▶ 0:15:24We have to have our priorities.
▶ 0:15:27How are you doing?
▶ 0:15:30Doing great.
▶ 0:15:35Um, good morning and welcome to today's oversight hearing. Um first I want to extended thank you for everyone who is participating particularly our witnesses. I appreciate you being here. Um I want to begin by recognizing the work of those in the organ procurement world and say look it's vital work but our job here is to understand we actually started last April um sending out requests for information
▶ 0:16:06and with the investigation we've had some very sometimes uncomfortable bits of information come in each organ procurement organization is certified by CMS and operates exclusively within a designated service area, giving it unique and highly consequential roles in that community.
▶ 0:16:29These organizations provide life-saving services to thousands of Americans, but that mission does not place them above Um, following the committee's April request for information, we received responses from several whistleblowers across the country.
▶ 0:16:50In reading the testimony that's come to us, we're trying to understand where the fragility is. And and I'm off script, but this is someone who spent part of their weekend reading these things. Is some of it at the hospital [clears throat] level? Is some of it at the advocacy level? Is it at the procurement organization level? Is it at the CMS level?
▶ 0:17:17help us understand and help us also understand where we need to extend our But ultimately for all of us up here, we want to fix things. Is it ultimately coming to a new scoring system? Um, we've been trying to read about the differentials between lung procurement and kidney and some of the different scoring models that are used for that procurement and placement.
▶ 0:17:46Um, help us understand what where we should take this. Um, look, we look forward to the testimony from our witnesses and I will actually ask my questions at the very end. Um but between now and then, give us the tools, give us your stories, help us understand. And with that, ranking members will.
▶ 0:18:13Good morning, everyone. I join uh in Chairman Schwikert's uh in convening this very important hearing on accountability within the Oregon Procurement Organizations or OPMS. This is not a partisan issue. It is not an abstract policy debate. This is about the life and death of more than 100,000 Americans who are waiting for a transfer, a transplant right now.
▶ 0:18:38For years, independent reviews, including federal audits and government accountability office reports and HHS inspector general investigations, have warned us that America's Oregon procurement system is underperforming to say the least. So, some OPMs do extraordinary work. Others lag far behind with low recovery rates, poor management practices, and preventable laps that could have saved lives. These failures are not theoretical.
▶ 0:19:07They have led to organs not being recovered because OPMS do not show up to hospitals in time or lack trained personnel, breakdowns in testing, documentation irregularities, and the list goes on and on. These systemic failures are sometimes described as organ procurement crisis. It is a crisis rooted in bad but it's not bad actors alone.
▶ 0:19:32I believe that it is also a result of an outdated accountability structure that we in Congress could do something about. I come from Alabama, a and I represent families who give and families who grieve. I believe that there are uh three simple principles for this hearing. Transparency, accountability, and equity. When those principles are missing from organ procurement and autopsy practices, trust is broken and lives are harmed.
▶ 0:20:02There are several reported cases and lawsuits out in Alabama that illustrate why this committee hearing today is so important. Families of people who died when incarcerated in Alabama have reported receiving loved ones bodies with internal organs missing and have filed civil lawsuits alleging that these uh organs were retained or used without consent. Multiple news reports and national outlets have documented these families complaint.
▶ 0:20:31These families have demanded answers and criminal investigations from the state uh officials and they look to Congress to try to do something about it as well. It is also important to place Alabama's cases in a national context. Uh in recent years uh bipartisan Senate and House inquiries uh as well as CMS and HERSA reviews have documented systemic accountability issues and gaps. I believe that we must do more than just talk. We must do something about it.
▶ 0:21:01OPMs hold a unique position. They are federally designated monopolies, if you will, taxexempt organizations entrusted with responsibility that no one else can perform. Congress has a duty to ensure that public trust is deserved and not assumed. We must be provide vigilant oversight and implement reforms that will strengthen performance, modernize oversight, and protect patients and their families. I want to stress that this is uh not a partisan uh conversation.
▶ 0:21:30Both Democrats and Republicans have expressed deep concern about the failures within OPM within the OPM system. Administrations from both parties have proposed uh reforms, issued updated regulations and called for greater accountability. And we must do both. I also want to highlight and hope that we will talk about the disparities that exist in organ procurement. Black Americans are three times more likely to suffer from kidney failure.
▶ 0:21:56Yet, they wait longer for placement on transplant uh on transplant list and are less likely to receive a transplant. Communities of color face delayed referrals, lower access to transplant centers, and inconsistent communication from OPM OPMS. Equity must be center to ensure that we actually get it right. No community should be left behind simply because of where they live, how their hospital is resourced, or the color of their skin.
▶ 0:22:23Now, we must also recognize that all of these these failures are happening in a time when my Republican colleagues have passed a bill that has gone to weaken Medicaid and Medicare and caused millions to lose and reduce their insurance. Um the bill that was passed in July created new barriers for patient uh seeking timely organ failure treatment and transplant referrals. Organ transportation does not happen in isolation. It depends upon a stable coverage.
▶ 0:22:54Stable coverage, chronic care management, and early detection. All of which become harder when patients lose access to affordable health care. Any policy that increases the ranks of uninsured inevitably worsens the transplant outcomes. Um, in conclusion, accountability for OPMs is not optional. I believe it's essential. Lives depend upon us getting this right. Today, as we hear from witnesses and examine the failures of the current system, I hope that we keep one thing in mind.
▶ 0:23:23Every improvement we make has the potential to save a life, to shorten a family's grief, and to honor the generosity of donors who whose final act is a gift of hope. Let us work together, Republicans and Democrats, to ensure that America's organ procurement system finally meets the standards our patients deserve. And with that, I yel back.
▶ 0:23:43Thank you, Miss. Um, now we're going to introduce our witnesses. Um, Heather Knuckles. Knuckles. All right. A citizen of Missouri and Chairman Smith's constituent who's here to tell us the story of her mother's organ transplant.
▶ 0:24:02Um, Nikki Martin, a former OPO employee, Jennifer Ericson, senior fellow for organ donation policy, Federation of American Scientists. You want to introduce yours? uh Emily, sorry, Emily G, who is a senior vice president for economic policy and senior fellow for health policy at the Center for American Progress. Welcome everyone.
▶ 0:24:31Miss Knuckles and to everyone, you have five minutes. Um, your written testimony will become part of the permanent record. Um,
▶ 0:24:43good morning, Chairman Smith, Chairman Schwiger, Ranking Member Su, members of Congress or me members of the oversight subcommittee. My name is Heather Hollis Knuckles of Imperial, Missouri, and I'm here today to discuss my mother's fatal liver and kidney transplant in 2022. 7 years ago, my mother was diagnosed with fatty liver disease, which evolved into cerosis. In November of 2021, as the cerosis advanced, my mother became bedridden while my husband and I provided daily intensive care.
▶ 0:25:10By mid 2022, her kidneys were failing and she was placed in a nursing facility awaiting a healthy donor liver and kidney. Our prayers were answered on October 29th, 2022 when a donor match was found. Coincidentally, this was my wedding day, and I remember my mother smiling at me and saying, "I'm so glad I'll get to be a part of your life going forward. I can't wait to be a mother-in-law.
▶ 0:25:34She held my hand, looked me in the eyes, said, "I really hope this goes okay because I wouldn't want to die or anything." We reassured her it would go well and her new life would begin. It was the happiest day of our lives. Little did we know the nightmare was just beginning. On October 30th, 2022, my mother underwent the liver and kidney transplant at Barnes Hospital in St. Louis with organs procured by Mid America Transplant.
▶ 0:26:01The day following surgery, she was happy, alert, and couldn't wait to be home to see her pets, family, and friends. On November 3rd, transplant surgeons informed us that the donor liver contained high-grade metastatic cancer that was not reported on the donor records from UNOS, but was discovered by the transplant hospital Barnes after transplant procedure was completed. We were informed this was a very deadly form of cancer and if it were to spread she wouldn't be eligible for treatment. Our dreams were shattered.
▶ 0:26:29Fear and sadness washed over my mother's face. She was relisted for transplant. Surgeons did decided to not replace the donor kidney even though its condition condition was questionable due to a large cyst at the time of transplant. My mother underwent a second liver transplant on November 8th, 2022. She was extremely fragile afterwards, hallucinated for days, and suffered delirium. Occasionally, her wrists were restrained for safety.
▶ 0:26:56This was By late November, she was transferred to the St. Louis Rehab Institute and she remained unable to walk and was jaundest. Test revealed the donor kidney had a blockage and was dysfunctional. Two attempts to insert stances in the donor kidney failed and it would only survive with an aphrosttomy bag. On December 16th, my mother was readmitted to Barnes Hospital, placed on a feeding tube with a nasogastric tube that removed bloody gastric acid.
▶ 0:27:24She was developing a large solid mass on her lower abdomen. She became emaciated, failed to absorb her tube feeding and required the hospital to pivot to an IV feeding. She was communicative, but could only whisper, and had trouble holding her eyes open. We never received an explanation for her rapid decline. My father and my husband and I both reached out to transplant team seeking answers. One recommendation from the liver team administration was to have hope and prayer while my mother unbeknownst to us lay dying.
▶ 0:27:56Please bear in mind my mother's body never rejected the organs. On January 9th, 2023, my mother was transferred to the ICU and placed on life support. The next day, the transplant surgeon informed my father and I based on the appearance of a CT scan and fluid testing, the liver was cancerous. This confirmed the doctor's earlier suspicion that the cancer was transplanted from the first liver.
▶ 0:28:21Friends and family stayed at my mother's bedside daily, and per her living will, my father made the gut-wrenching decision to remove my mother from life support Friday, January 13, 2023. We said our final goodbyes and she passed at 5:40 p.m. Per UNOS records, the donor was hospitalized and placed on life support for six days. A CT was performed. However, no cancer cells or no abnormalities were perfored per reported.
▶ 0:28:48The radiologist report states conventional hippatic arterial anatomy. No liver surface nodularity or steattosis. Five days postrplant, Barnes pathology revealed the deadly cancer that killed my mother two and a half months later. Barnes pathology notes state metastatic poorly differentiated adino carcinoma involving donor gallbladder present as scattered subcerosal tumor and prominent intravascular deposits favor metastic gastric adino carcinoma.
▶ 0:29:19On one hand, UNOS considers the donor eligible. Yet five days later, Barnes pathology reveals high-grade metastatic Following the passing of my mother, we suffered nearly three years as this horrific ordeal was ignored. And if OPOS's are not held accountable when situations like this occur, they won't feel compelled to implement enhanced safety standards or procedures for organ recipients. No one should ever have to experience what my mother and our family has endured. It is time for the entities responsible to be addressed.
▶ 0:29:49My request to this committee is to use the levers within your jurisdiction to address the importance of donor screening. prior to transplant. As a recipient, my mother had to undergo rigorous testing, even checking for cavities prior to becoming eligible for transplant. Yet, the donor, who we now know had cancer, was somehow eligible for harvesting, and this does not make sense. Chairman Smith, Chairman Schwikert, Ranking Member Su, members of the committee, I thank you for your time, and vested interest in my mother's horrific transplant case.
▶ 0:30:18I'm willing to answer any and all questions you may Good morning, Chairman Smith, Ranking Member Neil, Chairman Schwiker, and Ranking Member Su, members of the subcommittee. Thank you for the essential work your committee is undertaking to bring transparency to the corruption, dangers, and systemic deception embedded in the organ procurement industry. I previously worked as a surgical preservationist in an OPO.
▶ 0:30:45My role there was to assist in the safe recovery and preservation of life-saving organs for transplant. From my firsthand experience, it appeared that my former employer was exploiting a l a regulatory loophole to advance its metrics and increase Medicare reimbursements at the expense of organ donors in their families who I believed were being misled and taken advantage In 2021, TJ Hoover was brought to the hospital in cardiac arrest. As a registered organ donor, his family agreed to honor his wishes.
▶ 0:31:14TJ had remained unresponsive for several days, regaining consciousness during his cardiac caization. Immediately upon waking, he was paralyzed and sedated. Hospital staff described the situation as inhumane and akin to human euthanasia. The cardiologist present advised TJ should have never been given a grave prognosis with no meaningful recovery given his reflexes present.
▶ 0:31:36Despite being alerted to these concerns, the OP staff returned TJ to the ICU without performing the required neurological exam that should have been repeated. Even more alarming, and to the best of my knowledge, the family was never informed that TJ had regained consciousness and had shown meaningful emotion and purposeful movement. Under my former employer's own protocol at that time, the case should have been halted immediately once neurological function improved. The failure to do so represents a profound breach of medical standards and ethical responsibility.
▶ 0:32:08Following TJ's case, an organ operations manager convened a staff debriefing. It quickly became clear that my former employer was attempting to contain the situation. Despite multiple staff urging reporting the case to appropriate authorities, we were told the OPO would handle it internally. Our access to TJ's medical records were restricted. We were This experience resonated when I read this committee's letter to the New Jersey Sharing Network. The parallels between those whistleblower allegations and my own are unmistakable.
▶ 0:32:38Patterns of concerning organ recovery practices document destruction and retaliation against those reporting legitimate concerns, highlighting systemic failures that demand urgent accountability and reform. After I came forward as a whistleblower, the Health Resources and Services Administration launched an investigation into my former employer. In just 89 days, there were 103 cases in which the organ donation process was initiated in error.
▶ 0:33:04What is even more frightening is that the investigation only examined cases in which the patient survived. We have no way of knowing how many times organs may have been recovered from patients who would have otherwise lived. The scope of this risk is staggering and underscores a systemic failure that cannot be ignored any longer. This OPO's mission under their current leadership is described as one focused on restoring public trust, enforcing ethical and medical standards, and prioritizing donor and patient safety over metrics.
▶ 0:33:33As far as I'm aware, the administrative leaders involved in the decision surrounding TJ's case are still serving in leadership roles at that very OPO. The organization overseeing donation has not admitted wrongdoing, nor has it shown any compassion, remorse, or any commitment to real change. This lack of accountability is precisely why organ donation in some states remains unsafe. The pursuit of metrics can never supersede the fundamental mission of saving lives through transplantation.
▶ 0:34:01Nor can it justify misleading the families who are already in the depths of grief and counting on their loved ones donation to make a difference. OPOS's must be held accountable for wrongdoing so that Americans can can trust the organ donation is safe, ethical, and worthy of their generosity. I urge this committee to do all that it can to continue its investigations into opios and toos. I believe in organ donation and I've devoted much of my life to it.
▶ 0:34:26I am now pleading with Congress to do everything in its power to make this process safe by working with HHS, CMS, and HERSA to identify and replace dangerous actors and to pro protect our most vulnerable patients. Chairman Smith, Ranking Member Neil, Subcommittee Chairman Schwikert, and subcommittee ranking member Su and members of the committee.
▶ 0:34:51Thank you for shining a light on this public health crisis that is leading to unnecessary deaths every day across the United States. The failures of the federal government's own organ contractors. I am testifying today in honor of my father, Commander Donald Ericson of the United States Navy. My father died of organ failure, the result of his military service in Vietnam. Chemical exposure claimed three of his organs 40 years after the war ended, and I was one of his caretakers.
▶ 0:35:18To sit next to a loved one through surgeries and hospitalizations and to hold their hand through their final days is to know the true cost of the Oregon waiting list. These are grueling deaths and knowing that most of them are unnecessary is what drove me to work with anyone willing to engage on reforms across the most recent four administrations and with four congressional committee Investigations have exposed that the harms fall not only to patients on the waiting list, but also to Americans who are in ICUs because there's been a tragic accident, overdose, or other
▶ 0:35:48event that means they're being approached by organ procurement organizations, OPOS, and asked to say yes to organ donation. Americans are generous and overwhelmingly supportive of organ donation, but as explosive whistleblower accounts and investigative reporting have laid bare, many OPOS are abusing this sacred trust. We are in the midst of a national organ harvesting crisis and corruption at OPOS is the problem.
▶ 0:36:13Taxpayer funded OPOS operate with virtually no accountability and opios have pressured grieving families and in the most horrifying cases targeted patients who aren't even dead. Whistleblowers have shared they've been trained to target inexperienced physicians, especially in rural America and hospitals where doctors haven't seen these types of cases in an effort to destabilize patients through the overadministering of comfort meds such as fentanyl. This summer, the longest serving transplant coordinator, Charles Bearden, passed away.
▶ 0:36:43And before he died, he shared at some points in his career, he literally covered a patient with his own body to stop dangerous opos from harming patients who could otherwise survive. Members of Congress have described the findings as something from a horror movie, and they are not wrong. The line between organ donation and organ harvesting is consent. No family would consent to a loved one being wheeled into an O to have their organs removed when they could survive. Yet, that's what's happening across the country.
▶ 0:37:12Hersa outlined rampant abuse from Network for Hope, the OPO operating in Kentucky, Ohio, Indiana, and West Virginia. And this committee issued a damning oversight letter informed by nearly a dozen whistleblowers, writing that activities performed by New Jersey Sharing Network amount to not only extreme abuse of public trust, but also potential violations of law. The details are chilling.
▶ 0:37:36A patient who'd been declared deceased reanimated, and according to information obtained by this committee, the CEO told staff on site they should proceed with recovery. Several whistleblowers alleged documentation regarding the case was deleted or otherwise manipulated. Congressional investigations have shown outofsequence organ allocation, coercion, and obtaining consent and patient abuse. Additionally, the committee has started investigating the misuse of jets and other uses of taxpayer funds.
▶ 0:38:04And I am grateful that this committee is following the money in this multi-billion dollar industry. IRS90s show ops have transferred more than half a billion dollars to related organization where uses of taxpayer funds get pushed even further into the shadows. Multiple OPOS have financial interest in tissue processing companies including ones who do business internationally and in the Middle East, raising even more questions about who is getting rich off the backs of generous Americans. I believe in Oregon donation.
▶ 0:38:35There are ops that do the job with integrity and many brave frontline workers who sounded the alarm only to have been silenced and retaliated against when they tried to protect patients. The need for action is urgent. We can no longer expect the American people to blindly trust contractors who endanger their lives. And the fixes are as apparent as the problems are abhorrent.
▶ 0:38:57Any OPO who has abused the public trust through harming patients, misleading families, or misusing tax status or tax dollars must be immediately replaced and prosecuted to the fullest extent of the law. The Trump administration responding to bipartisan calls from Congress showed its willingness to act by replacing the OPO in South Florida. I hope this investigation with its extensive documentation and whistleblower accounts can help Congress and the administration take similar actions to replace Network for Hope.
▶ 0:39:27And if allegations are proven true, New Jersey Sharing Network along with any other OPO that endangers patients. For anyone watching this hearing, the safety of your family may depend on the continued investigation of this committee and the actions of the administration to replace dangerous contractors before you or a loved one is ever in a hospital room with a corrupt or negligent OPO approaching. Good morning.
▶ 0:39:54Thank you, Chairman Smith, Ranking Member Neil, uh, Chairman Schwikert, and Ranking Member Su, and members of subcommittee for inviting me to testify today about the need for stronger bipartisan oversight of organ procurement in the United States and about how comprehensive health coverage is essential to well functioning health care system. Above all, I want to thank the subcommittee for investigating the degree of abuse, fraud, and waste in the US organ donation system.
▶ 0:40:21I hope that recent alarming incidents reported in the press, findings by the HHS Inspector General, and the evidence discussed at this hearing will spur Congress to demand tighter oversight of organ procurement organizations. However, I also want to note there is no need for HHS to wait for congressional intervention. The Centers for Medicare and Medicaid Services is already responsible for certifying opios.
▶ 0:40:45CMS has the authority to terminate an agreement with an OPO that no longer meets the requirements of certifi certification as it did in September for the OPOS serving South Florida. HHS, CMS, and HERSA have a responsibility to ensure that OPN and the OPOS's are acting in the public interest and OPOS's must be held accountable for the well-being of putting the well-being of patients first and for being responsible stewards of taxpayer funding.
▶ 0:41:13But at the same time, other threats to Americans health are looming. As a consequence of the policy choices made by this Congress, about 14 million more Americans will be uninsured by 2034. The so-called big beautiful bill slashed federal healthcare funding by $1 trillion over the next decade. Evidence from Medicaid coverage expansions demonstrates that health insurance is important for health and other outcomes.
▶ 0:41:39Having health insurance is associated with a decreased likelihood of unmet medical needs, greater use of preventive and primary care, improvement in financial well-being, and reduced medical debt, and lower probability of eviction. Beyond causing millions to lose coverage, Medicaid cuts will squeeze state budgets and strain hospitals and other health care providers around the country. Hospitals will be left to cover the costs in the form of uncompensated care.
▶ 0:42:04Before the law's passage, over 300 rural hospitals in the United States were already at immediate risk of closing due to their financial conditions. In addition, this Congress has turned down multiple opportunities to extend the expiring financial help for people who buy coverage on their own. The enhanced premium tax credits for ACA marketplace plans expire on December 31st. Consequently, the average premium payment among the more than 20 million people who receive subsidies is set to more than double for 2026.
▶ 0:42:33It is not too late for Congress to improve affordability if it can find the will to do so. Comprehensive health coverage is important for access to organ transplants. The affordable care acts coverage expansions have generated broad-based gains in health insurance coverage. As of 2024, the insurance rate for the total population was about 8%. The number of organ transplants has also been trending upward. Notably, the increasing number of listings suggests that gains in health coverage may be providing patients with options they otherwise would not have had.
▶ 0:43:04One study found that Medicaid insured weight list registrations and deceased donor transplants had increased in states with Medicaid expansion. Americans who lose coverage may have difficult greater difficulty being listed for transplants. It is rare for transplant recipients to be uninsured in part because patients may qualify for special coverage. Another major reason is that transplant centers typically weigh both medical and non-medical factors in evaluating candidates for transplantation.
▶ 0:43:31Wouldbe recipients have been refused transplants because of lack of insurance or shaky finances beyond cost and proximity to the procedure. Health coverage is vital to transplants recipients transplant recipients access to follow-up care, care for complications and lifelong imunosuppressent drugs. If proposals under discussion in Congress are implemented, the health coverage landscape could turn far worse. Specifically, policy changes under discussion would harm people with pre-existing conditions.
▶ 0:43:59Some lawmakers have suggested pushing enrolles into lower value plans with higher deductibles, replacing comprehensive coverage with health savings accounts or relegating the sick to high- risk pools. That would be a grave mistake. The very point of health insurance is to pull risk broadly, giving people financial protection against catastrophically high medical bills. The ACA's rules are critical to ensuring a functional market for affordable, comprehensive health insurance for all Americans, including people with organ failure.
▶ 0:44:28The health of all Americans depends on affordable, comprehensive access to insurance. Thank you. I look forward to your questions.
▶ 0:44:38Chairman Smith, first question. Thank you, Chairman Schweikert. Um, as someone who has a family member that was a recipient of a heart transplant just in the last few months, I I personally um appreciate this committee's ongoing work regarding OPOS's. Um, it is so incredibly important that Americans have trust, that they have trust in our nation's organ procurement process.
▶ 0:45:09that is the only way that we can ensure that folks will continue to donate. Um, news of misdeeds or a growing lack of faith in opios can suppress participation in the system and hurt those who need these lifesaving transplants.
▶ 0:45:29There was more than 48,000 48,000 people who had an opportunity to extend their life through donations last year alone. Miss Knuckles, I am I'm grateful to to have a native of Missouri from God's country, as I refer to it, um testifying before our committee. But I'm deeply saddened about why you're here.
▶ 0:45:57Um the story of your mother's um liver transplant is absolutely shocking and heart-wrenching and a clear example of the breakdown in the standards of health care that your family and every family should be able to expect.
▶ 0:46:15Without asking you to to once again recount or relive the details of your family's terrible experience, I'm curious to know, has the taxexempt Midame America transplant acknowledged the horrific failures that occurred with your mother?
▶ 0:46:38not at all.
▶ 0:46:39No, not at all. Is there anything that the committee can do to ensure that what happened to your mother doesn't happen to anyone else?
▶ 0:46:51Yes. Yes. Um please consider legislation ensuring that donors receive the most rigorous screening possible prior to organ harvesting. Recipients like my mother have to undergo multiple tests to ensure eligibility to receive donated organs. Other than needing the liver and kidney, my mother was healthy and cancer-free. In the meantime, the donor, who was on life support for nearly a week, had aggressive cancer that was not reportedly not detected on a CT scan.
▶ 0:47:19That was plenty of time for thorough testing to occur. I respectfully request an investigation into my mother's case and other cases so that lessons may be learned to help ensure this horror never occurs with any other recipient or other family. Thank you.
▶ 0:47:38As part of this committee's ongoing investigation into taxexempt OPOS, we learned about troubling allegations regarding Life Alliance Organ Recovery Center in Miami. We voiced our concerns about the Medicare fraud in a letter to that to that organization demanding additional information and in turn the Trump administration moved to descertify them.
▶ 0:48:06Um, after speaking to what is now over a dozen dozen different whistleblowers, the committee recently learned of troubling allegations from another OPO, New Jersey Sharing Network. Miss Eric um, based on your experience, what impact will congressional oversight have on bad actors in the OPO space?
▶ 0:48:32The Trump administration has showed that it's listening to these congressional investigations on this issue. And I hope that based on HERSA's findings and your ongoing investigation that CMS and HHS will take immediate action and replace the dangerous Kentucky-based OPO network for hope. And if allegations from these dozen whistle blowers are proven true, they should take the same action and immediately replace New Jersey Sharing Network.
▶ 0:48:58If calling out the misdeeds of these OPOS is step one, step two is reforming the system so that it is safe, it's accountable to patients and taxpayers, and it's trusted.
▶ 0:49:12Miss Martin, this committee has already begun thinking through policy options that clarify the OPO certification process, implement penalties for violating CMS regulations, and ensure that OPO data belongs to CMS so agencies can have better better insight into OPO behavior.
▶ 0:49:35In addition to giving regulators better tools and implementing a clarified process of of certification and what sort of reforms would would further improve ops so folks are willing to donate and participate freely in the
▶ 0:50:00Honestly, I think right now all eyes are on Kentucky. um as a Kentucky citizen and still working in the health care system. Many people have come to me and have said, "What are we doing about this? What's going to happen to Network for Hope? Where's the accountability?" So, I think this has to start from regaining public trust.
▶ 0:50:17And the only way to do that is to have transparency and accountability and for Congress to continue working with other legislative bodies and law enforcement specifically to make sure that these people are taken taking accountability for what they've done so that it doesn't happen in the future. And then we can show the public, you know, we we see the problems. We're working on them. Um, the public should have more informed consent. They should truly understand what they're signing up for when they sign up to be an organ donor because organ donation is so important and we need it so badly.
▶ 0:50:45Thousands of people are dying, but also thousands of people are taking their name off the organ donation registry. So, we have to fix that.
▶ 0:50:53Thank you all so much for um being here on such a important topic. Thank you, Mr. Chairman. I'm breaking members.
▶ 0:51:01Well, first of all, thank you so much for sharing your stories. Um, I hope you know that we up here do take very seriously our oversight responsibility and as the chairman said, we have been uh very much involved in trying to make sure that we're uh sounding the alarm for some of the bad act actors that are going on. Um, more than a 100,000 Americans are languishing on organ um weight list. In Alabama, we've seen the problem up close.
▶ 0:51:29Um, last year, it's a disturbing report that I talked about in my opening remarks about incarcerated people having their organs removed without the consent uh their consent or their family's consent. And this summer, the New York Times wrote a chilling uh account of a young Alabama woman whose heart was still beating when the organ procurement surgery began.
▶ 0:51:53Uh, Health Secretary Kennedy has promised to remove dangerous OPOS and to replace them with others. Um, but Miss uh, Ericson, can you uh, tell this committee what we can do to ensure that patients are safe?
▶ 0:52:10Thank you, Ranking Member Su. It's absolutely critical that Congress keeps going with its investigation. You're right. This is a nonpartisan issue and affects people across the country. And Miss Martin is right. All eyes are on Kentucky. Congress can urge the health secretary to follow through on his promise and remove known dangerous opios such as Network for Hope and New Jersey Sharing Network based on these allegations have proven.
▶ 0:52:36Dr. J, um you so eloquently talked about why access to affordable health care is critically important. Um can you talk a little bit more about um why it's so important that we extend these um the tax uh subsidies in order to make sure that the 20 plus million Americans continue to have health insurance coverage and how that impacts Oregon
▶ 0:53:03because of the uh big beautiful bill. In addition to uh the expiration of the enhanced premium tax credits at the end of this year, about 14 million more people will be uninsured by 2034. Um in particular, the tax credit extension um will cause about 20 million people who receive subsidies to the uh ACA marketplaces to see their premiums more than double on average. Um and unless Congress extends those subsidies, they'll expire at the end of this year.
▶ 0:53:32That affects everybody who has coverage the marketplaces regardless of whether whether they have subsidies because uh when the cost of insurance goes up, people who are younger or healthier um tend to go without insurance which makes costs more expensive for everybody else. Um insurance is a requirement uh for transplant. Many transplant centers across the country uh because transplant centers choose to give donated organs uh to the patients where they'll have the greatest chance of success. Great.
▶ 0:54:02Uh, Miss Martin, you worked at an OPO. Uh, and so can you tell us what reform, if you could just single out one type of reform that would actually make a difference in saving the lives, uh, and also encouraging um, this amazing gift of life that people are giving. Um I think that we have the trust has been eroded as you have said and and so um what is uh if you could just have a single reform what would that reform be?
▶ 0:54:32Um I think most importantly that right right now a lot of people feel like uh OPOS are kind of like vultures for a lack of a better term. I feel like families are pressured. They're not included in their loved ones care or decision making. I feel like making a transparent um informed consent process would be appropriate and allowing the families to have more of a role in making these decisions and being supported better while they're making those decisions for their loved ones.
▶ 0:54:58I feel like that would help to improve public trust and then again also holding these people accountable. The dangerous OPOS need to be taken, you know, out out of the process.
▶ 0:55:07Yeah. Well, um the horrific um tales of the incarcerated people in Alabama and what happened to those families is just outrageous. Mr. Chairman, I'd like to enter into the record an al an al.com article entitled another case over organs missing from prisoners in Alabama to go forward nothing short of robbery.
▶ 0:55:30Thank you. I think it's important that all of you know that this is truly a a bipartisan issue and that we must get to the bottom of this in order to make sure that there's transparency and accountability uh in the Oregon procurement um industry. And um I make a commitment to work with my uh colleagues across the aisle to do something about that. And we will keep our eyes on what's going on in Alabama and make sure that that that my state uh does what it needs to do.
▶ 0:55:56But I think it's critically important that um that HHS use its uh authorities to actually get rid of bad actors and do so. Um having said that, I yield back the balance of my time.
▶ 0:56:08Thank you. Um uh pursuant to committee practice, we're going to go to two to one. And Mr. Bean, you have five
▶ 0:56:15Mr. Chairman, thank you very much. And good a or good morning ways and means uh oversight uh panelist. I am truly sorry you come under the circumstances of which you come. I'm a member of the oversight committee. I'm a member of Congress. I'm a me member of Ways and Means. And I'm used to reading about waste, fraud, and abuse. It's rampant throughout the federal government. But today, there's two words I'm going to add to it. in reading for preparation for today's hearing. It's shocking. It is shocking.
▶ 0:56:44And I'm so glad the cameras are watching. I know C-SPAN is watching. America will be shocked when they find out what's happening bei behind these organ uh these this just the way that we uh harvest organs and give organs to families and breaking hearts. Miss Knuckles, Miss Martin, I'm I'm truly sorry. And it is shocking. It's also, I'm going to use a word you don't hear very often. It's evil.
▶ 0:57:09It's evil to to rob families of the hope uh to mislead them, to take organs before before any organ should be taken. I'm really sorry. So, I've got a picture behind me and I want to ask Miss can you explain what I'm looking at with this picture behind me, Miss Ericson?
▶ 0:57:34Yes, Congressman. According to a whistleblower, those are boxes of human organs that are sitting on shelves, including human pancreases.
▶ 0:57:42So, pancreas. Now, shouldn't if you if you donate a pancreas, shouldn't they go directly towards somebody in need of a
▶ 0:57:50Yes, sir. That's what families agree to.
▶ 0:57:53Uh, so why aren't they going? In fact, I know why they're going because there's a there's a loophole in the law that says that you can use them for research. Is that correct?
▶ 0:58:04Yes, sir. In 2020, CMS finalized a new regulation that said that OPOS's only get credit for organs that are actually transplanted. But the loophole allowed them to declare credit for pancreases that they said were recovered for
▶ 0:58:20So the people that dedic that donated these organs thought they were going to save a life or do something big. Have we has CMS defined research or put any timeline on what research is?
▶ 0:58:31No sir, they have not. How many pancreas do you know have been harvested since
▶ 0:58:37Over 7,000 across the United States.
▶ 0:58:39Is there any do we know the data that came from the research? Do we have any info that these pancreases were actually used for
▶ 0:58:49Sir, they were not. Since 2020, eyelet cell transplants have remained flat while pancreas harvesting has exploded with no proof at all that they were used for research. the investigation and thank goodness the oversight committee I want to give kudos to them the the the reading is is again shocking and evil.
▶ 0:59:08It showed that on a single day the New Jersey sharing network threw out threw out a hundred pancreases after federal agencies started investigating this practice. Uh Miss Ericson, what does that mean for patients? They threw them away. What does that mean for patients?
▶ 0:59:27It means that a 100 families in New Jersey on the worst day of their life because they lost a loved one, a wife or a child to a car accident or some other injury said yes to organ donation. They were lied to and their loved ones organs were cut out and left on shelves to exploit a CMS loophole. And ranking member Su, this happened to hundreds of patients in Alabama, too. And I'm happy to send you that data.
▶ 0:59:52Our report shows the our inspector general found examples of opios, organ uh uh procurement organizations misusing Medicaid dollars on everything from sporting events, limousines, retreats, five-star retreats, breaking the law on their nonprofit status. Miss Ericson, an OPO CEO Tom Moan from One Legacy in Los Angeles gave a presentation about money in organ donation.
▶ 1:00:17and he suggested that in America it is the oposs that hold the pur strings and that they only need uh the acquiescence of payers. Is that
▶ 1:00:28Yes, sir. I've seen that presentation and opios have clearly acted like they are in charge inflating their costs with million-doll salaries such as that of Mr. Moan and executive perks that have nothing to do with patient care.
▶ 1:00:39Who pays? Who is the payer when it comes to organ transplants?
▶ 1:00:44The largest singlepayer is Medicare. So the taxpayer
▶ 1:00:47and that's us and that's us. Mr. Chairman, thank you for shedding the light for everybody with a camera or watching. Thank you. And if you're in media, this needs to be on the front page of every newspaper and on every newscast that there is waste, fraud, and abuse. And it's shocking and it's evil. So, Mr. Chairman, uh I look forward to working with you to restoring trust. This needs to be a place of hope of saving lives and not of the abuse and the shocking evilness that we've seen. I yield back, Mr. Chairman.
▶ 1:01:17Thank you, Mr. Bean. Mr. Y.
▶ 1:01:20Thank you, Mr. Chairman, for holding uh this hearing today. Thank you to our witnesses uh as well for being here. Um and I want to also um thank in particular the whistleblowers uh who are here today. Um the two of you before us really took a great personal and professional risk in uh coming forward. um you've endured uh just incredible uh pain uh in in and perhaps even uh professional consequences as well.
▶ 1:01:45Uh but just know that your courage uh in coming forward today is certainly inspiring to me and I know to my fellow committee members as well. Um to to give the gift of life to donate in Oregon is an incredibly selfless act and for many it's their final act that they will ever make on this earth.
▶ 1:02:05The public and Congress have put our trust in organ procurement organizations to coordinate the identification, preservation, transportation, and transplantation of viable organs. Unfortunately, it's clear that there are bad actors who have misused this trust. I'm thankful that the Trump administration descertified one such bad actor in September after concerns were raised about safety and patient safety, patient safety and staffing shortages.
▶ 1:02:35More recently, this committee sent a letter to the New Jersey Sharing Network raising concerns compi compiled from nearly a dozen whistleblowers that include Medicaid fraud, research fraud, evidence manipulation, failure to obtain donor consent, skipping people on the organ weight list, and more chillingly, a cover up in where cases in a case where organs may have been harvested from someone who still showed signs of Miss Martin, in your testimony, you say that there were striking
▶ 1:03:05similarities between the allegations in this letter and the Oregon Procurement Organization where you were formerly employed. Can you go into more detail on those similarities and where do you find what and what do you find most concerning?
▶ 1:03:19Absolutely. So, um, I'll give you an example of one of the really dangerous organ procurement processes that are happening with pancreases. Um, even just a month ago at the hospital that I work at in Kentucky, one of my personal patients was in the ICU and I was part of her honor walk. They went on to recover her kidneys and pancreas for research. The kidneys were intended for transplant. Um, this patient had failing kidneys and was in multi-systemm organ failure, had an advanced age in her late 60s.
▶ 1:03:46Um, we we had ways of knowing that that patient probably should not have been a donor and her loved one should never been in hope that she was going to go on to save lives. So, this is part of the problem, right? we have we're taking the pancreas for research and it's counting as a full donor for our oposs. So processes like this we're not allowed to speak out about and whistleblowers like me if we have a problem we're being silenced immediately. So that's part of what you know it's very similar for me.
▶ 1:04:11Um I'm not sure if anything happened to those whistleblowers like it did to me but I feel like it just kind of all goes back who's making these decisions how did we get here? And can you elaborate more on a recent concerning donation after circulatory death or DCD uh cases in recent years?
▶ 1:04:28Can you repeat that question?
▶ 1:04:29Can you elaborate uh more on on a recent uh concerning donation or after circulatory death or DCD uh cases in more recent years?
▶ 1:04:39Uh well, there there's been several um the attorney general in KY's actually investigating several situations that are far worse than TJ Hoover's case. Honestly, um I think a lot of the problem is that we are not not providing the family with updates on actual neurological function and just those kinds of problems where we're using medications to chemically, you know, sedate and paralyze patients. Like we're never really giving patients a chance and that's part of the big problem.
▶ 1:05:04Thank Thank you. And uh Miss Ericson, uh as as I mentioned, the allegations in this letter were brought forward by nearly a dozen whistleblowers and more whistleblowers continue to come forward. In your opinion, are they are these issues uh with the New Jersey Sharing Network confined to this organization or are these practices pervasive throughout the industry?
▶ 1:05:24Sir, all OPOS are not the same, but what we have seen from this investigation is that too many OPOS are engaging in practices that are unethical and candidly illegal. Network for Hope operates in your state and so I appreciate anything that Congress can do to ensure that they are immediately removed and patients are safe, that the allegations in New Jersey are investigated.
▶ 1:05:45And Congressman Bean, since you mentioned one legacy, I want to say that they are according to the data one of the worst violators of harvesting human pancreata and we don't know where they go. I want to be clear. These things are being done with taxpayer dollars and wherever we know that there are problems such as these three OPOS, I hope Congress can call on the administration to act.
▶ 1:06:07Great. Thank you. And with that, Mr. Chairman, I yield back.
▶ 1:06:10Thank you, Mr. Y. Mr. Ch.
▶ 1:06:12I want to thank all the witnesses for your testimony today. And in particular, I want to say how sorry I am to Miss Knuckles for what horror your mother and your family experienced. And Miss G, I want to address another horror that could occur to transplant patients, and that is what could happen to them if they lose their ACA coverage.
▶ 1:06:36In your testimony, you explain that transplant centers often will not even place a patient on the transplant weight list unless they have stable, continuous health insurance. I'm thinking in particular of one of my constituents from Sierra Madre who is one of the longest surviving kidney transplant recipients in the entire country.
▶ 1:06:58He received his life-saving transplant decades ago and has been able to maintain his health because he's always purchased comprehensive coverage on the ACA marketplace made affordable through the enhanced tax credits that Democrats enacted. But now because Republicans refuse to extend those tax credits, his premiums for next year have more than doubled.
▶ 1:07:24He's terrified that he won't be able to keep his coverage and terrified of losing the transplant he fought so hard to preserve all these years. I also think of my friend and constituent who undergoes daily dialysis and is anxiously awaiting a kidney and is on the transplant list.
▶ 1:07:46But I think about what would happen to him and his uh wife if he is taken off the list because he loses his healthc care coverage. I know they will be absolutely crushed. So, Miss G, can you speak to how widespread this problem could become if Republicans fail to extend the ACA tax credits before January 1st?
▶ 1:08:12How many transplant patients might be forced off the wait list or denied life-saving coverage simply because they can no longer afford the insurance that transplant centers
▶ 1:08:25Thank you for that question, Congresswoman. Um, first let me say I'm sorry for the troubling situation that your constituents are in. Um over 20 million people are currently receiving subsidies through the ACA marketplaces. Um on average they will see their premiums more than double increasing by 114% according to the uh the according to KFFF. Uh in some states premium payments will triple on average.
▶ 1:08:48According to the Congressional Budget Office about 3.8 million fewer people will have insurance about 10 years from now if the expiring enhanced premium tax credits are not extended. Um, as you mentioned, transplant centers commonly require that patients have insurance in order to receive a transplant. This is to ensure that donated organs go to people uh where they will have a highest chance of success. And so people who are uninsured are commonly turned away or not listed for transplants.
▶ 1:09:19Um in the case of kidney failure or endstage renal disease, uh there is eligibility for Medicare uh for people whose kidneys don't work or are undergoing diialysis or receive uh have received a transplant. Um but millions others of other Americans will have no choice for affordable comprehensive insurance without the premium tax
▶ 1:09:39Thank you. And Miss G, Republicans claim that people like my constituents and uh their families should simply switch to cheaper junk insurance plans or rely on high deductible HSA based coverage. For these constituents that are transplant patients, being forced into a junk plan or high deductible coverage would simply not be adequate. It it it could actually also be dangerous.
▶ 1:10:08a missed refill or delayed lab could trigger rejection of the kidney that they waited years to receive. And you multiply this by tens of thousands of transplant recipients, uh then we would have a healthc care crisis for so many Americans. Can you explain why these plans are completely inadequate for transplant patients? How being forced into barebones coverage could jeopardize your health?
▶ 1:10:38Yes. So, uh, plans that are not comprehensive, including short-term limited duration coverage, associ association health plans are not required to comply with ACA regulations. Um, so this means that they can discriminate against people with pre-existing conditions and that includes people with chronic diseases, uh, with organ failure or who have previously received a transplant. Um, non-compliant plans can do things like charge more or deny coverage altogether for people with pre-existing conditions.
▶ 1:11:06They may not cover essential benefits like hospitalization or prescription drugs including the uh lifelong imunosuppressants that transplant recipients need or rehabilitative services. They can also put lifetime or annual limits on coverage. Um and these plans also are not required to comply with the ACA's regulations on out-of- pocket maximums. Um in addition, high deductible health plans are, as the name says, plans with really high deductibles.
▶ 1:11:33they can reach up to $10,000 or above uh for family coverage. And that means that when someone needs a major surgery, including transplantation, um or has a chronic disease or chronic condition, um they may be faced with facing that full faced with paying that full deductible out of
▶ 1:11:52Thank you. I yield back,
▶ 1:11:53Mr. Moran.
▶ 1:11:56Thank you, Mr. Chairman, and thank you to all the witnesses here today uh for discussing this very important topic. Today's hearing highlights the information uncovered by this subcommittee's investigation into the fraudulent schemes operated by a number of Oregon procurement organizations that we've been referring to as OPOS. Reports from both this committee and the administration have begun to show that several OPOS have violated the the trust of the American people and the law itself.
▶ 1:12:23Organ donation is one of the final selfless acts a person or family can commit for another person. However, several organizations have exploited this for personal gain and for financial gain. Let me be clear. Congress has a responsibility and a role to uncover the fraud, the waste, and abuse here. And that's what today's hearing is about. We have a responsibility to expose wrongdoers. Miss Martin, we thank you for your testimony and your courage to come forward and discuss the actions of your former employer.
▶ 1:12:53In your written testimony, you stated that the that following you coming forward as a whistleblower, the Health Resources and Service Administration, HERSA, launched an investigation. This was a key step in uncovering the fraud of the Kentucky or Oregon donor affiliates, uh, also known as Kota. As a former OPO employee and one who blew the whistle on a bad actor in the industry, what is your advice to other folks in the industry who feel that they should speak out?
▶ 1:13:21Thank you for your question. Um, I just want to remind everybody that's working in an OPO right now, we are on the front lines. We are that patients advocate. That's what we all sign up for, right? We have this great responsibility to the donor and their family and the amazing mission of organ donation and transplantation. So, I would say to those whistleblowers, come forward. Don't be afraid. Um, we're, you know, we are protected in ways, but at the end of the day, you know, we're all here to save lives. We can't let this keep continuing to go on.
▶ 1:13:51Um, Congress, please don't allow, you know, whistleblowers to not be able to come forward. Make it safe for everyone. Make it safe for us so we don't lose our jobs, so we're not afraid. Miss Martin, I'll add that without brave whistleblowers like yourself and others that have come forward, it is hard for us to uncover the truth about what's going on on the inside. You know, as well as I do that only those that are on the inside, day in and day out, know all of the facts. And for you to come forward and give your story is very helpful for us to do our job here in Congress. So, thank you.
▶ 1:14:19Following that investigation, Hersa uncovered 103 cases in which, quote, "The organ donation process was initiated in error. You went on to say in your uh testimony that this was a systematic failure." That was the description you used that cannot be ignored. Miss Martin, in light of your experience and the allegations against New Jersey Sharing Network, where should the committee focus its efforts on reform and what kind of reform would you suggest?
▶ 1:14:48Um, so I think the biggest problem we have right now is not like who's in charge, but kind of looking at how we got here in the first place. So with OPOS's running on kind of their own terms with no oversight, um I think that it's important that um I'm sorry, can you repeat the last part of your question again?
▶ 1:15:05Yeah. What kind of reforms would you suggest we undertake here as a as a committee to make sure that OPOS's uh can no longer engage in this bad behavior or that we can help with
▶ 1:15:16Thank you. So I think that we just all need to come together. You need to take into consideration the surgeons that are working, the people that are working at OPOS's, hospital staff, everybody kind of needs to sit down and kind of figure out where did we go wrong in the first place so that it doesn't happen again.
▶ 1:15:30Yeah. I guess um even more specifically, where's the pain point? Who needs to feel the pain of these investigations so that they change their behavior and no longer engage in this in this bad behavior? And I'll ask the same question, Miss Ericson, as well. So Miss Erikson, I'll start with you. Well, I I learned this from my military father. Leadership starts at the top. And the same organizations like Network for Hope, which Congressman Miller also operates in your state, cannot be allowed to abuse the public trust.
▶ 1:15:58They have to be immediately replaced. And I want to be clear about something. Many of the things that are being found by this committee constitute crimes. Medicare fraud is a crime. Lying to families about consent is a crime. So, Congressman, I really hope that this committee can work with HHS, States Attorney General, and the Department of Justice to make sure that these executives feel the full force of the
▶ 1:16:22Yeah. And how can we how can we even go further to help protect the whistleblowers and to make sure that we are providing law enforcement the tools that they need to investigate the bad actors in the OPOS? One thing I'd like to say about that is there is currently a federal contractor called the United Network for Organ Sharing or UNOS which has failed whistleblowers at every turn and ignored retaliation against them. It's even in investigative reporting that UNOS itself has retaliated against patient advocates.
▶ 1:16:53UNOS, when your previous colleagues in the Energy and Commerce Committee held a hearing, UNOS threatened witnesses testifying under oath with legal action at the same time they were being paid by the taxpayer to investigate their claims. That has to end. We have to stop all bad contractors, including those we know are retaliating against whistleblowers. Now,
▶ 1:17:14Mr. Chairman, we're talking about overseeing uh the ability to stop prophets from taking uh preference over lives. And we need to make sure that we put life at the forefront and make sure that it is essentially uh what we are protecting instead of the profits of or the the the money coming through and the operations of these opios. Uh I I I respectfully return my my time.
▶ 1:17:39Thank you, Mr. Miller.
▶ 1:17:42Thank you, Mr. Chairman. And thank you to the witnesses today. We're here to ensure that organ procurement organizations uphold the highest standards in both their life-saving mission and their responsibilities as nonprofit entities. There are 55 OPOS, each mandated by federal law to perform procurement efforts and their donation service area as certified by Centers for Medicare and Medicaid Services.
▶ 1:18:05In 2024, there were more than 48,000 organ transplants performed, continuing a record- setting trend and representing a more than 55% increase in organ transplants in the last 10 years. In my home state of Ohio, LifeBank is one of the original seven OPOS ever founded with a service area covering 4 million people and working with 80 hospitals, including many in the Cleveland region.
▶ 1:18:30Maintaining the highest standards of integrity is paramount in organ procurement, chiefly to foster trust and to save lives, but also to safeguard valuable taxpayer resources for these critical purposes. For this [snorts] reason, I'm concerned about reports that certain OPOS may be involved in alleged fraudulent schemes and improper actions related to their unique position as taxexempt entities.
▶ 1:18:54As many OPOs strive to maintain and lift the integrity and standards of care at these life-saving missions, some challenges I have heard from my home state of Ohio include changes to the conditions for coverage that will affect the 2026 reertification process, such as evaluation of only one of the four years as part of the four-year cycle, which may not account for process improvement efforts or overall performance.
▶ 1:19:20concerns that the transplate rate metric reflects transplate cent's acceptance of organ offers rather than OPO performance, yet still heavily influences on OPO's ranking and chances for reertification. For example, data reveals a 29% kidney non-use rate per organ recovered per transplant. Evaluations may not account for geographical health disparities and environmental impacts.
▶ 1:19:46For example, diabetes is at a higher prevalence in Northeast Ohio, resulting in challenges in the donor pool and organ eligibility. Miss Ericson, as you know, POS are certified by CMS to ensure the quality and safety of donated organs, including adherence to legal and regulatory requirements and to identify improvement opportunities.
▶ 1:20:10Unfortunately, we've been made aware of potential fraudulent mechanisms or manipulations of the system that could compromise integrity. Please describe the type of improper schemes that you may be aware of in the industry as well as your thoughts on how to combat them and would remedies like requiring transparency of the Medicare cost reports submitted by OPOS shed light on the issues of overbilling and unallowable cost.
▶ 1:20:36Sir, they would one of the most disturbing practices that happens at many OPOS is harvesting kidneys that will never be used in transplant. In fact, one industry insider gave a presentation to other OPOS about how they could differentiate between a finan financial count for kidneys and a clinical count for kidneys. That is another way of saying how to commit Medicare fraud.
▶ 1:21:01In fact, one whistleblower shared with Congress from Network for Hope that when their freezers were too full of kidneys that they could not use, they would take them to the University of Louisville Jewish Hospital and incinerate them. Part of the kidney harvesting problem is a problem of lying to families about consent and the fact that CMS will pay OPOS's whether those kidneys are ever transplanted or not. This has to end.
▶ 1:21:25I completely agree and it's abhorentt and thank you. Another question, Miss Ericson. I understand there may be other practices that do not increase Medicare reimbursement but may assist the OPO in certification metrics reported to CMS. Can you describe what other actions may be occurring to improperly boost metrics that may not be readily available through Medicare cost reports?
▶ 1:21:46Absolutely, sir. As your colleague, Congressman Bean said, there is also the massive harvesting of human pancreata that do not go to help any patients either through transplant or research. This has happened to 7,000 American families who have been lied to, including in your home state of Ohio. CMS has said it will close this loophole, but it has not done so.
▶ 1:22:08And not doing that leaves every American family at risk, not only of being lied to about how their loved ones very body parts will be used, but also it could keep dangerous OPOS in place by falsely inflating their performance.
▶ 1:22:23Thank you very much for your testimony and all the witnesses. Mr. Chairman, I have one more question I'll submit for the record. I yield back.
▶ 1:22:29Thank you, Mrs. Del.
▶ 1:22:31Thank you, Mr. Chairman, and thank you to all our witnesses for joining us today. I really appreciate you taking the time and to share your personal stories and to shed light on issues within our organ transplant system. Um, each day 13 Americans die waiting for an organ transplant, while more people are continually being added to the transplant list. I have the honor of co-chairing the Congressional Kidney Caucus with my colleague uh Representative Carol Miller.
▶ 1:22:58As co-chair, I've had a particular interest in our organ transplant system. Specifically, I've worked to make living donations more accessible by proposing reforms to the living organ donation reimbursement program. Um, currently, living donors often face out-ofpocket costs exceeding $10,000 when donating. Um, bipartisan legislation that I've introduced would help address this.
▶ 1:23:21The Honoring Our Living Donors Act would allow more donors to qualify for wage, travel, and caregiver reimbursement when donating organs. And while these reforms should be implemented as soon as possible, more work is needed to ensure our organ donation system is operating well. Donating organ is an incredible gift. Um, one that should be treated with the utmost respect. Any conduct that disrespects that gift should be scrutinized immediately.
▶ 1:23:49Um, Miss Gee, what action should HHS, CMS, HERSA take to root out fraud, waste, abuse in our current system? So, I want I would encourage this committee u subcommittee on a bipartisan basis to continue to investigate allegations including with our complaints that donor patients are being mistreated and opios are acting unethically to hold CMS, HERSA, uh, and HHS accountable.
▶ 1:24:15Um there's administrative action that HHS could take to ensure that donated organs actually make it to weight listed patients in need. Um in specifically HERSA and CMS uh should use existing authorities to demand greater transparency and compliance with existing rules. Um and they can terminate contracts when taxpayer money is wasted or patients are harmed. Um they could those contracted OPOS could be replaced with existing contractors who have exist better track records of patient safety and quality. Thank you.
▶ 1:24:45Um, every day 12 people die waiting for a kidney transplant and of those there are clear disparities in transplantation rates among disadvantaged populations. Um, it's incredibly troubling that black and Latino patients with kidney failure are less likely to get a transplant. My understanding is that in 2024 nearly 12,000 potentially life-saving organs, including over 9,200 kidneys, were discarded in the United States.
▶ 1:25:13Um, Miss Ericson, you talked about this a little bit. What suggestions do you have for how to improve the kidney acceptance rate and ensure that every adequate and available organ is transplanted? This is where data transparency is so critical and HERSA has really led an effort here to make sure that all OPO data is available for public scrutiny and for CMS to hold its own contractors accountable.
▶ 1:25:39We can tell in the data, Congressman, Congresswoman, how often OPOS's show up to families, if they show up equally to families regardless of their race or socioeconomic status, how quickly they get there. These are all data that should be available and to which OPOS's should be held accountable. Thank you.
▶ 1:25:59Um and then we we u we know that with less and less people having healthc care coverage, the challenges um that folks are going to have accessing preventative care. If folks don't have preventative care, um diseases may progress more rapidly. Um and as a result with lack of insurance coverage, we end up potentially seeing a need a greater need for organs smisky.
▶ 1:26:26Do you have a estimate of how what that impact will be in terms of increased need for transplantation because people aren't getting preventative care that may have prevented the need for a transplant?
▶ 1:26:36So I don't have a specific number, but I do expect that we will see the opposite of what happened during the ACA coverage expansions over the next 10 years. Uh the Congressional Budget Office predicts that the uninsurance rate in the US will go from about 8% to about 12%. And so some things I can I think we can expect to see are a smaller number of Medicaid insured patients being weightlisted for transplants. Uh people having less access to care. Um people less likely to have a usual source of care.
▶ 1:27:05Um and we also uh know that many transplant centers look at the probability of patient adherence in determining eligibility for listing and eligibility for transplant. Um, we know that Medicaid coverage is essential for reducing uh probability of inviction um for decreasing medical debt and the ability to pay for prescription drugs and other forms of care.
▶ 1:27:28Thank you. I appreciate Thanks to all our witnesses. I yield back, Mr.
▶ 1:27:32Mr. Sisi,
▶ 1:27:34thanks, Mr. Chairman, uh, and the ranking member for holding this hearing today. Really appreciate you bringing attention to this. If uh you ask the American people what are the issues they're most concerned about today, they say affordability and health care as being two of the top issues that they care about. So the more that we can do uh to tie this issue into affordability of health care, I think the more attention we can get to this issue. I want to start by thanking the witnesses. I really appreciate you taking the time here today for telling your personal stories.
▶ 1:28:04Uh it's a big hassle to come down here to, you know, come to this thing. you have to prepare and the time that you spend I'm very grateful to you for spending the time. U we've heard everybody talk about it today. There's 100,000 people waiting for organs in the United States of America and every day as uh Congresswoman Del Benny just mentioned 13 people die waiting for organs.
▶ 1:28:26And uh there's these allegations that you've all talked about and other people have written about of abuse that are taking place that's costing a lot of money. Uh that it's uh uh treating people unfairly. Uh some really shocking things that we've heard in some of the testimony today about, you know, people getting operated on when they're still alive. Uh scary things that that are happening. Uh I made a point of speak to a constituent of mine today who I know is looking for a kidney. She told me she'd been waiting nine years.
▶ 1:28:57I mean, I I'm going to dig into that further. I mean, how could it take nine years? I mean, it's just hard to imagine. Um, and I'm also concerned about this issue that we provide incentives and payments for harvesting the organs, but not necessarily the same for actually resulting in a transplant. And I want to just explore that with you a little bit.
▶ 1:29:17So my understanding is is that there are 54 organ procurement organizations in the United States of America and some of them do a great job and some of them are really bad. And part of our hearing today is to try and highlight the ones that are doing a bad job so that we can hold them accountable. We heard about the one I think in Miami you talked about earlier that's already been uh held accountable and today we've heard a lot about Kentucky and New Jersey.
▶ 1:29:48So I just want to get clear. Am I am I right in what I'm saying that you know we want to try and get CMS to hold uh Kentucky and uh hopefully New Jersey accountable. Miss Erikson, you seem to be nodding your head. What do you what do you say to that?
▶ 1:30:03Yes, sir. And the way that CMS can hold them accountable is by immediately removing them and replacing them with higher performing OPOS that will do the job with integrity. They can do that
▶ 1:30:14So some of the ops do a good job. They're not all bad.
▶ 1:30:17Yes, sir.
▶ 1:30:17And they're rated uh by uh the uh CMS. And for example, my OPO in my district, I called them up in preparation for this hearing. They had a very bad rating back in 2000 and today they're in the some of the higher ratings and they've dramatically increased the number of of organs that they have uh both harvested and transplanted. Um so is is there anybody else that we should be focusing on other than uh Kentucky and New Jersey right now?
▶ 1:30:47Is there anything that you want to call to our attention?
▶ 1:30:50Yes, sir. Absolutely. And we can even look at the CMS data and investigations that have happened across four committee investigations. For example, one of the largest OPOS operates in Los Angeles. It has been investigated by your Senate colleagues for harvesting human pancreata as part of fraud schemes. Uh there are other OPOSs who have been singled out for self-deing and conflicts of interest that are also under investigation by your committee such as Oklahoma.
▶ 1:31:17But sir, I think you're right that Kentucky and New Jersey are the two where there are just rampant whistleblower accounts that we have to make sure CMS acts on. Now,
▶ 1:31:26now Miss Ericson has talked a lot about pancreas uh pancreata. Uh my understanding is that 80% of the organs that are sought are for kidneys. Is that is that accurate? Does anybody know?
▶ 1:31:40Yes, sir.
▶ 1:31:40That is accurate. Okay. So, um we want to just try and bring attention to this issue as much as possible from the stories that you've told Miss Knuckles and Miss Martin and Miss Ericson and the data that you've provided us Dr. to try and hold the bad actors accountable and try and improve the system. Is there anything we can do to incentivize more transplants as opposed to just harvesting of data? Do we go
▶ 1:32:07One thing, sir, is we can make sure that there is no such thing as a financial count for kidneys, right? The clinical count is what matters. The clinical count is what save lives. The financial count, that's Medicare fraud. So right now it's my understanding that we spend between $500,000 to $2 million for every single transplant that takes place from the harvesting to the placing to the transplant. And that's a lot of money that we spend uh in mainly Medicare I think but also Medicaid as well.
▶ 1:32:37And we have to make sure that the bad actors are held accountable so that this money that's spent is spent spent in an efficient way that actually makes people's lives better. So the more transparency that you've talked about uh and bringing uh shining a light on this issue is a very big help to getting that done. So thank you so much everybody for your time again Mr. Chairman. I yield
▶ 1:33:09Thank you Mr. Chairman very much and thank all of you for coming. Um, Miss Ericson, first of all, it's good to have a UVA graduate here. Um, we always appreciate that. Um, excuse me one second. Um, M. Ericson, I understand that your father was a Navy pilot who died organ failure.
▶ 1:33:34You talked about it in your testimony and, uh, buried at Arlington National Cemetery um, with with my parents, my grandparents. Um I'm fascinated by your testimony about the the lack of oversight in terms of the the pressured consent um trying to people who'd otherwise survive doing all this.
▶ 1:33:59Um what can we done to protect the whistleblowers, the people in the industry who come forward and talk about these abuses? What should Congress be doing to protect the whistleblowers? Well, first of all, encouraging them to come forward, which is why I'm so grateful for this committee's investigation.
▶ 1:34:17But the other thing is demanding that HHS immediately fire any organ contractor that is found to have retaliated against whistleblowers, to have covered up their claims, and to have try and silenced patient advocates themselves.
▶ 1:34:33There's been reporting in the Richmond Times, sir, in your home state and my home state, too, about how the United Network for Organ Sharing has used its federal contract and federal taxpayer dollars to try and cover up cases and retaliate even against congressional witnesses. That this happens at all is a problem. That it happens with taxpayer dollars is unconscionable. So, I'd appreciate anything this committee can do to make sure that HHS removes any contractor who's engaged in this activity.
▶ 1:35:01it would seem the least they should be doing. Mix, we have 3,000 Virginiaians on the Oregon waiting list. One I think is here today, Garrett Erdle, who's a living kidney donor and has served for years as chair of the patient affairs committee in the Oregon procurement transportation network. He's been a tireless advocate for reform.
▶ 1:35:19You wrote in your testimony about um literally some of these inappropriate opios destabilizing parents through the patients through the overadministration of comfort medications like fentanyl. Isn't this essentially I'm trying to kill people in order to get their
▶ 1:35:41Yes sir. I want to be absolutely clear. The things we are talking about are crimes and they are currently being investigated by crimes by the attorney general of Kentucky. And I hope that this committee will share all information with both federal and state law enforcement. Whistleblowers have made similar claims in New Jersey. And that is not just a danger to the people who live there. It's a danger to any American who travels through any of these states where whistleblowers have shared these practices happen.
▶ 1:36:12It's it's frightening just to to know that you talk about um the OPOS's the 990 showing that more than a half a billion dollars was translated was transferred to quote unquote related organizations. Who are they and why do they need the money? What's the function of these related organizations?
▶ 1:36:30I'm glad you asked that question, sir. This goes back to the fact that CMS has to stop writing checks that it never looks into the use for. The Office of Inspector General more than 10 years ago found that the Los Angeles OPO called One Legacy had misspent dollars on football games, limousines, five-star retreats. And what did they do? They asked them to pay that money back. Then what did the OPO do?
▶ 1:36:53It opened a related organization and moved tens of millions of dollars to be farther outside of Medicare's control. We have seen in fact on publicly available 9990s as you said more than $700 million has been moved in recent years and it's hard to see how that's in patient benefit and that those are taxpayer dollars and we need to understand where they're going and shut down these shadowy channels right away.
▶ 1:37:21You write very well about the difference between organ donation and organ harvesting is consent. But you also talk about the potential coercion in obtaining consent. What does that look like? The potential
▶ 1:37:34We've heard from whistleblowers in New Jersey that candidly, sir, if a family looks like mine, ask once and then leave them alone. If they look different, if they look like they don't have resources, if they can't speak English, do not leave their side until they consent to organ donation. That is We need to hold them accountable for that.
▶ 1:37:55And also back to what Congressman Bean said, no American family is consenting to their loved ones organs to be cut out as part of Medicare fraud, as part of exploiting the pancreas loophole. But that's what's happening. And so if there's one thing that I would really ask of this committee, it's that it's to consider that these things are crimes.
▶ 1:38:16And just as there was crossadministration act action to tackle the opioid epidemic to resource not just the department of justice and I but also state attorneys generals. That's the kind of crisis we have right now in Oregon procurement. Th those are the kind of resources we need to make sure that Americans are safe.
▶ 1:38:36Yeah, Mr. Chairman, thank you and thank all of you very much for coming and bringing this to our attention.
▶ 1:38:42Thank you, Mr. Meyer. And now you're stuck with me. Um, a a handful of questions I just want to sort of get my head around because I've read over certain portions of your testimony. We've actually been collecting articles for almost a year or two in regards to the technology, the subject.
▶ 1:39:04Um first one is there a different scoring system between a kidney, a lung, a liver? Can anyone answer that? Is there a different um hierarchy on both um eligibility um how it's processed, how it's provided to um a patient? Miss Ericson, any can you answer that?
▶ 1:39:30Sir, kidneys are treated differently when it comes to Medicare reimbursement, which is why the Office of Inspector General itself identified that the OPO reimbursement structure is so susceptible to fraud, waste, and abuse. And again, that that's grim. The pancreas gets credit in terms of keeping your contract for metrics and
▶ 1:39:50No, what I was curious is I was reading in one of the journal articles I have that lungs actually have sort of a different hierarchy of score. um and that may not be as part of the um reimbursement. It's actually on how they're processed and handled and procedured. Does that ring a bell with you? It
▶ 1:40:10not in terms of how CMS considers OPO performance, but if if there's another rating, I'm not aware of it, sir. Oh,
▶ 1:40:16okay. Um in the hierarchy of a decision of someone is circulatory has circulatory passed away compared to um brain waves pass away. One is 5 minutes one is 90 minutes um but it is the hospital that makes that decision.
▶ 1:40:39It is the hospital that declares death. Uh but one of the things that has come out through the HERSA's detailed report about network for hope and kota in Kentucky is that often OPO staff uh get involved in that decision-making process in ways that they should not.
▶ 1:40:54Okay. So at that moment um who is actually the the to blame there if if um organ procurement is hovering around um protocol is um I have brainwave death and that is 90 minutes. Um ultimately it is the hospital that is to make the the declaration.
▶ 1:41:24is it a shared responsibility? Is it um the hospital's responsibility? Who actually at that point if you're the
▶ 1:41:33Um who is actually to be held
▶ 1:41:35It it's the hospital's responsibility. I'll turn it over to Miss Martin in a second, but I want to give one example of where there is a shared responsibility for what everyone is there to do. There is a case that's been shared with congressional committees out of Mississippi about Paula Denison which I'm sharing with permission of her family. In that case, a rural hospital in Mississippi declared brain death. Miss Dennis's adult children agreed to organ donation on this that basis. Now, let me be clear that was a mistake the hospital made.
▶ 1:42:06But what happened next is unconscionable. Miss Dennison was taken away by the Mississippi OPO and she was cut into the next day to biopsy her liver whereupon she started crying because she was not dead.
▶ 1:42:19Is is the term for that reanimate
▶ 1:42:22in this case? No sir, it was this case was just it was let me be clear just a complete mistake. But what shocks the conscience is that for 19 hours the Mississippi OPO did not call a physician. They did not tell Miss Dennison's family. They kept documenting her responses to pain until she did not die. Her adult children then received a phone call while they were at a funeral home planning their mother's funeral. So to be clear, Congressman, did the hospital make a mistake?
▶ 1:42:52Absolutely. The OPO also did something.
▶ 1:42:55But the OPO in what world a human being doesn't call a doctor doesn't make sense to me. Look, right now I'm also trying to just lay out that if we're going to do policy,
▶ 1:43:05you know, the hierarchy of responsibility. Um, Miss Martin, you had a comment on is my understanding correct? Um, brainwave death 90 minutes.
▶ 1:43:17No. So, there's there's the two separate pathways to donation. One is through brain death.
▶ 1:43:22Could you do me a favor? Will you Is your mic on?
▶ 1:43:24It is.
▶ 1:43:25Then pull a little closer. That's all.
▶ 1:43:28Okay. Okay. So, there's two different pathways to organ donation. The first is through um brain death. And with those donors, they they're just taken into the O and the they have the timeout and the operation is begun. Uh the second pathway is through DCD donation. These are the donors that are brought to the O, they're prepped and draped and they are extabated and given 90 minutes to about 120 minutes.
▶ 1:43:47This kind of varies dep depending on the hospital policy but after that time that they have passed um when their heart stops beating when they're asy a declaring physician provided by the hospital will come in to declare death at that time after five
▶ 1:44:00Okay. And so that's the declaration of death. Um the OPO has to wait is there a period of time
▶ 1:44:07uh before after they've been declared
▶ 1:44:09Yes, both.
▶ 1:44:10Yes. After the 90 minutes that that's there'll be a fivem minute handsoff period in which time the hospital provided physician will come to make sure that the patient has died and they'll declare death at that point. With brain death donors death is declared as soon as the um the patient is declared brain dead by imaging or bedside exam.
▶ 1:44:27Okay. Thank you. That's actually helpful. Um we actually have been also exploring um a series of articles on the cryopreservation of kidneys.
▶ 1:44:41You know, we've all been reading the articles of some of the um genetic um manipulation in swine and even some of the um attempts there to minimize anti-rejection drugs um by some of the um and a fascination of what's happening there.
▶ 1:45:01We also, you know, um, so we're actually as a discussion on for those of us in the oversight committee, it's more than just taking a look at organ procurement organizations. It's also helping CMS and others build a set of hierarchical rules as the technology we believe is about to go through a revolution.
▶ 1:45:26We've already seen a simplest example think where we were a dozen years ago in liver transplants and then a cure for hippatitis C came along and the number of liver transplants changed remarkably. We actually had liver transplant centers around the country close because of the you know saldi and the cures for hepatitis C.
▶ 1:45:50Um, we want to make sure we futureproof the policies that we're trying to encourage CMS, HHS, and others to adopt. Um, so with that little bit of rambling, um, please be prepared for the next week or so, you're going to get some questions in writing. We've already had a couple members share that and they will be made part of the record. And with that, I thank you for spending time with us today.
▶ 1:46:18Um, and I really appreciate because sometimes the stories are heartbreaking and hard to hear. Some of them you understand the scale of the of the system. Uh Miss Martin, we've actually are digging into a couple things that were in your testimony of what looks like criminal fraud um and exploitation of Medicare and Medicaid in the system. Um so, thank you for everything you've all given us. And with that, the hearing is adjourned.