaining kidney is only 0.3%.

Kidneys are the most donated organ, and a record 25,000-plus kidneys were donated in 2022. Because people have two kidneys but only need one to survive, they are the most common living organ donation.
Unfortunately, despite the increase in donations, the need still outweighs the supply. According to the National Kidney Foundation, every 14 minutes, someone is added to the kidney transplant list. April is National Donate Life Month. It is essential to raise awareness about what the donation process entails and how it impacts donors’ lives post-donation.
Helping a Family Friend
Laura Laxton decided to donate due to the need of a family friend. The copywriting strategist for Atrium Health Wake Forest Baptist began the testing process along with her husband. He was eliminated early on, but she proceeded even after discovering she wasn’t a match for her friend.
Laura found the process fascinating. “There’s so much involved in trying to find the best match,” she explains. Laura spent several mornings at the hospital, undergoing a variety of tests. “If you have one kidney that’s better than other, they leave you with that one,” she says. “They really make the health of the donor their primary consideration.”
The Donation Process
Dr. Colleen Jay, a renal transplant surgeon with Atrium Health Wake Forest Baptist, performed Laura’s surgery. She explains that the evaluation of who can be a living kidney donor involves a team that considers all aspects of the individual donor’s health. The team includes medical and surgical doctors, a social worker and an independent living donor advocate.
“One of our commitments is if the donor is ever feeling pressured, we help them by saying they’re not eligible,” Jay explains. “We want to protect the donors and ensure they are truly there voluntarily.”
While people in need of a kidney can receive the organ from a deceased person, outcomes from a living donor are often better in terms of the longevity of the recipient and the kidney. For living donors, Jay says the chance of them having any problems in the future with their remaining kidney is only 0.3%.
“Our approach at Atrium Health Wake Forest Baptist is to work hard to match people with the best organs for them as quickly as possible,” explains Jay. The hospital participates in multiple programs to help facilitate that, including the National Kidney Registry.
The surgery is done laparoscopically and robotically. Because the procedure is minimally invasive, donors typically only spend one night in the hospital. Jay tells most donors to plan to take three to four weeks away from work to recover.
Surgery and Beyond
Laura became part of a chain donation as a match for a woman in Minnesota. “Someone was donating for her, but that person’s kidney was a match somewhere else,” she says. But the night before the surgery, the chain fell apart. Laura was quickly matched again. “My kidney didn’t fly around the country,” she laughs. “It just went down the hall.”
She credits her family’s support with making the process easy. “My kids and husband made it so that I could do this.”
Laura does not know who received her kidney in November 2021, but she knows his surgery went well. As for her recovery and ongoing health, it has been much easier than she imagined.
“It really had zero impact on my quality of life,” says Laura, who adds that she went through a period of feeling guilty for not having donated a kidney earlier. “If more people knew how easy it is, they would be willing to donate.”
Eventually, Laura’s friend found a match. “It is shocking the need for kidneys in this country. I didn’t know how great it was,” she shares. “The more I learned about dialysis and their quality of life, the more I thought, ‘If donation can save someone from going through all that, why wouldn’t I?’’”

Living Donation in the News / Researchers redesign lung transplant allocation system using data analytics

« Last post by Clark on April 15, 2023, 12:45:56 PM »

https://www.prnewswire.com/news-releases/mit-sloan-school-of-management-researchers-help-redesign-national-lung-transplant-allocation-system-using-data-analytics-301782718.html

MIT Sloan School of Management researchers help redesign national lung transplant allocation system using data analytics
New system's goal: Reduce overall deaths and increase access for patients waiting for lung transplants
CAMBRIDGE, Mass., March 28, 2023 /PRNewswire/ -- United Network for Organ Sharing (UNOS) has rolled out a new organ allocation system designed to be more equitable and effective for patients in need of lung transplants.
As of March 9, 2023, all donated lungs across the US are allocated based on a new policy, developed with the assistance of researchers from MIT Sloan School of Management. The policy considers a range of factors to determine which patients in need of donor lungs will be prioritized to get them. The policy change is predicted to reduce overall deaths and increase access for many patients waiting for a lung transplant.

Despite the record numbers of transplants performed in recent years, there are not enough organs of all types for patients who need them. More than 100,000 patients are currently on the national waiting list, while each year, approximately 65,000 new candidates are registered. In 2022, more than 42,000 received transplants, of which around 2,600 were lung transplants.
Working with UNOS, MIT Sloan's Dimitris Bertsimas, Boeing Leaders for Global Operations Professor of Management and professor of operations research, and Nikolaos Trichakis, associate professor of operations research, modeled a points-based framework called continuous distribution (CD) based on artificial intelligence and machine learning.
The new system will be more equitable and patient-focused, said Marie Budev, D.O., M.P.H., who serves as chair of the Organ Procurement and Transplantation Network (OPTN) Lung Transplantation Committee. UNOS operates the OPTN under contract with the US Department of Health and Human Services.
"We are excited about the ability of the new system to yield gains across all fronts," Trichakis said. "The new system is projected to be more equitable across different blood groups, height ranges, sexes, races, age groups, and geographic areas."
"The work underscores the power of data, artificial intelligence and optimization to achieve equitable and efficient allocations of donated lungs,'' Bertsimas said. "We are hopeful that our work will extend to all other organ allocation systems."
Their underlying work captured in their study, Applying Analytics to Design Lung Transplant Allocation Policy, which they co-wrote with MIT Sloan doctoral student Theodore Papalexopoulos and research and policy analysts from UNOS, will be published in the September-October 2023 edition of the INFORMS Journal on Advanced Analytics.
Under the previous system, candidates were placed in priority tiers. Patients whose criteria placed them at the boundary between tiers–just inside or outside a geographic tier, for instance–could have vastly different chances of getting a transplant.
The MIT Sloan researchers focused on the interplay of fairness and efficiency in resource allocation. In 2011, Trichakis, who holds a PhD from MIT in operations research, earned his thesis centered around issues of fairness, with the optimal design of organ allocation policies being one of the applications considered. In 2019, soon after Trichakis presented his and Bertsimas' findings to UNOS, the nonprofit organization that oversees the nation's transplant system, an MIT team, including Papalexopoulos, Bertsimas and Trichakis, started collaborating with UNOS on a new system.
"Our previous research was directly applicable to the problem that UNOS was trying to solve–the design of new, efficient and fair organ allocation policies," Trichakis said.
Studies have documented geographic and gender disparities for liver and kidney allocation, among others. The mathematical model developed by Bertsimas and Trichakis showed that a CD points system based on medical urgency, proximity to the donor hospital, age, and several other factors would result in fewer disparities related to age, gender and blood type, fewer deaths of patients awaiting transplants, and fewer post-transplant deaths.
"Our model utilized artificial intelligence and machine learning to analyze tradeoffs among patient outcomes and to come up with an optimal system design," Bertsimas said.
Data for candidates seeking a deceased-donor transplant are maintained by UNOS in its role as the OPTN, the nation's organ transplant system. When a new organ donor's information is entered into the database, the system produces a computerized ranking of candidates.
Under continuous distribution, lung waiting list candidates receive points, up to a maximum of 100. The first 50 points are related to two equally weighted criteria: how quickly a patient needs a transplant and the candidate's likelihood of surviving up to five years with the transplanted lung. A potential recipient would get 20 points for being under 18 when they register for an organ transplant, and five points if they had previously donated an organ.
Geographic points would be determined by the proximity of the candidate's hospital to the hospital where the organ is available. Data is gathered on potential recipients' physical stature–lungs need to fit in the rib cage.
Candidates with harder-to-match blood types will now receive a boost in points over those with more common blood types. Another factor considered is an immunological profile that can limit the number of donors who could be a match. Previously, those with certain antibody profiles and those who were taller or shorter than average tended to get fewer transplants.
"The CD-based system prioritizes patients by considering multiple patient factors at the same time," Trichakis said. "This means that the transplant system can be more fair, more efficient and more flexible for the entire patient population."
Following the success of the initial MIT-UNOS collaboration, the MIT Sloan researchers have extended their work: more students across MIT Sloan are working with larger teams within UNOS to develop new systems for kidneys and pancreases. "A new protocol that we helped develop for kidneys will soon be presented to OPTN policymakers for consideration," Bertsimas said.

Living Donation in the News / Re: HRSA Announces Organ Procurement and Transplantation Network Modernization

« Last post by Clark on April 15, 2023, 12:40:25 PM »

https://unos.org/news/unos-welcomes-competitive-bidding-process-for-next-optn-contract/

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 Health 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 Announces Organ Procurement and Transplantation Network Modernization

« Last post by Clark on April 15, 2023, 12:34:27 PM »

https://www.hrsa.gov/about/news/press-releases/organ-procurement-transplantation-network-modernization-initiative

HRSA Announces Organ Procurement and Transplantation Network Modernization Initiative
March 22, 2023

Initiative includes the release of new organ donor and transplant data; prioritization of modernization of the OPTN IT system; and call for Congress to make specific reforms in the National Organ Transplant Act

Today, the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services (HHS), announced a Modernization Initiative https://www.hrsa.gov/organ-procurement-transplantation-modernization that includes several actions to strengthen accountability and transparency in the Organ Procurement and Transplantation Network (OPTN):

Data dashboards detailing individual transplant center and organ procurement organization data on organ retrieval, waitlist outcomes, and transplants, and demographic data on organ donation and transplant;
Modernization of the OPTN IT system in line with industry-leading standards, improving OPTN governance, and increasing transparency and accountability in the system to better serve the needs of patients and families;
HRSA’s intent to issue contract solicitations for multiple awards to manage the OPTN in order to foster competition and ensure OPTN Board of Directors’ independence;
The President’s Fiscal Year 2024 Budget proposal to more than double investment in organ procurement and transplantation with a $36 million increase over Fiscal Year 2023 for a total of $67 million; and,
A request to Congress included in the Fiscal Year 2024 Budget to update the nearly 40-year-old National Organ Transplant Act to take actions such as:
Removing the appropriations cap on the OPTN contract(s) to allow HRSA to better allocate resources, and
Expanding the pool of eligible contract entities to enhance performance and innovation through increased competition.

“Every day, patients and families across the United States rely on the Organ Procurement and Transplantation Network to save the lives of their loved ones who experience organ failure,” said Carole Johnson, HRSA Administrator. “At HRSA, our stewardship and oversight of this vital work is a top priority. That is why we are taking action to both bring greater transparency to the system and to reform and modernize the OPTN. The individuals and families that depend on this life-saving work deserve no less.”

Today, HRSA is posting on its website a new data dashboard https://data.hrsa.gov/topics/health-systems/organ-donation to share de-identified information on organ donors, organ procurement, transplant waitlists, and transplant recipients. Patients, families, clinicians, researchers, and others can use this data to inform decision-making as well as process improvements. Today’s launch is an initial data set, which HRSA intends to refine over time and update regularly.

This announcement also includes a plan to strengthen accountability, equity, and performance in the organ donation and transplantation system. This iterative plan will specifically focus on five key areas: technology; data transparency; governance; operations; and quality improvement and innovation. In implementing this plan, HRSA intends to issue contract solicitations for multiple awards to manage and improve the OPTN. HRSA also intends to further the OPTN Board of Directors’ independence through the contracting process and the use of multiple contracts. Ensuring robust competition in every industry is a key priority of the Biden-Harris Administration and will help meet the OPTN Modernization Initiative’s goals of promoting innovation and the best quality of service for patients.

Finally, the President’s Budget for Fiscal Year 2024 would more than double HRSA’s budget for organ-related work, including OPTN contracting and the implementation of the Modernization Initiative, to total $67 million. In addition, the Budget requests statutory changes to the National Organ Transplant Act to remove the decades-old ceiling on the amount of appropriated funding that can be awarded to the statutorily required vendor(s) for the OPTN. It also requests that Congress expand the pool of eligible contract entities to enhance performance and innovation through increased competition, particularly with respect to information technology vendors.

HRSA recognizes that while modernization work is complex, the integrity of the organ matching process is paramount and cannot be disrupted. That is why HRSA’s work will be guided by and centered around several key priorities, including the urgent needs of the more than 100,000 individuals and their families awaiting transplant; the 24/7 life-saving nature of the system; and patient safety and health. HRSA intends to engage with a wide and diverse group of stakeholders early and often to ensure a human-centered design approach that reflects pressing areas of need and ensuring experiences by system users like patients are addressed first. As a part of this commitment, HRSA has created an OPTN Modernization Website to keep stakeholders informed about the Modernization Initiative and provide regular progress updates.

https://www.hrsa.gov/organ-procurement-transplantation-modernization

HRSA Announces Organ Procurement and Transplantation Network Modernization Initiative

On March 22, 2023, the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services (HHS), launched the Organ Procurement and Transplantation Network (OPTN) Modernization Initiative to better serve the needs of patients and families. The Initiative will strengthen accountability, equity, and performance in the organ donation and transplantation system through a focus on five key areas: technology; data transparency; governance; operations; and quality improvement and innovation.

Background

Almost 40 years ago, the National Organ Transplant Act established the OPTN to coordinate and operate the nation’s organ procurement, allocation, and transplantation system and to increase access to donor organs for patients with end-stage organ failure.

Specifically, the statute charges the OPTN with operating a national list of individuals who need organs and a national computer system to match organs with individuals on the waiting list. The OPTN is governed by a Board of Directors and is charged with development and implementation of policies regarding organ allocation; assistance in the nationwide distribution of organs among transplant patients by operating a 24/7 system to match potential donors with individuals on the waiting list; actively working to increase the supply of donated organs; adoption and use of quality standards for collecting and transporting donated organs; providing information to physicians and other health professionals; collection, analysis, and publication of data on organ donation and transplants; and, conducts studies and demonstration projects to improve procedures for organ procurement and allocation.

Today, the OPTN is comprised of nearly 400 member organizations and there are more than 104,000 adults and children on the waitlist.

Accountability efforts to date

Over the past two years, HRSA has taken steps to improve accountability in OPTN functions, including strengthening contract requirements and oversight.
Required Enhanced OPTN Security and Performance – In September of 2021, HRSA required the current OPTN contractor to take a series of actions to improve security and performance, including to increase security of the OPTN IT system, and improve the use of secure processes for system access and information exchange.
Sought Expert and Community Input on Ways to Improve Transparency, Accountability, and Performance in OPTN Operations – In April of 2022, HRSA published a formal Request for Information (RFI) on ways to improve patient and donor engagement, strengthen accountability throughout the system, and best leverage modern technology to support this lifesaving work. HRSA received responses from patient advocates, technology experts, OPTN members and other stakeholders. Responses focused on the need to modernize the OPTN system technology without compromising patient safety.
Convened a Conference with Patients and Families to Strengthen Performance Measures – In July 2022, HRSA created a forum for patients, families, and interested stakeholders to share their concerns and recommend future metrics for the transplantation system that support informed decision making for patients with organ failure, their families, and their health care teams. The Scientific Registry of Transplant Recipients is in the process of developing new metrics based on the conference feedback and recommendations.
Formally Engaged Technology Partners to Improve OPTN IT Systems – In July 2022, HRSA initiated ongoing engagement with the United States Digital Service (USDS)—which is dedicated to improving government services through technology modernization and data science—to leverage their expertise and advice as HRSA implements the OPTN Modernization Initiative.
Ongoing Collaboration with the Centers for Medicare & Medicaid Services (CMS) and other HHS Agencies – HRSA continues to collaborate with CMS and other HHS agencies on actions related to improving federal oversight, alignment and support of the organ donation and transplantation system.

OPTN Modernization Initiative

In response to the reform efforts to date, market research, RFI input, expert feedback, and engagement with USDS, HRSA concluded that achieving the agency’s objectives for enhanced accountability, equity, and performance required an iterative and modular modernization approach. Increasingly used by federal agencies and commercial organizations to modernize programs anchored by legacy technology and practices, iterative modernization approaches involve incorporating modularized components or processes that are developed, tested, and integrated, in parallel to the existing system over time, to maintain patient safety throughout the process while mitigating the risks involved in transforming a system that provides 24/7 life-saving services.

Leveraging this approach, HRSA is announcing a major new step in the agency’s reform efforts by embarking on a multi-year initiative to modernize the OPTN with the goal of increasing high-quality organ donation and transplantation. This initiative is designed in a way to meet the needs of:
Patients and families by further strengthening and providing equitable access to transplantation, improving safety and health outcomes, and empowering patients and providers with the data needed to make informed, shared decisions.
The organ donation, procurement, and transplantation community by supporting and facilitating the delivery of high-quality, equitable care and continuous improvement.
Researchers, scientists, and other stakeholders by investing in the advancement and innovation of the OPTN.
The public by providing transparency and accountability for delivering results in an efficient and effective manner.
To meet these needs, HRSA will focus on five key areas of reform as part of the Modernization Initiative in a manner the puts patients first, prioritizes information flow to clinicians, promotes innovation through continuous competition, and enhances transparency and accountability.

OPTN modernization aims

The OPTN Modernization Initiative will accelerate progress in five key areas to achieve the following aims:
Technology – The OPTN IT system is reliable, secure, patient-centered, user-friendly, and reflective of modern technology functionality. There is continuous focus on improved IT system functionality and security, while ensuring continuity of services, protecting patient safety, and accelerating innovation in line with industry-leading standards.
Data Transparency and Analytics – OPTN data is accessible, user-friendly, and patient-oriented. Modernization process provides easily accessible, high-quality, and timely data to make informed patient, donor, and clinical decisions; measure and evaluate program performance; inform oversight and compliance activities; and support the advancement of scientific research.
Governance – The OPTN Board of Directors is high-functioning and has greater independence; represents the diversity of communities; and delivers effective policy development.
Operations – The OPTN is effective and accountable in its implementation of organ policy, patient safety and compliance monitoring, organ transport, OPTN member support, and education of patients, families, and the public.
Quality Improvement and Innovation – The OPTN promotes a culture of quality improvement and innovation across the network by leveraging timely data and performance feedback, collaborative learning, and strategic partnerships.

Moving forward

For the first phase of the OPTN Modernization Initiative, initial steps include:
Making Data Available for Informed Decisions: To assist patients, clinicians, researchers, and others, today HRSA is publishing organ donation and transplantation data to improve decision-making as well as process improvements. Today’s launch is an initial data set, which HRSA intends to refine and update regularly over time.
Securing Support for Modernization:
As announced on March 9, the President’s FY 2024 Budget more than doubles the resources available to support HRSA’s organ transplantation programs, including the OPTN Modernization Initiative ($67 million).
The President’s Budget also includes legislative proposals critical to enhancing HRSA’s ability to achieve our modernization aims by updating the nearly 40-year-old National Organ Transplant Act, including removing the appropriations cap on the OPTN contract(s) to allow HRSA to better allocate resources and expand the pool of entities that are eligible to compete for contracts to support the OPTN, in order to enhance performance and innovation through increased competition.
Building HRSA capacity for modernization: HRSA has procured program management support services to assist with its comprehensive approach for user-centered, wide stakeholder engagement on modernization design and implementation.
Ongoing consultation with USDS: HRSA will continue to consult with USDS as it works to create an agile approach to OPTN IT modernization.
Engaging Stakeholders: In late Spring, HRSA will continue its engagement with a diverse group of stakeholders early and often to identify and prioritize pressing areas of need for patients and clinicians.
Collaborating with Industry: In late Spring, HRSA will engage the IT community through Industry collaboration activities providing a high-level overview of the modernization efforts and forums for vendor participation in anticipation of future activities.
Soliciting Proposals for Modernization: HRSA intends to issue contract solicitations for multiple awards to manage and improve the OPTN. HRSA also intends to further the OPTN Board of Directors’ independence through the contracting process and the use of multiple contracts. Ensuring robust competition in every industry is a key priority of the Biden-Harris Administration and will help meet the OPTN Modernization Initiative’s goals of promoting innovation and the best quality of service for patients.

HRSA will keep stakeholders informed about the Modernization Initiative and provide regular progress updates on this website.

Living Donation in the News / Nevada Bill Protects Organ Donors from Insurance Company Discrimination

« Last post by Clark on April 15, 2023, 12:20:27 PM »

https://www.2news.com/news/bill-protects-organ-donors-from-insurance-company-discrimination/article_9ae9cd56-d40c-11ed-aa65-474ab276d136.html

Bill Protects Organ Donors from Insurance Company Discrimination
Josh Meny Apr 5, 2023

A law change is likely coming to Nevada would protect living organ donors from discrimination from insurance companies.
Senate Bill 132 would protect living organ donors in a policy or contract of life insurance, life annuity or health insurance.
It has major support from senate democrats as well as the republican senate minority leader.
Democratic Las Vegas Senator Julie Pazina is leading the way.

“Nevada is one of eight states which currently can discriminate against living organ donors, and having found that out from a Nevadan who is currently a living organ donor, it was very important for me to work alongside him on SB132 which essentially puts protections in place for living organ donors. So, if someone were to give a life-saving gift, be it a kidney, be it bone marrow, then their insurance company can't in turn choose not to cover them or choose to raise premiums,” said (D- Las Vegas) Senator Julie Pazina.
One might assume the insurance industry would push back on this reform, but Pazina tells us that by and large, it's not the case.
“They were very supportive, I think it's already happening in 42 states where living organ donors are protected and so it's nothing new, it's not asking for a new procedure to be covered. It's just asking to protect those who are giving the gift of life, so the insurance companies that day testified in support,” explained Pazina.
SB132 passed unanimously in the Senate, and it now heads for a house floor vote.

Living Donation in the News / I was able to donate a kidney to save a life, but I had to leave Kansas City

« Last post by Clark on April 15, 2023, 12:16:45 PM »

https://www.kansascity.com/opinion/readers-opinion/guest-commentary/article273504620.html

I was able to donate a kidney to save a life, but I had to leave Kansas City to help | Opinion BY MARTHA GERSHUN
MARCH 24, 2023 5:00 AM

Nearly 106,000 Americans are currently on the transplant waiting list. Sadly, 17 of them will die each day waiting for the organ that could save their lives. On Dec. 30, 2022, Tonya Ingram was one. She was a 31-year-old poet who had recently shared her story before Congress while highlighting the need to increase the number of organs for transplant. It was too late for Tonya. But her story is a powerful reminder that we must do better for those still waiting on an organ transplant. Over the past 20 years, we’ve made steady, yet insufficient, progress to increase the number of organs from deceased donors. Last year set an all-time record of 14,904, according to the nonprofit Donor Alliance. But the number of living organ donors has remained disappointingly flat for the past two decades — only 6,466 in 2022 — while the waiting list continues to grow. TOP VIDEOS Top Videos 01:20 01:30 Museum opens for famedKansas aviator Kidneys from living donors offer many advantages as they often last twice as long as organs from deceased donors. This means better outcomes for patients while reducing the need for repeat transplants if organs fail. And while only so many deceased donors will be available in any given year, there is a huge untapped opportunity for living donations to save lives. Becoming a living donor is not easy. It involves significant testing, a surgical procedure, recovery time and much more. But it can also save the life of a loved one or a stranger in need. When people are ready to take this step, we should make it as easy as possible for them to do so. My personal experience may offer some insights on why it has been so difficult to increase the number of living donations. In 2018, I donated one of my kidneys to a woman I read about in the newspaper. It was a profoundly meaningful experience for me and likely saved her life. But it was also tremendously complicated, frequently exasperating and shockingly expensive. Get unlimited digital access Try 1 month for $1 CLAIM OFFER A major transplant clinic in my hometown of Kansas City rejected my recipient, so she chose to seek care at the Mayo Clinic in Minnesota. This meant a 12-hour round-trip drive and many days away from home with my designated caregiver (my husband) for medical appointments, evaluations and the ultimate surgery and follow-up appointments. I am retired, but my husband had to miss 18 days of work. Our travel expenses alone totaled over $5,000. I also had to collect many different test results from my local providers — including required procedures such as a mammogram, colonoscopy and pap smear — and ship numerous blood and urine samples to the Mayo Clinic. While I had the time and resources to navigate these requirements, others may not have the same flexibility to take time off work or leave their families and responsibilities. LIVING DONOR SUPPORT ACT IN CONGRESS My recipient offered to reimburse our expenses. But not every transplant recipient can afford to do so. And not every donor can afford to float those expenses while waiting for reimbursement. These circumstances shouldn’t be the difference between someone living or dying. That’s why I am working with the Kidney Transplant Collaborative, a nonprofit organization dedicated to improving America’s transplant system. It’s also why I support the Living Donor Support Act to help cover donor costs and increase living kidney donations. Passing this commonsense legislation and eliminating barriers that prevent living donations would save lives. Only about 10% of living donors give to strangers, while the other 90% donate to help save family, friends or colleagues. They are highly motivated to help. While many are deemed healthy enough to donate safely, far too many are unable to proceed because of logistical and financial barriers. Thousands of Americans are interested in donating an organ to save a loved one or a stranger. But we need a system in place that encourages it, not one that makes it so daunting to consider. This should include a national education program to bring potential donors in the door, a navigator system to help potential donors through the process, a reimbursement system to ensure donors are made whole for their contribution and a national system to track living donors and transplant organs. On the Vine A weekly conversation between The Kansas City Star and the minority communities it serves, bringing you the news and cultural insights from across the Kansas City region and abroad, straight to your inbox every Thursday. SIGN UP This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply. Fortunately, we can do all of this. And it could save the federal government up to $150,000 on every kidney transplant if Congress adopts the Living Donor Support Act. Giving away a part of your body to save another life is an act of extreme altruism. When Americans are willing to do it, we should help them. Martha Gershun is a living kidney donor, writer and consultant living in Fairway. She is also a special adviser to the Kidney Transplant Collaborative, a 501(c)(4) nonprofit dedicated to increasing kidney transplants and decreasing financial obstacles and other challenges kidney patients, donors and their families experience with the transplant experience.

Living Donation in the News / Additional data on long-term outcomes incorporated into OPTN living donor data

« Last post by Clark on April 14, 2023, 10:32:23 AM »

https://unos.org/news/additional-data-living-donor-long-term-outcomes/

Additional data on long-term outcomes incorporated into OPTN living donor data

The Organ Procurement and Transplantation Network (OPTN) Living Donor Committee was recently briefed about the incorporation of additional data on living donor long-term outcomes into OPTN data and reporting. These data include approximately 1776 additional verified deaths among all living donors since 1994, and will be added to the national OPTN standard transplant analysis and research (STAR) file in April 2023.
The enhanced data allow review of living donor deaths that occurred more than two years after donation, which is beyond the OPTN policy-stipulated mandatory reporting period. In most cases, the additional verified deaths occurred well after donation, with an average time of 18.5 years between donation and death. The incorporation of this newly-verified data has the potential to benefit the donation and transplant community’s understanding of living donation. There are no impacts on policy monitoring or research related to transplant candidate or recipient outcomes.

How the OPTN identifies living donor deaths
The OPTN and its members use information on living donor deaths for policy monitoring, program evaluation, and patient outcomes assessment. OPTN policy currently requires transplant programs to follow up on the status of living donors for a minimum of two years, and recovery hospitals to report deaths within two years of donation as soon as they become aware of them.

Additionally, the OPTN identifies living donor deaths when living donors subsequently appear on organ transplant waiting lists and experience a death while waiting for an organ transplant; the OPTN crosschecks internal records across all available OPTN data to locate these individuals.

The OPTN has collected data on living donor deaths since 1999 and makes it available in OPTN data reporting and in external STAR files. STAR files are limited datasets that contain de-identified patient-level information about transplant recipients, deceased and living donors, and waiting list candidates back to Oct. 1, 1987. The national STAR file is produced quarterly.

Verifying living donor deaths through external sources
Long-term monitoring of living donor outcomes presents challenges for the OPTN member community. Most of these deaths occur many years after donation and outside of the two-year post-donation time frame where OPTN members are required to report under current policy. Importantly, only those OPTN member-reported deaths and deaths from external sources that are also verified against a second external source are permitted to be released at the individual level.

An external, administrative source of deaths across the United States is being used to identify deaths among living donors that OPTN members have not reported. This secondary external source requires that the OPTN first verify those deaths found in their records against an additional external source before adding them to OPTN records. These are the “verified” deaths being added to OPTN data on living donors. The death information being added does not provide any information about whether the death was related to the act of donation or suggest by itself that living donation is riskier than was previously known.

The living donor deaths from this external source will be added monthly to OPTN data, and will be captured in every quarterly update of the national STAR file. The OPTN continuously evaluates the STAR files to ensure they contain the most current and complete data reported to the OPTN. The OPTN provides these files for use by quality improvement professionals, public health entities, academic researchers, and others.

More about OPTN data
The OPTN’s secure transplant information database contains all national data on:
Candidate waiting list information
Organ donation and matching
Transplantation
The OPTN also has visual dashboards that allow users to explore current and historic donation and transplant trends, as well as trends related to access to deceased donor transplants among active candidates on the waiting list in the United States.
Explore national trends in the OPTN Metrics Dashboard
Explore equity trends in the Access to Transplant Dashboard
Anyone may request data from the OPTN. If you are at an OPTN member organization, please submit your data request inside the OPTN Computer System (known as Secure Enterprise).
For all other data requests, use this form on the OPTN website, after reviewing data request instructions.
Questions?
Please contact STARfile@unos.org

Living Donation in the News / UNOS: New milestone reached in kidney donation and transplant

« Last post by Clark on April 14, 2023, 10:26:57 AM »

https://unos.org/news/in-focus/new-milestone-kidney-donation-and-transplant/

New milestone reached in kidney donation and transplant

More than 25,000 lifesaving kidney transplants were performed in 2022, a new record.
In 2022, more than 25,000 kidney transplants were performed in a single year for the first time. This represents more than half of the total number of transplants for the year, which continued a decades-long trend of increases.
Of those transplants:
Deceased donor kidney transplants increased by 5 percent (19,636 in 2022)
5,863 came from living donors
1,086 of those living donors participated in a Kidney-Paired Donation program
703 patients were under 18 when they received a kidney

New tools aim to increase kidney utilization
Working with the community, UNOS is leading system innovations that are predicted to improve kidney utilization, lower pre-transplant mortality, and give more kidney candidates access to lifesaving transplants.
In January 2022, the Offer Filters tool launched nationally in UNet. Currently in use by 123 transplant programs, Offer Filters analyzes hospitals’ kidney acceptance trends and automatically filters out the offers doctors have not historically accepted. Filters can be created, updated and activated at the program level to ensure kidneys are being offered to accepting programs faster. The tool also shows transplant teams if offers they filtered out were accepted along with other recipient data, allowing them to refine their own acceptance practices and filters.
On average, a program that enables Offer Filters bypasses 48.7 percent of their offers, saving those transplant teams from reviewing offers they never intended to accept, and getting offers to programs willing to accept them for their patients faster.
Continuing innovation to increase organ utilization and the number of transplants, UNOS launched its Predictive Analytics tool for DonorNet Mobile nationally in January 2023. The decision-making tool shows transplant programs the predicted impact accepting or declining an organ offer could have for a patient. The analytics tool displays the predicted time the patient may need to wait to receive another offer of similar quality, and a prediction of the patient’s mortality over that span of time.
Early results from a pilot group of 15 transplant programs using the tool in 2022 show their acceptance rates increasing from 16.8 percent to 19.7 percent. A risk-adjusted study of the results is underway and suggests that the analytics are helping to increase organ acceptance.

Living Donation Forum / April 2023 Living Organ Donor Anniversaries!

« Last post by Clark on April 08, 2023, 09:00:45 AM »

April includes Living Donor Day! Bravo to all of us! Each of the folks we remember each month represents a story of hope in action, a story of potential and dreams, a story of fearful loved ones, and a story of teams of professionals. And these are just the folks who share the occasion with us! The OPTN data report, https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#, indicates there have been 186,116 of us to date!

General success for both donor and recipient, dreams and hopes fulfilled, are the dominant story. Most of us experience exactly that. Have a care for recipients who don’t, donors that don’t, families that don’t. Remember, 90% (very approximately!) of the folks who contact transplant centers to start testing as candidates are rejected. Two million people experiencing a life with such a deep disappointment, an alarming new diagnosis, or deep shame, all lost to tracking by the transplant community and the limited scientific inquiry into the long term adverse impacts of transplantation.

Best wishes, all! Enjoy your day!

Thirty-sixth anniversary:
Andrew Drukker donated a kidney to his sister, Sue, on April 10th, 1987

Thirty-third anniversary:
Chris Tomola donated a kidney to his brother on April 25th, 1990

Thirty-first anniversary:
Tony Fagan donated a kidney to his sister on April 8th, 1992
James D. Breyer donated a kidney to his sister, Susan K. Starcher, on April 22nd, 1992

Twenty-seventh anniversary:
Michalene J Dischinger donated a kidney to his sister, Judith Cleveland, on April 3rd, 1996

Twenty-sixth anniversary:
Dan donated a kidney to his daughter on April 4th, 1997
Barbara Day donated a kidney to her husband on April 9th, 1997
Christine Rowe donated a kidney to her nephew on April 10th, 1997

Twenty-fourth anniversary:
Stacey donated a kidney to her aunt, Cheryl, on April 1st, 1999
Daniel Lasater donated part of his liver to his sister on April 7th, 1999

Twenty-third anniversary:
Brent Jensen donated a kidney to his wife on April 6th, 2000
Rachel Bennett donated a kidney to her sister on April 27th, 2000

Twenty-second anniversary:
Marco Regnier donated a kidney to his cousin on April 11th, 2001
Kimberly Tracy donated a kidney to her nephew on April 12th, 2001
Lisa Clare donated a kidney to her cousin on April 23rd, 2001

Twenty-first anniversary:
Michelle Desler donated a kidney to her brother on April 2nd, 2002
Duchess Freeman donated a kidney to her husband on April 4th, 2002
Carol Bullard donated part of her liver to her sister on April 8th, 2002

Twentieth anniversary:
Michael Weil donated a kidney to his nephew on April 1st, 2003
Timothy A. Kimbirk donated a kidney to his son, Timothy B. Kimbirk, on April 16th, 2003
Father Jim Falsey donated a kidney to a stranger on April 21st, 2003
Dolores Barquera donated a kidney to her daughter on April 24th, 2003
Angela Rennick donated a kidney to her uncle on April 25th, 2003
Michele Walker donated a kidney to her son on April 30th, 2003

Nineteenth anniversary:
Hillary Greene donated lung tissue to an unrelated person on April 7th, 2004
Howard Meyerson donated two lung lobes to his sister on April 7th, 2004
Jeani Vance donated a kidney to her sister on April 16th, 2004

Eighteenth anniversary:
Melissa Breen donated part of her liver to her father on April 5th, 2005

Seventeenth anniversary:
Diane donated a kidney to a stranger on April 6th, 2006
Fernando Torre donated a kidney to his wife on April 26th, 2006
Lisa K. donated a kidney to her brother on April 27th, 2006

Sixteenth anniversary:
Patty Mack donated a kidney to her brother on April 12th, 2007
Peter G donated a kidney to his father on April 12th, 2007
Alexandria Holmes donated a kidney to a friend's mother on April 18th, 2007
Tom Simon donated a kidney to a stranger on April 19th, 2007
Jenny Bokeno donated a kidney to her brother, Darin, on April 23rd, 2007

Fifteenth anniversary:
Brooke Bowen donated a kidney to her cousin on April 16th, 2008

Fourteenth anniversary:
Kristen McLoughlin donated a kidney to a stranger, Cynthia Jacobson, now a friend, on April 15th, 2009
Veronica Rivas donated a kidney to her mother, Esperanza Alcauter, on April 23rd, 2009

Thirteenth anniversary:
Sabrina St-Hilaire donated a kidney to her uncle, Luc, on April 20th, 2010
Patricia Ahearn donated a kidney through a NEPKE 4 way swap to benefit her husband on April 26th, 2010
Dr. Ekta Singh donated a kidney to Rajkumar, her father-in-law, on April 28th, 2010

Twelfth anniversary:
Amy Donohue donated a kidney to Anu (Tiny Mom) Dwivedi on April 19th, 2011

Eleventh anniversary:
Johnny donated in a National Kidney Registry chain to benefit his girlfriend on April 3rd, 2012
Ray Mueller made a non-directed kidney donation April 3rd, 2012, through the National Kidney Registry
Terry McClelland donated a kidney to her sister-in-law on April 3rd, 2012
Michael Green donated a kidney to his friend, Trudy Thompson-Larkins, on April 6th, 2012
Jacqui donated a kidney to her brother on April 19th, 2012
Kris Madden donated a kidney to her cousin on April 19th, 2012
Shelly Pattinson donated a kidney to her brother, Curtis Phillips, on April 19th, 2012
Suzie donated a kidney to her friend, Kevin, on April 19th, 2012
Janice Gildow made a non-directed kidney donation on April 20th, 2012
Stephanie donated a kidney to her Dad on April 24th, 2012. Unfortunately, despite her gift working well, he passed away a month later.
Barbara Altizer donated a kidney to her friend, Nicole Hickey, on April 26th, 2012

Tenth anniversary:
Don Kraemer donated a kidney to a Canadian paired exchange on behalf of his wife, Lori, on April 3rd, 2013
Kevin Bernheisel donated a kidney to William Johnson, his sister's father-in-law, on April 4th, 2013
Laura Davis donated a kidney to her co-worker, Jenny DeLorenzo, on April 4th, 2013
Ashlee Edwards donated a kidney to her cousin on April 10th, 2013
Trudi Fenzel donated a kidney to her sister-in-law on April 11, 2013
Ayushi Datta donated a kidney to her mother, Anuradha, on April 15th, 2013
Ruth Crouch Watson donated a kidney to her 17 year old niece on April 15th, 2013
Jennifer Williams donated a kidney to her Dad, Leon, on April 16th, 2013
Anni Hanson donated a kidney to her friend, Eric Frahm, on April 23rd, 2013
Joseph Hoofnagle donated a kidney to his father, Martin, on March 29th, 2013. Martin passed away one and a half years later.

Ninth anniversary:
Luis Carlos Roblejo donated a kidney to his pastor, Fr. Philip Fabiano, on April 7th, 2014
Becky Cox donated a kidney to her brother, BJ Benton, on April 11th, 2014