Transcripts For CSPAN2 Health 20240704

Cspan is your unfiltered view of government. Funded by these Television Companies and more including comcast. Are you thinking this is just a Community Center . Know it is way more than that. Comcast is part of 1000 committee centers to create wifi enabled so students from low income families can get the tools they need to be ready for anything. Comcast supportspan as a Public Service along withhese other television providers. Giving you a front row seat to democracy. Next transplant recipients and organ procurement professionals testify on the effectiveness off the organ transplanthe system. This Senate Finance subcommittee on healthcare hearing is about an hour and 45 minutes. [background noises] good morning. The subcommittee on health of the Senate Finance committee will come to order. Hour i first want to thank senator wyden and senator crapo for their help in allowing us to move forward with his hearing today. In regards to transplants. I also want to acknowledge senator young not only for his taking on the responsibilities for this hearing but also his leadership on this issue. We thank senator daines for his cooperation and allowing the subcommittee todays hearing lastly i want to thank senator grassley who has been the real champion on this issue for many, many years. He will be t joining us is that the Judiciary Committee right now. He will be joining us shortly. At that time he will be recognized for his Opening Statements. In the unites states the need for organs is far greater than those available. There are about 104,000 adults and children on the National Transplant waitlist. Every 10 minutes another person is added to it. In 2020 Senate Committee on finance and investigation into the system andst document significant failures. Today we discuss the path forward to a better system. My constituents in maryland have access to two excellent transplant centers in our states appeared maryland also is a tier one Organ Procurement Organization that is taking innovative action to some of the most underserved areas like Baltimore City to encourage Organ Donation. This op o has been among the top 10 performers nationwide. Access to transplant in maryland is far from perfect. Despite the highperformance transplant ecosystem, due to the major underlying issues with the current transplant network, 148 people died while transplant waiting list in maryland last year. That is unacceptable. Other states are not so lucky. Marylanders and people across the nation deserve better. Naturally 17 people die each daywaiting for an organh transp. Op os are ranked tier one, 22, 23 depending on performance levels tier three being the lowest. I going to the center for medicare and Medicaid Services in 2023 Performance Review 24 op os or 42 have been classified tier three. Senator wyden, grassley, young youngand i believe in the Senate Finance committees investigation into the organ transplant system for over three years. Each new line of inquiry has exposed more and more failures. Which are often borne by the sickest patients in the nation. Specifically our committee has uncovered transportation and testing failures that up at patients lives at risk. Outdated Information Technology undermining the network a lack of oversight by the current Organ Procurement Transplantation Network op tm contractors. The United Network of organco sharing, and misuse of medicare funds. These disparities impact people throughout the country including those who are low income, the uninsured, members of racial ethnic minorities, people with disabilities and rural populations. Even more concerning u. S. Digital services found you knows is incapable of modernizing the opt and it infrastructure. The stakes of neglecting the needs of the Underserved Community could not be higher. During the last administration cms put out an op oh final rule which will establish a tearing system that triggers decertification competition reassignment. Has taken critical steps to modernize opt and statutory changes are necessary to ensure able to work better equipped organizations to ensure opt and is operating in efficient and safe manner. When lives are at stake congress cannot accept logistics report administration as excuses. Last week we held a roundtable senior officials from the Center Medicare and Medicaid Services was productive conversation we discussed efforts to modernize transplant system increase transparency and accountability. Currently we have a system that works well for some. Some of our witnesses will discuss today. Weed is insufficient. An individualen lives of their bill to two a for travel to get care should not determine access to lifesaving organs. Today we have the opportunity to or from patients and professionals who are working on key reforms are committee will l continue to address the Biggest Challenges facing our nation including the transport system. We demand better. But that limit recognize senator young. Thank you chairman for your leadership on this issue. See senator wyden here who has shown exemplary leadership as it relates as well. One of the real champions we indicated will be joining us a bit later as i understand. Everyday 17 people die while on organ transplant waiting list. Another 13th or removed we are too sick to receive a transplant. The total is more than 100,000 americans on the organ transplant waiting list today. Including nearly 1200 in my home state of indiana. These are not just statistics. These are lives. Organ donation is a personal issue for me. My friend from jeffersonville indiana died because his heart transplant never came. We served together in the mehsuds marine corps and i have gotten to know connies wife, jennifer, over the years. She has made it her mission to raise awareness about the transplant process and help others from facing a similar fate. Because the organ transplant system is so complex most people do not know how it works. Or if patients are being protected. After it was elected in the early 20 tens i explored ways to try and incentivize innovation in the space. I had a silly idea to try to get a price concept to coax people to innovate the bureaucrats told me it would go nowhere. I began working organ procurement of oversight reform in 2018. I told the Washington Post then we cannot continue to allow thousands of americans who die each yearch waiting for lifesavg organs that we know are available if only the system mwork being managed by competet individuals operating in the light of day. I was proud to help champion Performance Measures Organ Procurement Organizations with the centers for medicare and Medicaid Services adopted and finalized in 2020. Enjoyed my colleagues german wyden, former chairman grassley and senator cardin launching an investigation that same year. I welcome the announcement earlier this year that her so it will break up the Organ Procurement Transplantation Network monopoly. I dont my colleagues to co lead securing the u. S. Organ Procurement Transplantation Network act. Bipartisan legislation that gives herself the tools to implement commonsense reforms to act impatient interest. There is still much work to be done. Our friends and neighbors are still dying every day. It does not have to be this way but functional Organ Donation system could facilitate tens of thousands more Organ Transplants every year. American deserve to know what the Organ Donation and their government to increase Organ Donation transplantation as well as to ensure Patient Safety. Hhs and Congress Must treat Organ Donation reform but the urgency it deserves. Lives are being lost we cannot stand by will some of our most vulnerable neighbors die on the organ waiting list. Waiting for a call that never comes. We need strict enforcement of the rule, form of the opt in and to ensure the entire Organ Donation transplant system operates in the best interest of patients. Weve taken initial steps but cannot stop there. Look forward to hearing from our witnesses. And learning from their a experiences and expertise of living and working within the Organ Donation transplant system on a daily basis. I wont stop working on this issue until we increase the availability of organs for patients inty need and eliminate the inefficiencies occurring in our Organ Donation system. Thank you. Of the think you senator young. Senate finance committee of the leadership of senator wyden has been the moving factor on the investigations uncovered so many mistakes in abuses we have in the Current System. Senator wyden has been our leader in captain on this issue. I just want to note one aspect of her service on the finance committee as we have always considered this committee where you see the nba allstars in the healthcare arena. And certainly chairman cardin has been continuingg that. I am sitting in the seat this morning that was occupied for many years but senator rockefeller who was a greatwa champion and would be with us all the w way in terms of cleang up these abuses my colleague just mentioned bernard also especially what to think her republican colleague senator grassley and senator young. This has been in the best tradition of the Senate Finance commission with all the allstars we have in healthcare policy working in a bipartisan way and i appreciate it. Im going to be very brief we have a terrific panel of witnesses am going to have to be in and out to start by updating members and the public about our work and particularly moving forward with the Health Resources and Services Administration to implement the modernization of op tm the organ procurement network. We are pleased with the bipartisan support that the bill has gotten it has been good to see, who knows is not opposing legislation i can report to my colleagues and people who are following this ive had a number ofproductive conversations with Sherman Sanders on this. I want everybody to understand because im not going to be able to be here for the whole discussion, this committee on a bipartisan basis is witnessed by my colleagues here, we are going to be pulling out all of the stops to get the senate to act on this issue as soon as possible. The reason we are is because both of my colleagues just mentioned it. Think senator young use the word urgency. Cannot summit up better than that other than maybe a capitol you because this is a matter of life and death are too many americans. There is not a moment to lose friends, with respect to getting this bill passed in the Health Resources agency is on track to begin the contract process this fall. We are going to be working here to complement their effort. Last week we hosted a meeting with officials from the centers for medicare and Medicaid Services to discuss the administrations efforts to modernize the network to connect more americans with lifesaving organs. In particular bring more accountability and competition to the contracting process. The three of us senator grassley and others who attended, we got the message loud and clear that the agencies want to show a new emphasis on accountability and coordination. That was very welcome. A couple of other point is hearing is going to give us a chance to clear up confusion about what the legislation sticks sets out tond do the rums and if you listen to the rumors, i am telling you they are trying to run an incumbent Protection Program to smear this bill and senator grassley and i in particular at this session asked questions with respect to power legislation and these socalled rumors the three of us are going to it to privatize the system. If you listen to these rumors of site congresspeople are trying to sell organs on the side. It was outrageous the kind of stuff that we were hearing. Here is what we were told the Health Resources agency quote no, the system is not being privatized. In fact it notes our bill for the first time mandate in independent board of directors to oversee opt separate from the contract holder. Second, i asked to explain the boundaries that are actually in place for a Nonprofit Organization birdhouses going to work if they get a contract as part of opt end. They said forprofit organizations would be held to strict federal standards for contractors let me quote again limits on profits and fees and comprehensive oversight both before and after the contract. Also made clear they intend section of the contract concerning support for the independent opt and board of directors to be awarded to a Nonprofit Organization. So, to allo of those people that are trying to spread these false and ugly rumors about what this bill does, shame on you were going to blow the whistle and make sure the American People know the facts. These callings will be here this morning i will be in and out. We are working in a bipartisan way. By the way special credit to senator grassley who with me is the cochair of the whistleblowers carcass. We know a little bit about people speaking out if there are abuses. That is not the case here. I will just wrap up by saying here is what is. We want to make sure our country has the best in class Organ Transplantation system in the world. We found critical failures looking in ag bipartisan way fm the current contract holders especially when it comes to matters such as information, technology and logistics. The bill was written from top to bottom to ensure competition for technical functions like those will help the opt in perform to the highest level possible. Thanks to my colleagues ive spoken to both of them in recent days. Everybody understands this is priority business the Senate Finance committee theres not going to be an ounce of partisanship here were going to stay at it to get this done because the American People deserve it and is long overdue. Senator grassley, before you came i do not want to make disability bouquet tossing contest i was talking about the fact you have been bulldog in this every step of thehe way. I was really grateful last week we have the session to go through the legislation that we could all be together we appreciate your words blowing the whistle on these outrageous rumors that have been spread by some people who dont really want change that somehow to privatize things. Thanks for all your good work you will see it in the record we are so appreciative of your leading this for so many years. I respond by saying i thank you. We are finishing some stuff i started a long time ago. You were there helping me with every letter. We are in it together for the public. Thank you,e mr. Chairman. Think he senator white and thank you for your commitment to keep this on track to get done. It is very, very bipartisan. Senator young and i have already commented about senator grassleys leadership on this issue. We are both been mentored by senator grassley in regards to then need for this committees oversight on programs that we enact. He has taught us well. Nator grar this leadership, you are recognized. Thank you, chairman. We are here to visit about the urgent need to reform the transplant system and the deadly cost to patients and generous donor families due to decades of inaction. Due to decades of inaction. In 2005 i served in the investigation of the deadly failures in the monopoly past with managing the u. S. Organ donation system. Since then more than 200,000 patients needlessly died on the organ waiting list. There is a reason that i call eunice the fox guarding the house. For nearly two decades eunice has concealed Serious Problems the nations order and became an organization with the op instead of working to uncover incorrect the corruption. The human tragedy is more horrific because many of these were preventable they were the result of corrupt unaccountable monopoly that operates like a cartel than a public servant. A bipartisan investigation started when i was chairman of the committee and i already referred to chairman widens efforts working with me we uncovered kidneys loss in airports and technology that goes down in the coverup of patient staff. In uncovered a history of misinformation and lobbying against accountability and transparency for the op owes it is supposed to oversee. Were also aware of ongoing threats to whistleblowers and Patient Advocates instead of amending its bylaws to protect the brave individuals eunice has continued his longstanding of intimidation and retaliation. This is unacceptable. Tens of thousands of organs go to waste every year exploiting generous donor families while organ procurement executives travel on luxury private jets to fivestar resorts. Investigative reporting has revealed anticompetitive behavior designed to block new entities and Competitive Bidding process for new contracts. Entities that have the technology and skill desperately needed to save our lives. Our nations organ procurement system is a deadly failure. In recent years eunice has attempted to disguise its failures by misrepresenting alleged record increases in oregon donations. Unfortunately these increases are the result of Public Health tragedies including Opioid Epidemic which is ravaged our rural communities. It is time that we put an end to eunice attempt to use the nationson drug crisis and to ue up its members to try to show the system is working. Simply put, the system is not working. For too long eunice has run a system that benefits executives who run it complicating and collecting taxpayers funded perks and paychecks. It is been more than 20 years since forbes called eunice the federal monopoly that is killing the supply of transplantable organs and letting americans who need them die needlessly. Our bipartisan investigation is clear they failed our fellow americans and disproportionately solved with respect to the people of color and rural residents. The solution is also clear Congress Must pass a bipartisan deal 1668 patient lives are at stake, i yield thank you, mr. Chairman. Senator grassley thank you for your statement and more importantly thank you for your leadership in response to senator wyden our topic underscores the point that you made the cost of inaction in the urgent need to reform the u. S. Transplante system we have an excellent panel that have experienced firsthand from the challenges in transportation system. Were pleased to have our witnesses here today toed help s in your entire statements will be made part of our record and youll be permitted to proceed as you wish. Im going to introduce the five of you in the order in which you cewill be speaking and i will start from barn bardstown kentucky premedical graduate from the university of louisville previous kidney transplant recipient and current transplant candidate, she received all good excellence in Kidney Disease Education Award from the National Kidney Foundation Awarded to those with the care and outcome of those affected as well as communicating risk factors and d plummeting outreach efforts the first publication appeared and theea stat news highlighting the failures of the u. S. Organ donation system and black and brown individuals seeking transference. She will be followed by Molly Mccarthy threetime kidney transplant recipient she grew up in northwest illinois and received her first transplant and 1991 at the university of iowa. Her second at the university of wisconsin and the third at the university of washington she is in her fifth year as vice chair of the committee. He is the president and ceo of life connection of ohio which serves families and saves lives the Organ Donation in northwest and west central ohio. Before taking on the reins of life connection in ohio he served as the Vice President of Clinical Affairs at the Donor Network under his leadership the Donor Network doubled its performance within three years and last will hear from ray lynch the professor of surgery and public and Health Sciences and the director of transportation quality and outcomes at Penn State Health Milton S Hershey Medical Center preview the transplant surgeon Whose Research improves access to organ procurement andt transportation care. His work has formed the basis for objective metrics for the objectivists of organizations. A fifth witness is donna cryer the founder and chief executive officer of institute the largest patientt led Health Nonprofit se has channeled her experience as a patient inflammatory bowel disease with a liver transplant recipient interprofessional advocacy across the career and policy Consulting Clinical trial recruitment in nonprofit management. She has been awarded the distinguished advocacy award by the American Association for the study of liver diseases and the founder word for the global genes among many of her accolades for her pioneering patient advocacy. We will start with ms. Goldring. Hello and good morning chairman gordon, Ranking Member young and members. Thank you for the opportunity to testify before you today my name is luke vaidya i am at dependent on the u. S. Organ donation system. To save my life while i wait a second kidney transplant. In the meantime the system is continuing to fail me badly. As a toddler at the age of three of his diagnosed with a rare Kidney Cancer that took the function of my left kidney and what i was 177, i went back into renal failure and i received a first kidney transplant at that time in unfortunately 2015 i went back into kidney failure and at that time i was not ready for another chance but i did not have a choice to go back on dialysis. I been waiting nine agonizing years for transplant depended on a dialysis machine five days a week just to be ableo to live. I was told i would receive its kidney transplant within 3 5 years but yet i am still waiting. Im undergoing monthly surgeries to get my dialysis access to work so i continue to live until i get a transplant. The waitlist is not like 1 100 where everybody thinks you get a number. Ive never notified where i stand on the list or when ill get the call. I have to depend on the algorithm to make a decision of what my fate will be. Every day that i am waiting and closer to becoming one of the 30 americans who die waiting for an organ transplant. I know this all too well thats why had to take matters into my own hands and start searching for a Living Kidney Donor by starting a social media campaign. Ive lost multiple Family Members and friends to organ failures and ive seen more funerals than Success Stories and i dont want to be the next. The reason its hard to get a transplant is because the Government Contractors running Organ Donation are failing and s corrupt. I grew up in rural kentucky where the organ procurement system, the appeals are now failing as like many intercountry way over 28000 organs every year are not recovered. Instead, they go lost or they are wasted. More than one and four kidneys are thrown in the trash as generous families have offered to donate. Its even worse for people that are labeled minority or people that are brown and black. Her kidney function is relatively calculated based on race it into laser access to transplant. Opos are less likely to show up at his time to get authorization to be a donor. The treatment that we get is less urgent and less care and less compassionate. I know this firsthand as my grandmother was an organ donor and we had to personally reach out to the opio just to show what, these failures lie at the seat of the monopoly. Patients like me completely go for guidance in the system that is failing every day as more and more of us continue to die. Just a few weeks ago a donor family reached out to me to be a direct kidney donor meeting they chose me specifically for kidney transplant but unfortunately due to the errors in the technology i was listed as inactive in this is a clerical error and all that they told me that this was a clerical error and they cannot figure out why it was inactive. When it came down to it, im actually active on the transplant list. This was not a one off event eunice technology is unsecure and unreliable and it crashes hourly. During the time transplant candidates are not getting phone calls. While kidneys continue to go lost lives continue to go lost in the process. Every time this happens patients like me continue to die you cannot even imagine how this feels every time i lose a Family Member because of the failures or every time i lose. A friend r look iny the mere and im standing in the grave hoping to see another day waiting on a call that may never come. As a board member systematically the proposal said hurting minorities based on where we live for living in the south and rural america. And we can choose where we live where we wait for transplant. This is never the case while there using taxpayer dollars to get specific trips large salaries, golf tournaments and vacations and beach houses patients that look like me are and coffins. There is never any consequences for them because the government has never held them accountable. The government has failed me and many of us sitting here today. The only solution to replace opioids is to get rid of eunice not tomorrow and not two years from now but today. My fate lies in the hands of the senate. My fate like many other americans lies in the hands of you and all your constituents. Im just asking that you stand behind this legislation as we move forward and all of congress danced together to pass the new legislation so more lives can be saved and less can be put in coffins. Thank you. Thank you very much for your testimony you heard is mentioned the numbers that are out there but there is nothing like seeing the individual that is impacted by that each member is a person. Sharing youror story with us, it is powerful. Ms. Mccarthy . Good morning chairperson Ranking Member young and the members of the committee im grateful to speak with you today my name is Molly Mccarthy, im exceedingly grateful threetime kidney transplant recipient after having my first transplant 32 years ago on one of the fortunate ones, i made it despite the broken and corrupt system weve been saddled with. Im also aware that many patients are not as fortunate. I received two living donations, one for my mom and the other from my dad an option that somebody patients dont have. 11 years ago i received my third transplant from a generous deceased donor and voluntary healthy now im acutely aware i made another whether the future and whether that happens is depended on what congresshe does now. I am here to plead with you to please pass 1668 and the reason why its as simple as it is heartbreaking the federal monopoly contractor managing the Organ Donation system you knows is an unmitigated failure in his leadership spends more time attacking critics and it just affixes system. Ive seen this firsthand in my five years as a patient volunteer with obt and three years ago i stepped into the role of vice chair of the committee, i thought this would be a great opportunity for me to demonstrate my gratitude by representing and advocating for the patient voice being included ine national policy. More wrong and i observed eunice at best treat patients at tops and out worsted outright lies to us and uses us as a shield of an oversight and reform. You knows knows enough not to lie to congress and relies treats patients instead and wanders those threats. No wonder forbes called a cartel in 1999. For the last year much of my work was consistent to congressional offices to fact check the information. I would like to take the opportunity to do today. For example you knows leadership has created a systematic effort to misrepresent the facts regularly celebrating recent increases in oregon donations is evidence of their success and a well working system. The reality that this growth is driven entirely by the Opioid Epidemic skyrocketing gun deaths and other increases in suicide and fatal car accident. All you knows is celebrating the National Tragedies not evidence of a wellrun system. Arguably worse people who speak out have been bullied, threatened and retaliated against. I personally have been warned that is unhappy with my criticism. And there may be consequences if i continue to speako out. I am a threetime patient, how do they say that to me. Having called by a board member to stop focusing on system outageut and downtime of the tax system. He told me having downtime was not a big deal at all but donors are dead anyway. That comment speaks volumes about the lack of empathy and respect you knows has for donor families. Eunice has failed as a patient i cannot fathom why any tier three opio is allowed to operate. Our lives depend ons this business and seeing that must replace failing opios with the successful ones getting the job done. There is no shortage of evidence that the system is broken. What i hope to convey today the problems are far worse than publicly known in the rock goes far deeper. While we may never know the true tool ofr the gross negligence n the abuse of the contractors we at least know the solutions, cms needs to move urgently for open data opos and they must replace the failing opos without caving to industry pressured and close the dangerous pancreas loopholes that allows opos with misrepresenting the results and jeopardize patient lives. Congress needs to break up the you knows monopoly bypassing 1668 ensuring hhs uses authority to replace you knows as his contractor. Before my last transplant my stfamily and i waited six agonizing years in watching your hearing last august we realize potentially years of the weight were unnecessary. Patients deserve an effective, safe, transparent and equitable Organ Donation system, speaking as a patient and an inside glimpse in the culture and operating model i have 0 confidence that we will ever see improvements if you knows has any role in the transplant system. Thank you. Thank you for your courage to come forward and share with us with information. Chairman, Ranking Member of the committee i serve as the president of life connection of Ohio Organization responsible for soliciting organization and west central ohio. My job is to help as many patients as possible receive lifesaving transplant. Most days i try to do that there continually practice and a scale we need federal policy reforms in the Current System is broken. Opioids have geographic monopolies which is made too many sluggish and complacent, there are apsley no guardrails in place to ensure they are adequately serving patients and many ofg them arent. Yes the centers for medicare and Medicaid Services has never once decertified in opo for standards. It appearsears things may finally start to change. Deregulation 2020 to hold them accountable for the first time in 40 years, three years later cms is not taken the steps to provide opos withhe any guidane on how the rule will be enforced for any indication of the meaningful competition that patients are only served by the best appeals. And filed by hospitals with higher performing appeals now until waiting till 2026. Additionally cms is not taking any apparent steps to close the dangerous loophole which gives opos credit for recovering and creat of that are not translated for research whichns many appeas toh frequently exploit. Evidence by 400 increase place for Research Since a newea role. This means opos letter failing as a central task recovering organs for transplant by recovering one organ of the labeling research. The fact that executives in our industry moral compass not to exploits the loophole is perverse. Im deeply appreciative of this committee for investigating this particular abuse. They should be proved positive of an evident notion opos responding to their structure. Fortunately those are misaligned with what patients need. This is not only regulatory but financial, the opo industry including opo boards with compex of interest which means opos all too often spend taxpayer resources on special interest projects rather than vesting organ recovery. Another issue that deserves urgent attention is safety guardrails theres not a standardized processoc for declaring brain death across the country. The a reality is the quality of care of a donor family receives depends on where in the country that person dies. The fact organ procurement is broken for 40 years speaks directly to the abandonment of patients by the organization at the top ofom the system you kno. Even three years into this committee the investigation of the failures transitioning from an organization skyrocket. It only appears to be doing this to interfere with the business of a potential competitor for a contract showing that once again the system has been hostage by a terrible actor. One that values its own contract by the lives of patients that were meant to serve as the perfect microcosm of the problem, every term eunice cycles and hides the deadly failures to keep its monopoly contract. Hi there are three things the department of health and Human Services needs to do immediately to ensure patients receive safe and highquality organ procurement. One prepared to enforce the opioid without weakening or delaying including the pancreas for research loophole, publishing guidance on how the rule is going too be enforced in requiring the publication of opioid processss data. Two, break up the contract and allow for competition, patients need to be served by the best scenario of technology, logistics, Data Analytics, businessgy development and procs improvement. And three, limited board and financial conflict that exists in our industry that prevent opo was in any contractors from investing their dollars in areas that grow donation and transportation. I commend this committee for introducing legislation to break up the monopoly and i stand ready to work with you in any wayy possible to ensure the bill passes, its only way that the industry will be able to save more patient lives. Thank you. Thank you very much for your testimony as it relates to accountability and competition. We appreciate it very much. Ranking member names and members of the committee my name is raymond lynch, liver and kidney surgeon and a professor of surgery and Public Health at Penn State Health and penn state in hershey, pennsylvania. Thank you for the opportunity to speak today. In my career have a a privilegef recovering organs and more than 200 generous deceased donor patients i performed hundreds of Organ Transplants and the Principal Investigator on nih funded study to enhance procurement for the United States veterans. Im here because congress has the ability to take action. I asked the committee to take concrete steps for organ procurement and transplant safer and more effective for all patients with authentic competition for the contract. I am specialized highly skilled organization and the opportunity to move our transference system into the 21st century. By entering cms and hershey collect and report data on how opo workers provide Clinical Care and entering cms enforces the current opioid without delay. I want to differentiate between Organ Donation which is the decision of the donor patient and their family and organ procurement which is the Clinical Care provided by opioid staff. This is what turns the gift of donation into the usable organs forab transplant. Organ procurement is a clinical specialty is the last medical care that many patients will receive is reimbursed by the federal government and a minister by appeals that are the only provider in the territory to which they hold federal contracts. Patient care delivered by appeals as a lease visible on American Healthcare. I cant tell you how many patients were evaluated by opo workers in the u. S. In 2022. I cannot tell you how many patients were examined or how manyw families are given information about donation or how many times in opo worker showed up to a hospital to do the clinical duty. The lack of information about differviders actually patients is a root cause of the variability in oregon procurement around the country. My research has shown what we call opo performance is a measurable restriction on the five organs that results in the unnecessary deaths of the patients with organ failure. For example the lowest performing around the country had reached the National Median of a sevenyear period there wouldve been 4957 more organ nodonors yielding 11707 additiol organs to translate. Because many appeals operate in a lowquality data environment without oversight almost 5000 patients did not get adequate human care in nearly 12000 other patients did not receive lifesaving transference. Patients carry the burden of the failures in the system. Opo clinical work is currently not visible in benchmark ebola not adequately evaluated and compared. Much of the hidden data about how appeals is known to one entity and that is eunice. The frontline opo providers who administer procurement care are the most dedicated and hardworking instead of offering these workers assistance you knows has advocated for a deadly status quo for fear mongering takes the place of action to address quality of care. Even worse you knows claims increases in oregon donors as a measure of its own success. I have published. Review research that revealed the primary driver of a large portion of these increases to be the Opioid Epidemic between 200s and 201894. 6 of the increase of the number of donors came from patients who died from a a drug related c cause. This does not lessen the value of the donor patients gifts but it does make the appropriation of the tragic death as a Success Story for Government Contractors a lot harder. Eunice is not capable of managing the safe effective and innovative transference system. I know many of us have served to the best of our ability on you knows i direct mydi critical comments to the leadership into the network of cronies. In spite of our best efforts eunice incompetence prevent patients from becoming organ donors or receiving transplants a new network of highly skilled specialist organizations attending to areas of expertise in the management of the opioid contract. I ask you to listen to patients, researchers and frontline healthcare workers at the transplant centers and community hospitals. I ask you to remove this burden from the patient and put a new opt and contractor to work. My patients lives depend on it. Thank you. Doctor, i thank you for your willingness to come forward with this information it is very helpful to w us. Thank you, mr. Chairman, Ranking Member and Committee Members for your bipartisan support and commitment to saving the lives of 100,000 americans waiting today for an organ transplant by passing legislation to break up the deadly federal organ transportationon m monopoly. I am the ceo of the global liver institute. I founded this organization to ensure other patients and their families have the same lifesaving opportunity that i have because we know too many do not. It seems i waited decades to give this testimony and i know only by the grace of god i allowed a life to give it. My lifesaving liver transplant three decades ago i have Organ Donation andin transplant and seeing the system from all angles as a patient, lawyer in a nonprofit executive as the federal government appointee and having served inra several roles as a you know staff and volunteer. I know thousands of unnecessary deaths and so much dysfunction lie squarely with the network for organ squaring and Organ Donation and transplantation monopoly contractor which has held this contract since 1986. I applaud this committees investigation for helping us, all of us here in so many others around the country to pull back the curtain and show every american citizen the correction that lies with eunice. As a patient and a specialist which gave me the policy education communication i even drafted the board minutes away no what the conversations were going on. Years later as a member of the professional Standards Committee or an psc was charged with Patient Safety and generating remediation plans i hope this is finally a place where i can make a difference. As a Senate Finance committee investigationti has revealed eunice executives joke is like putting your p kids artwork, evaluate because of how itlu was created and whether it is well done. This is consistent with my firsthand experience. The joke you knows knowingly leaves patients unprotected. What i experience firsthand the decisions of the industry insiders protecting each other routinely ignoring or excusing dangerous behavior in the patient and he was traumatized. The lawyer in me was wondering at what point would hhs staff do what they were supposed to do and oversee the overseers. When when they step in and act, they never did. We can change that today. You knows has been well aware for decades of severe fatal risk to patients and worked far harder to cover them up then to fix them. There is no reason to believe that you knows has changed since then many the same executives are not only still there but they have been promoted for example the current ceo Noreen Mcbride has been there since 1995. How is that a change agenda . Will opportunity today to create a different future for patientsen and families. It is often planted as complex but a very few simple steps will make the system equitable and elevate the quality and organs available. Congress needs to pass by securing the organ procurement Transportation Network act. Secondly there are acts that cms can take longawaited acts. Some examples are to enforce regulation and to hold opioids accountable for their performance and to do so without caving to the industry lobbying pressure to weaken the standards in any way openly publish opioid process data and all staff interacting with patients have some baseline clinical trainingp or licensure but should not be too much to ask for and require to answer publicly as recorded. Innovation reform will never come from the same people paid lavishly to perpetuate the status quo. They will push back as they always do and the arguments will be made that the changes disruptive. But i assure you nothing is more destructive than dying. My thickest point the doctor stood outside of the icu until my mother only had seven days to live, 210 people are estimated to die in thees next seven days. They will not be saved by empty promises down the line the new senators need to act today. Thank you. All the five of you have presented very powerful testimony there is general consensus, there is consensus among the five of you that we need to do. It really does reinforce our initial thoughts. A legislation that we followed that would open up competition your assessment that the appeals are not being held accountable to tier two and tier three, one is too many. And as a result we dont have outreach in the care meant that we should have in ourhe communities which is causing a peoples lives. S the inability of eunice to modernize you are not alone on that the United States Digital Service found that eunice is incapable of modernization. In the lack of transparency, we dont have the data or the information. And you cant get adequate information as tote where you ae on a list is unacceptable. Anxiety of the issue alone in the pain it causes you and how it affects your health is something that cannot be forward. Movingle normally i have a lot of questions but you really reinforce our views the need for legislation but more importantly the deeper accountability cms needs to enforce the rule that was adopted all that would hold those accountable and thean certifications opening up competition to all of you have talked about being so important that we have. All of that is so important we have the data. Our investigation showed there was transportation delays in the it was down for a period of time and if you are down for a couple of hours if i understand it, ill ask doctor lynch the timing how important to get immediate information. If you delay with the transportation and you cant track where the organ is what impact does a half on a successful transplant. Life and death. Is a direct answer. That happened over and over again. Sampled from the point of view of disease. Essentially lifeanddeath. These are mistakes that are routinely being made all too often. Weve been told the error rates on transportation are higher on the private companies that you can go to the neighborhood. You can track your packages better than you can organs in this country. I guess ill ask a question on transparency. You have all talked about it but that is an area i find incredible that you cannot get the data into information about a lot of this because its not available, is that what im hearing . [inaudible] i tell you we will be working on a dual track one legislation also the accountability in the enforcement of hhs that is the reason why we have the roundtable discussion last week with her son hhs and cms to make it clear we expect enforcement and responsible to make sure we have accountability and we dont have accountability in the Current System. General consensus eunice has failed and we recognize that and that has to be first and foremost. Secondly we need independent boards there moving forward we dont have conflicts forwards. Third transparency, fourth competition and then accountability for those that are not performing. Senator young. Thank you to your testimony enter patients into everyone. This is very helpful in generating additional attention to the issue in helping us affectin change. Since i got involved in the issue and i wasi told time and time again from you knows and hhs somehow management principles didme not apply they could not be applied to this endeavor of procuring organs and matching them up with individuals for lifesaving treatment. This was different. It turns out the basic management principles, you cannot measure it and you cannot manage it and it also applies to the setting. What is different you knows has had a monopoly. We dont allow monopolistic behavior but we allowed it far too long in this area and weve seen it manifests itself and lost lives. Anxious individuals incredible professionals doing the best they can within the system. Doctor lynch you really broken a lot l of ground in measuring wht we can. And indicated what needs to be measured more effectively. I thought it was really compelling when you were talking about a clinical practice that is so open and it seems theres an Incredible Opportunity if we can get the legislation passed to shine light and begin measuring and more effectively managing the entire enterprise. I see the possibilities. And im excited about this. There seems to be overwhelming evidence that are significantly more organs available for donation today then are procured. As you knows made any meaningful attempts to increase the number of organs that areas procured . No you knows did not make any comment on the final rule that would into effect in november 2020 until april of this year. We can remedy that. I was looking at you when i was discussing the individuals who have done yeomans work within the parameters you are given within the ecosystem to try to make improvements. Youve done the life collection of ohio some your previous work what were the most critical implementations, can they be replicated or shared with other appeals. Where im leading with this. Does anyone give youne of engine to share those practices and shouldnt that be the role of the obt in . We actually used a lot of doctor lynchs work in our analysis of life connection when we first got there we built structures to capture the potential of what the data said the potential was. This absolutely can be replicated weve done it twice we did three years in nevada and three years in life connection with our amazing team it can be replicated for sure. What role should the ob tm to facilitate some of the sharing of best practices. To answer your second question, i dont have a venue its probably because i look at the house testimony in 2021 insane the things that shouldve been set a long time ago but im sure all get backlashes for this. I do not have a venue but one thing that we talked about our organization will share any practice, anything that we do with any organization that asked and we dont need credit it just save someones life but no one ever asks, crazy to me. I will have some more questions. Senator. Mr. Chairman thank you so much. I want to thank each of you for being y here we had an insightfl roundtable last week as we started looking att this issue and to tennesseans this is an important issue. I so enjoyed my few moments of conversation with you all. Doctor, i wanted come to you first will we look at a pcm and we look at the security organ act. The deal would strip the nonprofit requirement of the manager of the organ procurement plantation network which would open the door for profiting. From organ procurement and donation. Antinomy this is something that many people really fear especially people that are on a waitlist. I would like to address that and address those concerns and why the act has it right. Advocates unfortunate that people will be afraid of the and be changed in many of the patients are waitlisted for profit w hospital is a part of American Healthcare enter notforprofit entities does not work and there are forprofit hospitals and forprofit transplant centers that do work. Patients dont need to be afraid they need to be afraid of the status quo. We talked about the w pos ad what they could or could not do to follow the guidance on modernization and you talk a little bit about that. When it comes to leveraging some of the modernization efforts and trying to enhance transparency, competition and overall efficiency inn the system what o you see as the most vital steps that should be taken so were moving toward the goal. I think it is mostly around the Data Analytics the Business Development of the organization to be structured in a way that theyey can capture the patientst pacer. And technology for the application. Address the issue of patient privacy. As you look at data in the data that is captured and shared in moves into research. What is the important anonymity and privacy for those patients. Its always going to be important to protect patient data. And its personal theres ways to look at the data appliance that. Its still good to drive process and permit without having concerns of sharing something they should be sharing. Miss mccarthy d1 away on on that. Weenie prediction of her personal data. Rightt now everybody hines behid that or you knows hides behind that notod to share informationn the context of accuracy they made a request for data around habited people on the waiting list of others accurate knowing 40 are inactive. We were told last week we will not be able to see any future will be on that for no less than eight months despite it being a nomination data we were completely told that we cannot do it. Despite the spirit eventually with opportunities to improve. Anything to add on that topic. The responsible use of patient data is healthcare research, that happens in other fields where we do take on the public trust to do that but recognize way toic move forward insane with the stumbling block or an absolute no is simply false. Do you fall in that regard . Think mr. Chairman. The lack of transparency and data makes it difficult for us to understand all of the challenges that we have. I take a look at the waiting list of the number that come off the waiting list within organ and the percentages in the racial communities versus it is much, much lower chance of getting an organ indenture to find out why that is the case. With the and the city of the pos in those regions or eunice issues but i know there is disparity here. We need to do something aboutdi it. You have experience in currently expressing the frustration of being on a waitlist to not procure an organ transplant can you share some of the expenses that you have. In regards of being on a waitlist and gotten to a point where i sit by the phone away and waiting for the chance to get that one call and it never comes. When were battling the state when it comes to interest and waiting on one transplant list to secure an organ in another state. How can i qualify to go to the nextgo team. And insurance discrimination on top of the failures of eunice not calculating my gfr correctly it delayed my process of being listed a whole year sooner for transplant and im stuck on dialysis until i get the transplant in the process with various transplant teams and working with opo in my state ive managed to talk to them about discrimination while still being discriminated against. And when i asked why are black and brown people and not being transplanted, they have no answer other than we need more black donors. My response why do we not see you in the hospitals actually securing organs for us. When it comes down to it Organ Donation is not about the skin tone is about anno individual looking for another chance at life and thats all im asking for a chance. Do you know why its a lower percentage chances for a racial minority to be able to have a transmit . Really does come down to eunice not doing his job of overseeingdo the Organ Donation. We know for many studies lock in brand communities donate organs in the same percentage of the population. It is not a problem of willingness to donate. As a problem as it was starting to discuss and not ensuring the appeals go out into the communities and develop relationships far before the horrible decision made to donate organs of a Family Member. In the transparency of the data in the disparities of the urban we really cant solve the to improve continue this is a topic near and dear for quite some time in advance of any movement on the etf are being racially biased we racist time and again, in disadvantaging black patients. We were ignored and stop talking about and forget about in a complicated topic to address and as a result of the movement there is a lawsuit 27000 black americans to actually make right that was a disadvantage for them. To do either of the two of you want to comment on this. This is a multilayer problem that we need intervention to any layer and we know and the transferring community that they have failed to help us with data and this is why it is so important for cms to acquire the recovery of data that is already been collected as centers and appeals on processes before the waitlist decision or from when somebody becomes an organ donor patient. Absolutely. Senator cortez moscow. Thank you to the chairman and Ranking Members to this important issue and i want to thank you for sharing your story with the subcommittee and its all critical with your experiences across this country and try to fix or address what were hearing was some of the concerns let me follow up with senator cardins questions around s transparency. We have a lack of transference he when it comes to the transferring system and even when information is made available i hear this that is difficult to find and hard to understand with the trust of the complexity of navigating the transplant of network something i believe should be transparent as possible. What role does increase transparency play in impacting the quality and outcomes of the transference system and how can transparency with the transference system is more equitable as you are talking about . Ethically have a tremendous opportunity getting to Specials Organization to help us rebuild trust for patients is going to be a part of it and how were delivering care to various sociodemographicic groups the various geographic areas and all thats going to be sensible and how we help the patients with organ failure and respect the decisions to become an organ donor patient for the people and how we make the best and most efficient use of all the resources that were have. Let me off the panel and general and procurement of implanted practices to the success of the region becoming highperforming opo however, recognize many are failing to meet important measures of performance and quite friendly thats what we need to move forward with the muchneeded changes and this is open to the panelists. From your perspective is there a balance to consider here do we believe we should maintain and promote the success while moving forward with broader reform . Nothing now would contemplate and disrupt or disallow those who are performing well to continuing to performing well. We would have more opos were operating at the level and Leadership Matters it is so important to the point you made about u equity as well to ensure that every american wherever they are in the country had the same chance at a lifesaving transplant in the same respect for the donation as well no matter where they live and you cant do that without the legislation the changes that were asking for today. I notice you had mentioned the improvements of the opioid on that as well and curious about your comment. If you look at the data you can see his trending and taking this seriously and you remove it for research youho can see whose improvement is l genuine. I dont think giving anybody more time that the behavior is going to change, they are who they are i think w the evidences not a coincidence that allows ceos retireth the moment the rue of the balance because it got hardtu that is a lack of leadership and stuff gets hard you lead your organization through it. I dont think behaviors are going to change. The easy way to make your Organ Procurement Organization look better was to take advantage of the research simple and i said in my opening testimony that is absolute perverse that somebody would actually do that and be in a position of leadership. And their board not act on that. That is extremely troubling. And we should not give an opportunity to move tears because they can do that and exploit it even further on a Larger Population base. Ms. Mccarthy did you have anything to add. The easy way to make your Organ Procurement Organization look better was to uh take advantage of this pancreas or research loophole. As i said in my opening testimony, thats absolutely perverse and that someone would actually do that and be in a position of leadership and their board not act on that. Thats extremely troubling. We shouldnt give them an opportunity to move tiers because they can do that and then exploit it even further on a Larger Population base. Thank you. Ms. Mccarthy, did you have anything to add . As i said in my Opening Statement as well as a patient . I, i dont, i cannot fathom why we have any of these tier three op os that are being allowed to exist for me. I would like to see them closed down immediately. Contract the from receiving lifesaving organs. This, if anything, highlights to me the urgent need for reform. In the wake of this horrible discovery, are you aware if therest was any attempt to notiy you that your status had changed . Senator, to answer your question, no. They never contacted me nor the hospital to say with the actual problem was that happened. And i was never apologized to. So i ended up having to talk to the actual family who wanted to donate to me. A clerical error . Yes, sir. Clerical errors happen. It was anyone held accountable . No, sir. All i was told is sometimes this may happen, but we will do what we can Going Forward to make sure it doesnt happen to another patient, and thats all i was told about the situation and that was from an executive director. This goes back to basic business principles when there are important tasks to be done there are mechanisms that can be put in place administratively to highly minimize the number of clerical errors that could occur for example. Ms. Mccarthy, is there any policy about when and how to notify patients of this important status change from active to inactive . To the best of my knowledge, there is a policy we are to be told of any changes in the status by u. S. Mail letter. The patient has been on the list three times and many patients i talked to as well. None of us haveno recollection f receiving the letters. Aspa recently as august, we spet four hours doing a Design Thinking workshop about how to solve the problem using technology. I asked as recently as last week with the outcome was and was told by the leadership they are not allowed to tell me but im going to really like it. As ive done more to gain, there isis no movement on that. So, theyve come up with all sorts of ways countless and supposed, yes. The highest degree of respect. Youre not populated with nasa engineers and, well maybe you are [laughter] nonetheless i that i could sit down and probably come up with some guardrails here. So, but its not my job. Today its the job of unos. If anyone watching this proceeding has theirs, they wont be doing this that long. God willing. Ive got about a minute left, and i want to make use of our time together so doctor lynch, what does cms need to do to appropriately enforce the 20200 . Po rule . They need to move forward with this as quickly as possible, not dilute and delay but to make it less effective. What do they need in order to improve performance for tier two and three . They need honesty when they had that ability to get that to them, its important to reiterate and answer to senator cortez musto. Theres no requirement under the regulation y that any zero po go out of business. They are being judged against what is being currently performed by their peers and so this is something that they can achieve if they look and see whats happening to their next. Thank you. Weve got some work to do up here and within this body and we owe that to all of you to keep pressing hard. Chairman . Justes a followup. Senator cortez musto, just a followup on senator youngs point. You responded, doctor lynch, to enforce the rule, and we agree with you. That means there should be considerations of decertification. If they are not performing at a level that is acceptable. But, you also have to have the service is available in a community, so you need to have competition. You need to have the ability to not just decertify, but make sure theres access to transplant services in the community. So, we dont want to cms to hide behind that issu and say they are never going to enforce this rule, and i think thats our major concern. If we find a reluctance the right now to pull the decertification trigger which may in fact be necessary. I thinkt thats critical, ad i think that having this legislation go through and getting the responsible contractor or set of contractors will take some of that burden from you. So with all due respect, i dont want us to have to keep coming back to the principal. This is something we should be figuring out in our own immunity in thean system and with of the right oversight and contractors, we can. We agree completely with the vet. Im justit pointing out i think the hurdle is not as we havent yet convinced cms to be very firm about these dates and to have accountability if there is not the performance and improvements that are expected under the role that was issued. The second point, senator, your plaintiff your point, you found out that you were active on the list and were able to get it corrected . But im equally certain that thereve been other cases similar to yours where the individual did not know to correct it and that person may have ended up deceased. Delay equals life and death. So, we are dealing with an urgent issue. The chairman said that over and over again. This is urgent. Every day we are losing people. And its just extremely upsetting and unacceptable to know that a clerical error that should be able to be easily caught by Technology Available today would have prevented that from happening or about tracking of transportation, which technology is pretty sophisticated today, why thats not being utilized as a result its very possible that while, we know lives could haveas been saved as a result of those type of mistakes. Youve heard chairman wyden and senator grassley and senator young and myself as well as the other members of the committee make it very clear that we intend to treat this with urgency. Your testimonies have been powerful, ass i said before. We sit through a lot of hearings. You have really motivated us in your testimony. All five of you have been very effective. We know its not easy for you to be here, professionally its not easy. We know that its uncomfortable to go through some of these stories, but as i said earlier, when we look at numbers yes we are motivated by numbers, but we are really motivated to action by seeing the people that are directly impactedpo by the policies that we have here. So i just really want to underscore again our thanks for your participation in this hearing. It is one that reinforces what we want to get done but now i think gives us an additional impetus to move as quickly as we possibly can. Cwe are also working with chairman sanders of the help committee because we recognize that we have two committees in regards to these issues and senator sanders has expressed strong support for the efforts that we are committed to doing. I know there are a couple of theirbe members that want to ask questions that are in route. Im not going to hold up any updates . [inaudible] we are going to be patient for a few minutes if you dont mind. We have a couple other members who really want to weigh in. This is an important subject. I want to make sure members have the chance to express their views. So if everybody will be patient, we will just stay in a quiet moment to reflect and we will be back very shortly. [inaudible conversations] as i was saying, theres a lot of interest with members of the committee on the subject. Senator langford has been verye active in these discussions, and a senator langford is ready, i willll call on you to inquire. Thank you very much. I was literally running back and forth dealing with pharmacy benefiter management stuff some next week as well. I appreciate your engagement in the help on this. I o need help and clarificationn this and it deals with of the kidneys light of the transplants. 1 ou of the federal budget goes towards this issue. Its an enormous amount of money. There seems to be challenges here in multiple areas but forgetting kidneys to people in the process actually doing the transplant, other treatments for all the Kidney Diseases and a whole multitude of things for diabetics and others, theres a lot of challenges, help unpack this for me and what am i missing on this and what can be done . A lot of the incentives just dont line up, so from the eo po cited has a lot to do with what are you going after, what cases, ahow are you pursuing the cases in the organization in a way thator you can ask these familis to get the donation and getting the kidneys for the transplant. I think the way things have changed in terms of financial incentive and things like that i think transplant centers are incentivized differently, so i think they have their own challenges. Trying to push or increase the transplant i think and correct me, the transplant centers are more conservative. We are lucky in ohio that we have one of the best programs in terms of the wait list same things in the countryte but maye doctor lynch can lien on this weigh in on this. Renal failure is a crisis in america as a result of the epidemic of diabetes and organ failure. The difference in the incentives is ideally there will be as many as possible. They are incentivized to do as manyze transplants as possible t is also measured we need to make sure that there is a continuous chain of custody in these incentives so that they do align to take the best care of the donory patients we get every organ recovered and get it to the recipient to make the best use of that and make sure the centers are incentivized to take what would be considered a risk, you risk your patient and organ to give them that chance at a longer and better life. Tell me what that would mean as far as the incentive shift. I understand what youre saying but practically what would that look like . Ideally with better contractors as a result of this legislation we would have a contractor that would measure everything looking at the pre transplant listing policies and looking at our donor evaluation policies and who they are seeing is donor patients. What we would do is make sure every organ that is recovered as expedited to the best possible recipient and that thein centers are able to remain competitive so that they are not routinely being pushed down the list were preempted to maintain access for the patient. So at this point, you are assuming or may be rightfully so that theres some individuals that could but because they are considered high risk, they are kind of set aside. Yes sir. If we were hypothetically to measure centers only on the pre transplant or opposed transplant mortality would would make them conservative and they wouldnt list people at a higher risk of not making it transplant so dying before or not surviving as long after that they deserve the chance if they are able to get with those options. You are nodding your head over here. This is an area that weve stepped forward and as well allowing patients an opportunity to have a voice to be included in thosevo decisions. Some areec more willing to takea more at risk organ in exchange for not waiting so definitely something that they would have. Anyone else want to comment . I would say there are two ways. I think youre asking week reduce the cost. There are two ways of the work were doing here today to do that. If you have fewer people who need, who run into renal failure, you have to focus on, and i know they have a hard time scoring prevention so we have to find a way to be able to i know weve been discussing other things to reduce obesity. Most patients are not controlled for their hypertension particularly black and brown patients. We have more coming from oklahoma telling us of an issue in native communities of beinges able to deal with of these issues that drive the need for the transplant. The point of incentive, its to keep people on dialysis not to transplant. And so this program would be relieved if we had on both ends people being swiftly moved to transplant instead of languishing on dialysis and preventing thers drivers of thought renal failure in the first place. Thats extremely helpful to be able to walk through, because we do have to fix the incentives and of the process pushing towards dialysis long term rather than trying to get the opportunity to have a Higher Quality of life. Thank you. Senator warren. Thank you, mr. Chairman. The organ procurement and Transplantation Network weve established by the federal government to manage the u. S. Organ Donation Program and today opt and is run by the United Network of organ sharing or unos. Last year the Senate Finance committee released the findings of an investigation into unos the revealed off the system is deeply broken. Organs are getting lostst in transit, infected organs are being transplanted into patients, and of the individuals responsible for running the system are riddled with conflicts of interest. So, lets talk about one of these conflicts. Federal law requires opt in to have a board of directors. Makes sense. Most organizations are boarded withst governors when working properly that serve as a check on the organizations performance and management. Ms. Mccarthy, you are a transplant patient your soul, and you serve as vice chair of the Patient Affairs committee. So, you see up close the governance of the opt and. Tell me is there any difference in membership between unos board of directors and the optn board of directors . They are the same people. They are identical. And right now that means the same people are in charge of overseeing how well the contractor runs the Organ Donation system and of those arr the same people who are actually running. So, ms. Mccarthy, how does this government structure affect the integrity of the organ transplant system . I would argue theres no m,integrity of the system, thers no accountability, theres no transparency and sadly the cost is people are dying every day. So youre telling me nobody holds themselves accountable. This is an identity of interest. My view on this is that the changes are longoverdue and i support the reforms to the federal agency that oversees the opt end and it was announced earlier this year we are going to move in this direction. I also join chairman wyden and introducing legislation to give additional Statutory Authority toso strengthen government oversight. And among the many reforms, the legislation would support the proposal to break up the opt and monopoly contract into multiple smaller contracts which would allow competition and the best vendors in the business to manage different parts of the transplant Network Operation that means hiring it experts to do the work. They are pushing to have the government limit eligibility only to nonprofit vendors that have worked in the past on Organ Donation. Meaning, for instance, that the it company that is hired to runh Computer Systems would have had to have worked on in Organ Transplant Network in the past and be a nonprofit. So, ms. Mccarthy the requirement unos wants would seem to make it so that only one organization could apply for the new contract. Would you have any concerns if they awarded part of the contractrn to an entity that dos not fit that narrow description . Senator, absolutely not. Quite the contrary. We need to diversity so we can have the best in class serving patients. Im glad to hear this. I think what we are seeing here is nothing more than unos trying to protect itsot monopoly. The reforms that weve proposed are a common sense steps that everyone should be able to agree on. Right now congress has an opportunity to root out corruption in the system but if we dont act before the current contract expires, we wont have another shot for years. Patients have waited long enough, congress should pass the organ procurement andga transplt network act and do it without delay. Thank you all for being here again for your work. Thank you mr. Chairman. We can play, and we have sensed the urgency to act immediately. As doctor lynch pointed out, delaying means life and death, so thank you very much for your comments. Once again i want to thank all five of the witnesses. Its been an extremely important hearing. And it reinforces i think our desire to move quickly to open up competition to provide transparency, to have accountability, all of the above that weve talked about before and to have a much sounder basis for finding out whether there is anng equitable system and sufficient getting the maximum number of transplants to save lives but also to make sure that its l done in an equitable and fair way. All of that requires us to act on transparency, accountability teand competition which we inted to do. Thank you all for your testimony and with the outcome of the subcommittee hearing will be adjourned. [inaudible conversations] [inaudible conversations] here or right here or way out in the middle of anywhere you should have access to past reliable internet. Thats why we are leading the way