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Living Donation Forum / Add Your Story to an Article I am Writing
« Last post by PaulineMilner on February 27, 2024, 04:54:32 PM »
I am a contracted writer for the Saltwire Network covering Atlantic Canada.

My current article assignment is to interview both organ recipients and doctors who perform transplants.

Are you an organ donor recipient?

Would you agree to tell your story for the article?

If you are agreeable, I can send you a short list of questions via email.

You may feel free to use just your first name and last initial or a complete psudenom. Your reason for doing so will not be questioned. If you want to be fully credited for the article that is okay too.

This article is due to be published during organ donor week from April 1st to April 8th.

Your story would definitely help readers better understand the organ donor process and assist others who are waiting for donor organs.

Thank you for your consideration and I hope you will be a part of this very special article.

I am available at your convenience.

Best regards,

Pauline Milner
milnerwriting@gmail.com
Phone 506 639 3738
13
Happy Valentine’s Day! We all have that urge to give love and be loved. May you find love in this life, and love in return!

Happy National Donor Day! National Donor Day was started in 1998 by the Saturn Corporation and its United Auto Workers partners with the support of the U.S. Department of Health and Human Services and many nonprofit health organizations.

Thirty-second anniversary:
Robin Neill Payne donated a kidney to her father, Keith, on February 5th, 1992

Thirty-first anniversary:
Christopher B. Walker donated a kidney to his son, Brandon, on February 5th, 1993

Twenty-ninth anniversary:
Mae Menard donated a kidney to her daughter on February 15th, 1995

Twenty-fifth anniversary:
Pete Whitfield donated a kidney to his brother on February 2nd, 1999
Janet Troiano donated a kidney to her sister on February 17th, 1999

Twenty-third anniversary:
Jeffrey Looman donated a kidney to his step-father on February 18th, 2001

Twenty-second anniversary:
Chris Mason donated a kidney to his father on February 5th, 2002
Lea King donated a kidney to her mother on February 6th, 2002
Linda Bartalot donated a kidney to her mother on February 15th, 2002
Father Patrick Sullivan donated a kidney to a stranger on February 20th, 2002
Lana Schupbach donated a kidney to her mother on February 20th, 2002

Twenty-first anniversary:
Teddie Anderson was a non-directed kidney donor to Janet Grier on February 10th, 2003
Raoul Gomez, Jr., donated part of his liver to his father on February 27th, 2003

Twentieth anniversary:
Rita Kocian, a living kidney donor to her mother in August 2000, died on February 12th, 2004
Joyce Trivett donated a kidney to a friend on February 13th, 2004
Darcie Bjorgo donated a kidney to her mother, Judy Bjorgo, on February 23rd, 2004
Chris Dickenson donated a kidney to her sister on February 24th, 2004
James Muscat donated a kidney to his brother-in-law, David Vella, on February 25th, 2004

Nineteenth anniversary:
Jaime L. Smith donated a kidney to her aunt on February 10th, 2005
Iris M. Saltiel donated a kidney to her sister on February 15th, 2005
Steve Natalie donated a kidney to a friend on February 22nd, 2005
Jeffrey Padilla donated a kidney to his brother-in-law on February 25th, 2005

Eighteenth anniversary:
Patrick Goldon donated a kidney to his sister on February 2nd, 2006
Linda Shaffer donated a kidney to her father on February 15th, 2006
Shannon Irwin donated a kidney to her father on February 20th, 2006
Corry Rausch donated a kidney to her daughter on February 28th, 2006

Seventeenth anniversary:
Audra Burgess donated a kidney to her sister-in-law on February 15th, 2007

Sixteenth anniversary:
Sue Kosiorek donated part of her liver to her brother on February 5th, 2008
Terry Brown donated a kidney to a friend's husband on February 8th, 2008
Sara Anderson donated a kidney to her Dad on February 14th, 2008
Maureen Corcoran donated a kidney to her cousin, Mary Jane DiPaolo, on February 19th, 2008
Karl Smith donated a kidney to his sister, Danica, on February 29, 2008

Fifteenth anniversary:
Nicole Skelly donated a kidney to her friend, Julie, on February 4th, 2009
Carol Stangel donated a kidney to her daughter, Katie, on February 10th, 2009
Wendy Switzer donated a kidney to her hubby on February 18th, 2009

Fourteenth anniversary:
Stacy Rushton donated a kidney to her husband on February 3rd, 2010
Timothy Joyce donated a kidney to his sister, Mary Bridget Collins, on February, 8th, 2010
Ebony Vallance donated a kidney to her Dad on February 9th, 2010
Sandy Benning donated a kidney on February 10th, 2010
Neal Orsbon donated a kidney to his younger sister on February 12th, 2010
Patricia Childers donated a kidney to her brother-in-law, David Elrod, on February 12th, 2010
Ronda Peterson donated a kidney on February 15th, 2010
Todd Welden donated a kidney to Robbie Moore on February 17th, 2010
Cindy donated a kidney to her brother on February 22nd, 2010

Thirteenth anniversary:
Roger Ernest donated a kidney to his daughter's partner, Gary Bourton, on February 8th, 2011

Twelfth anniversary:
Luis G. Rivera donated a kidney to his brother, Ruben A. Rivera, on February 17th, 2012
Faith Bryant donated a kidney to Blaze Pagliarini, a stranger, on February 19th, 2012
Julian Cook donated a kidney to a total stranger, Mary Tompkins, on February 20th, 2012
Morgan Bush donated a kidney to her brother, Scott Briggs, on February 21st, 2012
Lauri Passeri donated a kidney to her friend, Kevin Beam, on February 24th, 2012
Bob Minteer donated a kidney to his friend, Jim, on February 28th, 2012
Jennifer MacIntyre made an unrelated kidney donation on February 28th, 2012
Heather donated a kidney to her older sister on February 29th, 2012

Eleventh anniversary:
Itty Beck donated a kidney to an unknown person on February 12th, 2013
Pauline donated a kidney to her spouse, Ken, on February 13th, 2013
Virginia Compton donated a kidney to her sister-in-law, Pam, on February 18th, 2013
Cori McManemon donated a kidney to Judy Mogel on February 19th, 2013
Mary Beth Wilkinson donated her left kidney to Donald Mark Lindsay, a complete stranger three states away, on February 20th, 2013 in memory of her twin brother who passed away from cancer
Lorie Swanky donated a kidney to her sister, Tammy Swanky, on February 25th, 2013

Tenth anniversary:
Danny Walker donated a kidney to his brother, Jimmy, on February 4th, 2014
Heather Hunt donated a kidney to her sister, Kristin Hunt Wolff, on February 26th, 2014

Ninth anniversary:
Phillip Gay donated a kidney to his daughter, Charlotte Archer Gay, on February 17th, 2015

Eighth anniversary:
Kristin Bramblett donate a kidney to her friend, Keith Kozel, on February 19th, 2016
Micki Stanley donated a kidney to his sister, Patricia Kopp, on February 19th, 2016
Pamela Woodward donated a kidney to her spouse, John, on February 25th, 2016

Seventh anniversary:
Marilyn Hulslander donated a kidney to her husband, Ralph, on February 7th, 2017

Fourth anniversary:
Ruth Esteban-Muir was a non-directed bridge donor on February 19th 2020
14
https://www.organdonation.nhs.uk/get-involved/news/milestone-1-000-people-in-uk-have-donated-a-kidney-to-a-stranger/

Milestone: 1,000 people in UK have donated a kidney to a stranger

NHS Blood and Transplant has announced that more than 1,000 people in the UK have now donated a kidney anonymously to a stranger on the transplant waiting list as a living donor since the law was changed to allow this in 2006. This is known as non-directed altruistic living kidney donation.
Worldwide, kidney disease is the tenth most common cause of death. The number of people developing kidney disease in the UK is growing significantly, driven by risk factors such as diabetes, heart disease and high blood pressure, alongside health and economic inequalities. Despite ongoing work to encourage kidney donation from both living and deceased donors, around six people die each week in the UK waiting for a transplant.
15
https://www.renalandurologynews.com/news/nephrology/transplantation/insights-into-living-kidney-donor-health-racial-disparities/

Insights Into Living Kidney Donor Health, Racial Disparities
Natasha Persaud

Findings from recent studies have characterized the kidney and fracture risks associated with living kidney donation.

Recent studies provide valuable insights into the health of living kidney donors, including their future risk of chronic kidney disease and bone fractures. Research also finds a high willingness to be a living kidney donor in the United States once long-term health, medical bills, and other issues are addressed. Despite efforts to increase living donor transplantation, racial and ethnic disparities remain.

Kidney Function
A small proportion of living donors experience kidney function decline after nephrectomy, a new study finds. In a Canadian cohort of 590 living kidney donors followed for a median 8.6 years, 47 donors (8.0%) had a sustained estimated glomerular filtration rate (eGFR) decline to less than 45 mL/min/1.73m2 or moderate to severe albuminuria, Ngan N. Lam, MD, MSc, of University of Calgary in Alberta, Canada, and colleagues reported in Kidney Medicine.1 The incidence rate was 9.2 per 1000 person-years. The median time to the outcome was 2.9 years, using 1 year after nephrectomy as the baseline.
Each 5 mL/min/1.73m2 lower predonation eGFR was significantly associated with a 26% increased risk of postdonation low eGFR or moderate to severe albuminuria, the investigators reported.
With respect to risk factors, donors had a 2.5- and 4.7-fold increased risk of developing low eGFR or albuminuria after surgery if they had predonation hypertension or postdonation diabetes, respectively.
“Further research is needed to determine whether donors with these risk factors would benefit from more diligent follow-up care as well as the effect of low eGFR and moderate-severe albuminuria on donor morbidity,” according to Dr Lam’s team.
The investigators lacked data on donor race, smoking history, and transplant-related characteristics.
A separate study of 103,938 living kidney donors in the US found that 75% of patients experienced a rise in serum creatinine exceeding 35% after donation.2 The incidence rate was 0.09 person-months. Compared with White donors, Black donors had a significant 22% increased risk of a serum creatinine rise exceeding 35%, whereas Asian donors had a significant 12% decreased risk, Ekamol Tantisattamo, MD, of the University of California Irvine School of Medicine, and colleagues reported at the 2023 ERA Congress. Hispanic and multi-racial patients had no greater risks in adjusted analyses. Older vs younger age did not affect this risk among Hispanic, Asian, and multiracial donors. Investigators gathered and analyzed data from the 1972-2022 Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR) database.
Fracture
Living kidney donors have a theoretical excess risk of bone fractures due to lower kidney mass, lower serum 1,25-dihydroxyvitamin D, and increases in serum parathyroid hormone. In a comparison of survey responses from 2132 living kidney donors and 2014 healthy adults serving as a control group, the overall fracture incidence rate was a significant 11% lower for living kidney donors.3 The rate of vertebral fractures, however, was significantly increased 1.4-fold for living kidney donors compared with healthy adults, Rajiv Kumar, MBBS, of Mayo Clinic in Rochester, Minnesota, and colleagues reported in JAMA Network Open. The risk was higher for men than for women.
“Vertebral fractures would principally reflect deficits in trabecular bone, whereas all fractures, particularly in the axial skeleton, would principally reflect deficits in cortical bone,” Dr Kumar’s team explained.
They concluded, “Treatment of excess vertebral fractures with dietary supplements such as vitamin D3 may reduce the numbers of vertebral fractures and patient morbidity.”
Attitudes Toward Living Kidney Donation
To better understand national attitudes toward living kidney donation in the United States, Amy D. Waterman, PhD, of the J.C. Walter Jr Transplant Center at Houston Methodist Hospital in Texas, and colleagues conducted an online survey in June 2021 of 802 adults aged 25-65 years from the general public.4 Survey questions probed knowledge of living kidney donation and gauged willingness to donate.
Overall, 58.9% and 27.7% of respondents said they might or would consider donating a kidney while still alive, respectively. The vast majority of willing respondents would donate to a family member or close friend. At least half said they also would donate to an acquaintance (60.7%), a stranger with a personal profile (55.2%), or a stranger with no available profile (48.3%). Adults aged 45-54 years were most willing to donate, whereas the oldest adults aged 55-65 years were the least willing.
Barriers to living kidney donation included concern over possible negative health consequences (76.3%), fear of undergoing nephrectomy (72.6%), aversion to any kind of surgery (72.3%), and worries about affording related medical expenses (65.8%).
Transplant-related knowledge, such as kidney-paired donation, increased willingness to donate. Respondents most commonly reported accessibility to a replacement kidney (78.7%); information on the safety of nephrectomy (78.6%); information on health trajectory after donation (76.7%); payment/reimbursement of donation-related medical expenses (76.3%); and transplant success stories (75.2%) as factors that would increase their willingness.
Dr Waterman’s team cited progress in the field, including national efforts to increase federal funding for the National Living Donor Assistance Center, adjust financial thresholds to increase eligibility, reduce insurance discrimination against donors, modify the National Organ Transplant Act to allow government compensation for donors, improve accountability and transparency surrounding organ procurement and transplantation, and solicit public comments on potential improvements.
“These national-level efforts represent opportunities to further progress toward reduced costs for donors and increased rates of living kidney donation,” according to Dr Waterman’s team.
Racial Disparities
More work is clearly needed to improve access to living donor transplantation.
“Equitable access to organ transplantation is a guiding principle of the US organ allocation system,” Vineeta Kumar, MD, a board member of the American Society of Transplantation, said in an interview with Renal & Urology News. “Revisions to the national allocations system have made the rate of deceased donor kidney transplant for Black candidates after listing comparable with that of White candidates. However, Black patients receive living donor kidney transplants less frequently than White patients. Despite higher prevalence of end-stage kidney disease (ESKD), Black patients are less likely to be referred for kidney transplant evaluation and to be waitlisted than White patients.”
In a recent JAMA Network Open study,5 investigators studied 2 race-defined cohorts. Among 394,625 adults on the kidney waitlist, 33.1% were Black and 66.9% were White. Among 57,222 adults who received living donor kidney transplants, 14.1% were Black and 85.9% were White.
From 2008-2018, the racial gap between Black and White adults in living donor kidney transplantation persisted, Lisa M. McElroy, MD, MS, of Duke University School of Medicine in Durham, North Carolina, and colleagues reported. Black adults had a lower yearly median living donor kidney transplantation rate than White adults, ranging from 0.0577 to 0.771 center-years.
“Our findings observed geographic but no temporal variation and suggest that center participation in national programs, such as the paired exchange and voucher programs, may help to mitigate LDKT Black-White race inequities,” Dr McElroy’s team wrote.
In an accompanying editorial,6 Ashley Suah, MD, and Milda R. Saunders, MD, MPH, of the University of Chicago Medicine in Illinois commented, “Transplant centers should increase outreach within minoritized racial and ethnic communities to educate people about kidney health, transplantation, and living donation.”
Low rates of living kidney transplantation among Black Americans is a consequence of individual, interpersonal, and structural inequalities, according to an article in the Journal of Racial and Ethnic Health Disparities.7 Adoption of race-free eGFR equations was a necessary corrective measure. Socioeconomic conditions, poor communication with the provider, and lack of transplant knowledge are some of the remaining barriers.
A study published in the American Journal of Kidney Diseases8 found that Black potential donors are 75% less likely to accept a “medium” risk of kidney failure after living kidney donation compared with White potential donors. The closer the relationship Black potential donors had with the intended recipient, the greater their willingness to accept risk. Transplant professionals have the responsibility to understand a potential donor’s motivations and consider their best interests, according to the study authors.
“Addressing racial disparities in LDKT is a critical, multifaceted issue that demands our continued attention at all levels,” according to Dr Vineeta Kumar.

References:
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https://leadstories.com/hoax-alert/2024/02/fact-check-no-proof-transplanted-organs-transmit-character-traits-from-donor-to-recipient.html

Fact Check: NO Proof Transplanted Organs Transmit Character Traits From Donor To Recipient
by: Ed Payne

Do transplanted organs transmit character traits from the donor to the person receiving them, as a video on social media claims? No, that's not true: Transplant surgeons and a nonprofit for transplant patients told Lead Stories that no scientific evidence or credible research supports the idea that transplanted organs can transmit character traits from the donor to the recipient. Organ transplantation primarily involves the transfer of physiological functions, and any claims about personality traits being transferred lack scientific basis or validation.
The claim appeared in a video (archived here) on YouTube by Tetragrammaton with Rick Rubin on April 28, 2023, under the title "Dr. Jack Kruse and Andrew Huberman, Ph.D (Part 1)." The video's caption begins with:
Dr. Jack Kruse is a neurosurgeon who had an awakening in 2007 when he suffered a torn meniscus in his knee at 6'2", 357 lbs. This led to his further study of physics, light, magnetism, and electricity. He ultimately concluded that modern medicine lacked a deep understanding of how humans function in relation to the natural world.
The video
During a short segment in the nearly four-hour podcast, neurosurgeon and self-described "optimal health educator" Dr. Jack Kruse mentioned that there have been three instances in his medical career when transplant recipients appeared to pick up character traits from an organ donor. He explained one in detail, starting at about 3:16:23 into the show. A condensed transcript of what he said is available below:
I got a young kid -- 18, 19 years old -- his family to donate his organs. And the way it used to work, we would get a letter letting us know where all the organs went to the different people. No data, you know, this HIPAA stuff, but you knew that this person got eyes, this person got a liver and this person got the heart. And they don't give you names ...
So six months later, I get a lady show up to my clinic who doesn't have a neurosurgery problem. She just wants to come talk to me, and the office girl's like, 'We don't know what this is about.'
She comes in and she says: 'Look,' she goes, 'I don't know who to ask. I've asked my primary care doctor, I've asked everybody else.' She goes, 'Ever since I got this heart. I have this intense desire for McDonald's french fries.' ...
And I just sat there stunned. And I didn't know what to say to her. She had no way of knowing this. The data is not out. You can't get this information ... The kid died at a McDonald's drive-thru when a car plowed into him in a T-bone, and they found McDonald's french fries in the seat next to him. He was eating the french fries when the accident occurred. This is a lady who never ate potatoes.
Transplantation experts
In a February 9, 2024, email to Lead Stories, Dr. Joseph Magliocca, director of the Vanderbilt Transplant Center, said, "There are anecdotal reports of people acquiring personality traits of their donor after organ transplantation." He continued:
The phenomenon appears to be seen more frequently with heart transplantation. However, I am not aware of any scientific evidence to support that hypothesis. Since each person's experience is unique to them, it certainly cannot be dismissed entirely but there is no compelling data to suggest that it does indeed happen. We would welcome further study in this area of research.
Dr. Aleem Siddique, a heart and lung transplant surgeon at the University of Nebraska Medical Center, told Lead Stories in a February 8, 2024, email that transplants don't work that way. He said:
Organs cannot transmit character traits from donor to recipient.
In a February 8, 2024, email to Lead Stories, Anne Paschke, a spokesperson for the nonprofit United Network for Organ Sharing, said the donor-to-recipient claim isn't supported by anything she's seen:
I'm not aware of any research into the phenomenon. As far as I know, there are only anecdotal accounts.
Lead Stories looked at three papers (here, here and here) that considered the purported connection between organ transplants and personality changes. While the articles showed some correlation between having an organ transplant and a shift in character traits, none of them provided proof of direct causation between the two.
Dr. Mitchell B. Liester, an assistant clinical professor of psychiatry at the University of Colorado School of Medicine, authored or co-authored two of those papers. He discussed his findings in a series of emails on February 8, 2024, with Lead Stories.
While Liester believes there is "evidence of personality changes following organ transplants," and has had a patient tell him about such an experience following a transplant, Liester also acknowledged that "more studies are needed." He added:
The causal mechanism remains to be determined.
Lead Stories asked if something else might have triggered the observed personality changes, such as the trauma of facing death or potential death, rather than the transplanted organ itself introducing something from the donor to the recipient. Liester replied:
Good question. We need studies to clarify which factors cause the personality changes.
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https://www.physiciansweekly.com/improving-value-delivery-in-living-donor-kidney-transplant-through-process-improvement/

Improving value delivery in living donor kidney transplant through process improvement.
CONTRIBUTORS: Jorge Sanchez Garcia, Chloe Tien, Megan Fife, Brittany Dillon, Sean Dow, Zubair Zafar, Donald Morris, Sanjiv Anand

Living donor kidney evaluation has substantial time variations with significant intercenter variation. One-day donor evaluation has shown to be clinically efficient and improve transplant rates. However, patients’ perception of 1-day evaluation is unknown. We hypothesized that 1 day LKD evaluation will improve patient satisfaction and improve living donation rates.
All interested LD candidates from April 2018 to May 2020 were enrolled in the study. Non-directed donors, donors greater than 60 years old, and recipients with more than three donors underwent multi-day evaluation (control group) while the rest underwent 1-day evaluation (intervention group). An anonymous survey was filled by both groups to assess their perceptions on different areas including time, communication, experience, information provided, and their preferences on living donor evaluation.
Donor candidates in the 1-day evaluation group selected that the time from the questionnaire to clinic evaluation took “under 1 month” or “less than 3 months” (62.5% vs. 15.8%, p = .002), with “excellent” for both scheduling process (65% vs. 31.6%, p = .03) and communication (82.5% vs. 57.9%, p = .09) when compared to candidates in the multiple-days evaluation group. One-day candidates felt “very satisfied” with the overall experience (95% vs. 68.4%, p = .02) and felt “extremely well” with the information provided regarding the living donor process (87.5% vs. 47.4%, p = .003) when compared to multiple-day evaluation group. Regardless of the group, 53 (89.8%) patients preferred 1-day evaluation.
We demonstrate 1-day living donor evaluation is efficient, patient preferred, and adds value through improved communication, and better overall patient satisfaction.
18
Living Donation Forum / Did you donate three or more years ago?
« Last post by Clark on January 30, 2024, 05:06:24 PM »
Are you willing to participate in a study of long term consequences for donors? Email your interest to REACHdonorstudy@chop.edu
I just spoke to the intake coordinator, Isabelle. I hope you’ll join me!
19
Living Donation in the News / Organ Transplantation Developing in Kyrgyzstan
« Last post by Clark on January 18, 2024, 11:53:44 AM »
https://timesca.com/organ-transplantation-developing-in-kyrgyzstan/

Organ Transplantation Developing in Kyrgyzstan
Kyrgyz President Sadyr Japarov has signed a law on the protection of citizens’ health, according to which private and state clinics can now transplant internal organs, but on one condition.
On the instructions of the President, while considering the draft law “On Protection of Citizens’ Health in the Kyrgyz Republic,” the Parliament of the Republic considered additional norms that provide for the removal of organs from a living donor, but only if the donor “is genetically related to the recipient.” According to the law, a genetic link is defined as a relationship between persons who share common ancestors up to great-grandparents.
Despite the fact that this law has not yet entered into force, last week Kyrgyz Health Minister, Alymkadyr Beishenaliev traveled to Turkey, where, according to the press center of the Ministry of Health of the Kyrgyz Republic, he took part in a liver transplant operation. He also discussed the development of bilateral Kyrgyz-Turkish cooperation on liver and bone marrow transplantation in Kyrgyzstan with the rector of the Turkish university where the operation took place. It had earlier been agreed between the presidents of the two countries agreed that Turkey will help Kyrgyzstan in this matter.
“Sadyr Japarov has set a task on the need to solve the issue of liver and bone marrow transplantation in Kyrgyzstan in a short period of time, which has not been solved for many years,” Beishenaliyev said. In turn, his Turkish counterpart noted that Turkey is ready to help Kyrgyzstan organize the work of the transplantology department, train specialists, and conduct joint operations in Bishkek on liver and bone marrow transplantations.
Liver transplant operations have been carried out in Kyrgyzstan before, with Kyrgyz doctors being assisted by colleagues from Belarus, Russia, and Turkey. Since 2016, Kyrgyz doctors have performed around fifty kidney transplant operations.
However, the law on organ transplantation which was adopted in 2001 is outdated. Kyrgyz doctors prepared additions to it, in particular on organ donation and the transplantation of bone marrow, kidneys and liver, but for about five years, the issue has stagnated. It was only in August 2023 that, for the first time, Kyrgyz doctors conducted a successful kidney transplant unaided.
In addition, equipment has now been purchased to analyze the compatibility of donor organs. Previously, patients had to travel to neighboring countries to find out if they were compatible with the donor.
If liver transplants start to be performed in Kyrgyzstan on a permanent basis, the operation will cost about $10,000. Abroad, such an operation costs $50-60,000.

[N.B.: These cost estimates for liver transplant surgery are as much as 20 times too low for US costs.]
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https://www.congress.gov/118/plaws/publ14/PLAW-118publ14.pdf

  T[size=78%]he ‘‘Securing the U.S. Organ Procurement and Transplantation Network Act’’ is law.[/size]
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