5 month old with rare disease needs liver donor mxp vpx_00005720.jpg
Without a liver donor, this baby only has weeks to live
01:12 - Source: HLN

Editor’s Note: Alvin E. Roth, a professor at Stanford University, won the 2012 Nobel Prize in economics. Greg Segal is the co-founder of Organize, a patient group who previously served as Innovator in Residence in the Office of the Secretary of the US Department of Health and Human Services. The views expressed here are the authors’. Read more opinion on CNN.

CNN  — 

On Wednesday, President Donald Trump signed an executive order that will transform kidney care in the United States. Two cornerstones of this wide-ranging initiative include critical changes to our organ donation system that can save thousands of lives each year – and billions in taxpayer dollars.

Alvin E. Roth
Greg Segal

With 33 people dying each day for lack of an organ, according to data analyzed by the Washington Post, this system needs to work better for patients. The demand for organs far outstrips the supply, leading to long waiting lists, huge bills for medical interventions like dialysis, and anguished families.

The changes enacted by the Trump administration’s order will not only increase the number of available organs, they will also hold accountable the organizations responsible for making sure organs get to the recipients who desperately need them.

The executive order charges the Department of Health and Human Services (HHS) to support living organ donors by covering certain relevant expenses. This is in the interest of both transplant patients and taxpayers, because the costs associated with dialysis for patients in need of a transplant dwarf those of covering living donors’ expenses. The order also directs HHS to require more accountability for the government contractors tasked with leading organ recovery efforts by installing more transparent performance metrics by which to evaluate them.

Here is some important background: According to the Health Resources and Services Administration, there are almost 115,000 patients on the waiting list for organ transplants, more than 80% of whom need a kidney. The chief obstacle is a shortage of transplantable organs. Many types of organs can only come from deceased donors, but kidneys are special: a healthy person has two kidneys and can remain healthy with one.

Last year, according to the United Network for Organ Sharing (UNOS), there were nearly 15,000 kidney transplants from deceased donors, and 6,442 from living donors – many of whom spent thousands of dollars out of pocket to offer life-saving help to recipients. That’s why the Trump administration’s move today to cover costs for living donors is so important.

One of us serves as an advisor to the National Living Donation Assistance Center, the federally-funded program that defrays some of the expenses of certain living donors qualifying for financial assistance. But regulations constrain how much and to whom this assistance can be provided.

The executive order charts a path to relax these constraints, so that donors do not need to suffer financially – in terms of travel, child care, lost wages and so on – from the decision to donate an organ.

This change can help thousands of patients each year in need of a liver transplant, too. Just as kidneys are special, livers can regenerate, allowing for living donation of partial livers. With kidney and liver patients making up 95% of the organ waiting list, according to HRSA data, this reform can remove a significant barrier to transplantation.

The Trump administration’s order also addresses a long-standing problem with how organs are recovered from deceased donors. Research supported by Arnold Ventures, which one of us helped lead, shows that the 58 government-granted monopolies called Organ Procurement Organizations (OPOs), who work with donors’ next of kin to explore donation options, fail to recover a substantial number of organs each year.

This research shows OPO inefficiency contributes to as many as 28,000 organs not recovered for transplant each year, including 17,000 kidneys, almost 8,000 livers, 1,500 hearts, and 1,500 lungs. Even recovering a fraction of this potential would transform what is possible for patients.

While there are some strong OPOs, performance across the industry ranges widely, which means that thousands of organs are left unrecovered while waiting lists grow longer. In our estimation, however, the biggest barrier to changing OPO practices has been data; the government has allowed OPOs to self-interpret and self-report their performance metrics. Unsurprisingly, given this dynamic, no OPO has ever lost its government certification.

To ensure accountability, the executive order requires that HHS create a new performance metric for OPOs. Existing data from the Centers for Disease Control and Prevention can meet this requirement without additional reporting burden – it just has not been used before since the existing regulation lets OPOs write their own report cards.

And with more available organs for transplantation, taxpayers will spend less on Medicare; patients on dialysis cost $34 billion annually, and kidney disease more broadly costs $113 billion per year, as Health and Human Services Secretary Alex Azar recently noted. That’s $1 of every $5 that Medicare spends, more than the entire budgets of the National Institutes of Health ($39 billion), the Department of Homeland Security ($44 billion), and NASA ($21.5 billion) combined.

We may live to see a day when transplantation of human organs is no longer needed because we will have learned how to grow new organs from stem cells or have found cures for diseases that cause organ failure. But for everyone who needs a transplant today, fixing the nation’s organ donation system is the only thing that can save their lives now.

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    The Trump administration has a chance to score a win for both patients and taxpayers alike by ensuring that the critical reforms announced today are implemented this year. Lives depend on it.