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COVID-19 caused 21% excess of respiratory infections last winter, analysis finds

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Anna Shackley forced to retire aged 22 because of heart condition

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Anna Shackley, one of Britain's most talented young cyclists, has been forced to retire aged 22 because of heart issues.

The Scot is the reigning British Under-23 road race champion and won bronze in the under-23 event at last year's World Championships in Glasgow.

She was diagnosed with cardiac arrhythmia in January and after further tests has been advised to retire.

"To say I'm devastated would be a huge understatement," Shackley said.

"Cycling has been my entire life for as long as I can remember and unfortunately it has come to a premature ending."

Shackley competed for Team GB at the Tokyo Olympics as a 20-year-old and won under-23 silver at the European Championships.

Further notable results include finishing 13th in the general classification at the Giro d'Italia and seventh overall at the Tour de Romandie.

"I had many plans and ambitions for the future and that being taken away from me has been very hard," she said.

"However, I count myself lucky to have had the unique experience of being a professional in [my] hobby. Wee Anna would never have believed that."

Danny Stam, sports manager for Shackley's SD Worx-Protime team, said: "We are very sorry to see Anna's cycling career end like this.

"She was one of the bigger talents in the women's peloton.

"We saw in recent years that she was making good progress and we believed she could grow to the world top."

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How to Stop Losing 17,500 Kidneys

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If you're an organ donor in the U.S., there's a 25% chance your kidney ends up in the trash. Today's guests, Jennifer Erickson and Greg Segal, argue a government-enabled monopoly is the culprit.

We spoke with Erickson and Segal about how they successfully advocated for major fixes to the organ donation network. Erickson is a Senior Fellow with the Federation of American Scientists and former Assistant Director of Innovation for Growth in the White House Office of Science and Technology Policy. Segal is the founder and CEO of Organize, a nonprofit patient advocacy group. 

What you’ll learn:

  • Why are 28,000 organs going untransplanted annually?

  • Why does 1% of the federal budget go to dialysis?

  • Why has a sole bidder run the U.S. transplant system for decades?

[Thanks to Rita Sokolova for her judicious transcript edits.]


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Tell me about organs.

Jennifer Erickson: What I will say out of the gate about the organ waiting list is that it alternatingly makes me want to turn over the table, it makes me so angry because it's unnecessary. But then also the great thing is, this is actually a healthcare problem that we can fix. The problem, it turns out, is actually the federal contractors. 

So who are the contractors? First, there are 55 local contractors. These are called organ procurement organizations or OPOs. Some have a state as their donation service area, some are across part of a state. 

Congress set up a monopoly contract in the eighties, called the Organ Procurement Transplantation Network, or OPTN. This national contract has only ever been held by one contractor, the United Network for Organ Sharing. If you've seen Grey's Anatomy or ER and they said “I need a heart, get UNOS on the phone,” that's UNOS. 

Just one example again of how bad it is: Greg and I recently got a whistleblower call in the last heat wave. Someone took a liver, a human liver that a family said yes to on the worst day of their life because a loved one died in an accident, and left it at the wrong hospital’s cargo bay in 90 degree heat, and no one noticed for an hour and a half. 

The OPTN has a board to set policy. Who's on the board right now? The current board, the board members of the nation's Organ Procurement Transplantation Network, were until recently the exact same board members for the contractor, UNOS. So, literally, they would meet on a Sunday as OPTN board members and then on a Monday as UNOS board members.

To say it's a conflict is an understatement: it's a Venn diagram that just is one circle. It's really, really bad. So as a first thing, this legacy board is still deciding policy for the nation. There are ongoing, bipartisan Congressional investigations into conflicts of interest and corruption.

The tech is so bad. The United States Digital Service found 17 days of downtime in recent years. Until recently, the algorithm that was protecting all organ donor patient information in the country, so STI status, mental health, every physical history, was from 1996. 

This is a fixable problem: it’s about the contractor, supply chain, it’s logistics, transparency. Congress unanimously passed a bill in July. The only other thing that passed unanimously that day was Tony Bennett Day.

Senator Todd Young, a Republican from Indiana, who lost a friend waiting for a heart, has done a lot of oversight into OPOs, including the OPO in Indiana. And in one year of that oversight — this has been peer reviewed and published — organ donation in the state of Indiana went up by 44 percent. It went up by 44 percent because they approached 57 percent more families. What in the hell was that government contractor doing before Todd Young started asking questions?

You mentioned the specific language of the law solidified UNOS as the sole bidder for the OPTN contract. What was that exact language?

JE: The predecessor organization to UNOS lobbied heavily to insert language into the National Organ Transplant Act (NOTA) that stipulated that, to compete for this contract, a contractor has to be an independent nonprofit with expertise in organ donation and transplantation. That phrase has always been interpreted to mean UNOS. In 2018, the last time there was an open contracting cycle, you had to have three years of experience to even submit a bid to the federal government. Now, that might sound sensible until you realize that there’s a national monopoly and only one group has ever had three years of experience. So no one else applied. 

The United States Digital Service produced a report called Lives are at Stake, which is not a normal name for a government report. It's a way of writing it in flashing red letters. They identified that phrase in NOTA as one that has restricted competition across decades, and in the summer of 2023, both the Senate and the House unanimously passed the Securing the U.S. Organ Procurement and Transplantation Network Act, which removed it. President Biden signed that into law in September. 

It was surprising even to Greg and me how this news broke through in the national media, but I think it was because Americans inherently know that monopolies are bad and no one, unless you're in this very particular world of organ donation, was aware that there was a national organ monopoly and that they were funding as taxpayers, and which has spectacularly failed patients. 

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A lot of Americans are affected by the organ donation system every year. Help me understand why this successful bipartisan push didn't happen 10 years earlier. 

JE: I think one really important thing to know is that these organ donation contractors are funded by the taxpayer. Organ procurement is cost reimbursed, which means that pretty much anything organ procurement organizations pay for gets reimbursed by readers, by taxpayers. 

Detailed map of governance and oversight in the organ donation process
From Organ Donation Reform

That’s how you end up with organ contractor executives flying around on private jets and going to Sonoma wine retreats while the Centers for Medicare & Medicaid Services (CMS) say they're failing basic government performance metrics. If you're really worried about which vineyard you take your board to, you're probably not spending a ton of time thinking about how to staff underserved hospitals in the middle of the night. 

I think the system has stayed broken for so long because they had budgets to market themselves. There’s a halo effect here: 95% of Americans support organ donation. That literally polls higher than puppies and ice cream. So there's this tremendous amount of goodwill that the organ contractors not only benefit from, but actively pay to perpetuate through good news stories, by sponsoring the Rose Bowl and professional sports teams. And despite wild executive perks and abuse of funds, these contractors are nominally nonprofits. 

So no one was ever looking under the hood. And I really want to give credit to Greg here. When I was in the Obama administration in the White House Office of Science and Technology Policy, Greg’s organization brought us data showing 28,000 organs going unrecovered every year, showing which organs were going unrecovered in which states. That put it into technicolor for us that we had not only a preventable, outrageous tragedy and a responsibility to actually fix it and prevent it. Greg and the researchers that he worked with showed that there are 17,500 kidneys, 7,500 livers, 1,500 hearts, and 1,500 lungs that go untransplanted every year from potential American organ donors. For scale, that means the United States does not need to have a waiting list for livers, hearts, or lungs within three years, and the kidney waiting list should come way down. That data convinced not only the Obama administration, but also the Trump administration. This reform movement has now crossed three administrations, and that almost never happens.

Greg, where did you get that data? How was it generated and understood to the point where you could take it to the White House? 

Greg Segal: So our organization, Organize, was awarded the Innovator in Residence position in the secretary's office of the U.S. Department of Health and Human Services (HHS) from 2015 to 2016. We were still technically a non-governmental nonprofit, but in some sense, we were embedded within HHS. 

We had different levels of data access and we used ICD-9 codes, which have since been revised to ICD-10, to paint an objective picture of how well, or in many cases, how poorly, these industry stakeholders were performing. Many people probably directionally knew that something was amiss in this system, but it was very opaque. Before having this data, it was hard to articulate what was going on to members of Congress, and you sometimes felt like you were Christopher Lloyd from Back to the Future, where you're just the forensic accountant or crazy person in the office.

Get more specific for me on that data collection; some of our readers are nerds for this stuff. Can you access that as a private citizen, or did being embedded as Innovator-in-Residence unlock it? 

GS: We could access it as private citizens, but HHS employees really helped us understand why things were set up the way that they were, how things were coded, and which one of our ten ideas might actually be implementable. As Jennifer always says, government works by analogy. We had so many different ideas, and then civil servants would very soberly explain to us why nine of them were just completely unfeasible. When you're left with the one idea, that does not guarantee that it will happen. We then needed help understanding the ten different analogous projects that have happened in the last ten years to figure out how to implement ours.

So we used government data, and we validated it with some external data voluntarily shared from industry to verify that what we were doing was directionally correct with what was happening in industry. 

JE: One of the things that really helped was the specificity. There had previously been federally funded research showing that in the United States as few as one in five organ donors were having their organs recovered. So four in five were not, right? 

We knew that there was a gap between the huge support for organ donation and what was actually happening. What I’ve learned is that if there’s a big national problem, the government often does exactly the wrong thing. It punts, it does another big study, a consensus conference. 

What you really need to understand is the data: what is happening in the state of Virginia, what's happening across Texas or California. There are 55 of these organ procurement organizations, and we found a 470% variability in recovery between the top performers and the lowest performers. You need to ask, “What are the top performers doing that the bottom performers are not?” That really helps you get specific and follow the data to find problems you can solve.

Talk to me a little bit about the 17,500 untransplanted kidneys. Where are those kidneys, what is happening to them?

JE: So keep in mind, there's a huge generosity of spirit and national agreement about organ donation. Most people, myself included before I started this work, think of organ donation as, “Did you tick a box at the DMV when you got a driver's license?” And that really isn't the story of what happens. 

In the United States, only 2-3% percent of deaths are organ donation-eligible. That includes car and motorcycle accidents, overdoses, strokes, and traumas: something that means a patient isn't going to make it, but up to eight of their organs might. When someone is dying in an organ donation-eligible way, that hospital calls the organ procurement organization they're assigned to. That OPO is supposed to turn up to every potential case in a timely and compassionate way and have one of two conversations with the family: 

“Smith family, I'm so sorry for your loss. Jane was a registered organ donor. We'd like to proceed with her wishes.” 

Or, “Smith family, I’m so sorry for your loss. Jane seemed like a wonderful person. Can we talk to you about organ donation?” 

Keep in mind that 95% of Americans support organ donation. My older brother is a registered organ donor, and if, God forbid, something happened to him, and someone approached me at the hospital in a timely and compassionate way, I would consent to organ donation. If they do not approach me, then I cannot consent. If they do not show up at the hospital, even if he ticked the box at the DMV, those organs cannot be recovered. 

Another problem is that when they do show up, OPOs are not required to have basic standards of clinical care. So another way in which organs are lost is medical mistakes.

Organs are literally lost and damaged in transit every single week. The OPTN contractor is 15 times more likely to lose or damage an organ in transit than an airline is a suitcase. That should be shocking. Think about a donor family agreeing to organ donation on the worst day of their life, and what it means if their loved one's kidney gets left on the airport counter in Atlanta, or gets delayed and then thrown in the trash in another part of the country. And then, of course, what that means to one of the 100,000 Americans waiting to get that call for a lifesaving transplant. 

GS: I’ll also share a lesson on advocacy. There's a rare genetic condition in my family which causes heart failure. My dad and aunt had heart transplants, another aunt died waiting for her transplant. I spent a lot of time running around D.C., talking to people about the organ donation system, and had a lot of sympathetic meetings where people heard me out. I think I convinced them that I was right, and then they moved on to the next meeting and never thought about me again. 

Then I realized that kidneys are not only just as important as hearts, but far more expensive to taxpayers. If you need a kidney, you are almost certainly waiting on dialysis, which is then paid for by Medicare. In 2019, treatment for kidney failure cost Medicare $36 billion — it might be higher now, and is certainly higher if you include Medicaid numbers and VA numbers. 

One percent of the entire federal budget goes to dialysis. So we started foregrounding kidneys in our advocacy, but reform to the kidney donation system, at least the deceased donation system, is a vehicle for the same reforms for all of the organ categories. After we started talking about the importance of helping people get kidney transplants, within a year or two, there was a presidential directive on reforming the organ donation system that rode on the Executive Order on Advancing American Kidney Health.

I was so blinded by telling my story that I didn't think for a while about what's actually going to resonate most with a person across the table from me. And in D.C., often that is not just who has the most sympathetic issue, but whose issue has a pay-for to it. 

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Why are kidneys eligible for cost reimbursement? 

JE: There are two areas of healthcare that are still under cost reimbursement, which means the taxpayer funds the vast majority of the system: critical access hospitals and organ procurement. As Greg alluded to, because of some amazing patient advocacy in the 1970s, kidneys have a unique classification and end-stage renal disease is the only major disease that qualifies you for Medicare regardless of age. In 1971, a patient was dialyzed on the floor of Congress, and Congress decided they needed to help patients on dialysis and made an exception so that disease could be covered by Medicare. 

So if we can get patients a kidney transplant, not only can they live a much better quality of life, which is what Greg and I care about, we can also save the taxpayer up to $1.5 million per patient in foregone dialysis. It's really rare in healthcare that patient and taxpayer interests are so closely aligned.

On paper, the Health Resources Services Administration (HRSA) and the Centers for Medicare and Medicaid Services (CMS) were responsible for oversight for more than a generation, right? How did the OPO executives get away with Napa Valley field trips during this time? 

JE: I think there were a few things. One is, you actually have two different types of contractors. The national contractor, OPTN, was supposed to be overseen by HRSA, which is one agency of HHS. The dozens of local OPOs are supposed to be overseen by Centers for Medicare & Medicaid Services (CMS). So you already had this division of oversight, and both agencies would say, “We have this government contractor — UNOS — that is supposed to be looking out over the whole system.” 

Here I'll quote Senator Chuck Grassley, who’s been investigating this since 2005. He said, “Asking one contractor to look out for dozens of others is like asking the fox to guard the chicken house.” It's fundamentally a failed model. It has left patients in a terrible and deadly position. The Lives are at Stake report details a continuous erosion of leverage from the government through the contracting cycles. 

For example, the report says that UNOS threatened to walk away and operate the U.S. transplant system outside the contract, which would be incredibly bad faith behavior. Government isn't a monolith, but I think some people in government perhaps thought they didn’t have alternatives. Keep in mind that OPOs are on four-year contracting cycles, and UNOS, the OPTN, has been on five-year contracting cycles. So all these contractors have had to do is withstand scrutiny during a contracting period, and then they're in for four or five more years.

A Forbes piece in 1999 called UNOS a “cartel”, and “the federal monopoly that's chilling the supply of transplantable organs and letting Americans who need them die needlessly.” Donna Shalala, who was the Secretary of HHS under President Bill Clinton, called out UNOS misinformation in a Congressional hearing back in 1998 and called for competition in the field. The then-leader of HRSA called for an end to the stranglehold of the UNOS monopoly, and yet 25 years later, UNOS is still the monopoly contractor in charge. I think people of goodwill tried to introduce reform, but UNOS still managed to keep the contract.

Was there any useful pressure from doctors or from hospitals on this issue? I'm imagining that if you're a surgeon waiting for a transplant, you don't like that the OPOs are leaving it by the front door on a hot day. 

JE: There have been some tremendous surgeons who have spoken up, and three have testified before three different congressional hearings in recent years, saying that too many of their patients are dying, and the system has to be fixed. There's also been investigative reporting about UNOS threatening whistleblowers. I'm grateful for voices for reform and I just want to acknowledge that this is why the government has to act.

You mentioned that HHS Secretary Donna Shalala called for competition and an end to the stranglehold UNOS had on the system. Help me understand, didn't HRSA have some authority here, rather than simply saying there should be competition? Was that authority used?

JE: It did, but there were two problems. One, when it came to contracting, there was often a strict interpretation of that phrase in NOTA, which kept constraining competition.

I would also say that there are other oversight responsibilities that both HRSA and CMS should use and never have. The technology of UNOS is deeply failing and antiquated — for hours at a time, it will shut down and no organs across the country can be matched. 

Organs are all on a clock, right? There's only so much cold ischemic time, or time outside the body, they can have. An astounding one out of every four kidneys that's recovered from a generous American organ donor is thrown in the trash. The federal government has never held UNOS or any OPOs accountable for that. 

Until recent data-driven regulation passed, CMS could not pull a contract from a failing OPO. They tried to decertify the Arkansas OPO in 1999, but ultimately lost in court because the regulation was written so badly, yet CMS didn't update it for 21 years until 2020. That update, which passed under both President Trump and President Biden, was the first big win for patient advocates. OPOs will be held accountable for their performance this year. Between that and the Securing the U.S. OTPN Act that removed the restrictive phrase that propped up the national organ monopoly, we’re hoping that 2024 is a different year.

GS: If you'll indulge me, I’ll add one other quick piece of context from 1999, not just as a history lesson, but because it is fiercely relevant now.

We like history lessons too. 

GS: It’s one thing for HRSA to say that we need more competition back in 1999, but government contracting doesn’t let them just pick whoever they want and bet on them. HRSA can only respond to credible bids that meet contracting requirements. The Forbes report mentioned that UNOS was interfering with other competitors’ bids, but even if everyone knew that, HRSA’s hands would still have been tied.

The March 2023 Senate Finance Committee investigation dug up a bunch of dirt, including emails in which executives joked that their patient safety review board was like putting your kids’ artwork up at home: “you value it because of how it was created rather than whether it's well done.” 

Talk to me about how you worked with Senate offices.

JE: I mentioned how Greg brought this issue to the White House when I was in the Obama administration. After the transition in January 2017, we brought it to Alex Azar, who was the Secretary of HHS. [Statecraft interviewed Secretary Azar on “How to Replicate Operation Warp Speed.”] Greg, Secretary Azar, and I all lost relatives to organ failure, so we were all connected in this rather unfortunate way. We said, “We want to show you everything we started, every place that we failed and where there's still work to do. This is not a political issue.” 

This is a rare bipartisan issue that's crossed multiple administrations. We had similar conversations with Congress members and their staffs, and as I said, Senator Chuck Grassley has done hero’s work highlighting problems at OPOs over the years. We also worked with then-ranking member Ron Wyden, who is now chair of the Senate Finance Committee, Senator Ben Cardin, and Senator Todd Young, who actually reached out to Greg over a cold email when Young was still a member of the House. The four of them have really been tremendous leaders in this work.

So we went to see members of the Senate Finance Committee and also talked to members of the House Oversight Committee, which had a bipartisan hearing back in 2021. We tried to bring the data and the experts to show them what was going on. The Senate Finance investigation is now four years old, literally longer than Watergate, and has driven many reforms. And I think it's important to realize that Congress can still work. I really want to give credit to not only those four senators, but also Senators Elizabeth Warren, Cory Booker, Jerry Moran, Bill Cassidy, and on the House side, Congresswoman Katie Porter, and the current leader of the House Oversight Committee, James Comer. There are a lot of unlikely bedfellows here. 

GS: The Senate Finance Committee investigation launched publicly in February 2020, but Senator Todd Young first contacted me in 2014, when he was still a congressman. He was elected to the Senate in 2016, and eventually in 2018, he moved over to the Senate Finance Committee, where Chuck Grassley was Chair at the time and had been investigating UNOS on and off since 2005. 

I think when most observers think of Senate committee investigations, they imagine scoring social media points off of a TikTok executive or one the more high profile politicized investigations recently. What makes for a good committee investigation? What makes committee oversight work?

JE: I think out of the gate, it helps to have bipartisanship and finding points of commonality. You need to be able to convince the two political parties that this makes sense to move on and ground things in data. 

I just want to give a tremendous amount of credit to members and their staff, who really stayed focused on patients at every turn. They subpoenaed UNOS when it was stonewalling the investigation, and staffers pored over patient safety documents to highlight exactly what happened and who to hold accountable. It was painstaking work. 

There’s been a ton of resistance from some of the contractors themselves, but I also want to call out the good actors. There have been OPO leaders who have called for reform, who said that their jobs matter and that they and their colleagues should be held to a high standard. Some of them have testified before both the House and the Senate. 

GS: There have now been two Senate Finance Committee hearings. The hearings are vehicles to achieve a goal, and the Senate Finance Committee was so strategic and thoughtful about the fact that there were a hundred problems with the system. We fixed a few, but there are still ninety-something left. 

The first hearing was in August of 2022, and a potential contracting cycle for OTPN was coming up. That hearing successfully showed that the status quo is unsafe and untenable, and by March of 2023, HRSA announced the intent to break up the OPTN monopoly in the OPTN Modernization Initiative. Then in the July 2023 Senate Finance Committee hearing, Senators advocated for the passage of legislation to amend NOTA to support the breakup of the monopoly contract. Seven days later, the legislation passed. So to your point about scoring points on a TikTok executive, if there isn't a clear policy goal, what's going to fill that vacuum is a partisan goal or someone's need to go viral for reelection. 

So HRSA's modernization initiative happened before the bipartisan bill passed? 

JE: Yeah. The Senate Finance investigation is ongoing, but it launched in February 2020. They issued a damning report of system failures that called for the breakup of the monopoly in August of 2022. The modernization initiative then followed about nine months later, saying that they needed help from Congress to amend the National Organ Transplant Act. That bill actually originally came out of the Energy and Commerce Committee in the House, which is the Committee of Jurisdiction. Both the House and Senate passed the bill unanimously last July. 

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I feel like that back and forth relationship isn’t always obvious unless you’re plugged into the story of organ transplant oversight. A Senate committee hearing can basically push an HHS agency to act, even without a formal requirement that HRSA changes its behavior. 

JE: And this was not only Senate Finance, but also, huge credit to Senator Cory Booker and then-Congressman Mondaire Jones, who led a bicameral letter in November of 2022 that underscored the importance of the committee recommendations and called to break up the national monopoly and that CMS enforce the OPO rule as an urgent health equity issue.

We're now four years on from the investigation and just last week HRSA issued the first draft competitive Requests for Proposal (RFPs) for pieces of the OPTN contract. In our minds, nothing is actually going to be done until the monopoly is broken up, and there are new, competent contractors working in transparent contracting cycles that the government is holding accountable. 

The rule that lets CMS hold OPOs accountable based on objective data passed in 2020, but none of them have lost a contractor contract yet because of the sheer amount of time it takes to put those rules through and get through contracting cycles. The OPO rule went through a midnight regulatory review process in 2021, was passed again by the Biden administration, and then we had to wait for the next contracting cycle.

This year the federal government will collect data, but that data won’t be available until 2026, when failing OPOs will be replaced by higher performers. That regulation alone is projected to save 7,000 lives a year and one billion dollars annually to Medicare. So when will we think that the system is working for patients? When every part of the country is served by a high-performing OPO. That's not an abstract vision, you can look at performance metrics from the government. 

UNOS claims not to oppose the law change; they’re “excited to prove [their] value in a new competitive contracting environment.” Is that an accurate representation of their engagement with the legislative process? 

JE: I would go back to what Senator Chuck Grassley talked about, the fox guarding the chicken house. In the fight for the OPO rule, we saw that UNOS leaders were surrogates for the status quo on unenforceable OPO metrics and tried to block accountability. In similar fashion, the Association of OPOs lobbied against different provisions in the bill, trying to restrict competition.

GS: I think that there was a lot of laundering of that opposition through other groups, whether through an astroturf lobbying group or misinforming well-meaning patients who thought they were advocating for themselves but were doing it based on completely uninformed, misleading, or objectively incorrect inputs. In the last few years, lobbyists have said “We support the goals of increasing transplant, but we have edits,” but then their edits just oppose everything.

Kevin O'Connor, the chief executive of a Seattle-based OPO, said transportation problems are “minimal“ compared to the other reasons organs are discarded each year. He mentions biopsy findings, the inability to find a recipient, and poor organ function. What do you make of that? 

JE: There can be valid reasons to discard organs, but the United States is the only country that is throwing away one out of every four kidneys. I don't think anyone would be impressed by the “Look how many kidneys we didn't lose” argument much as they wouldn't want to hear a pilot say, “Look how many flights I didn't crash.” This is a system that has to operate at a high level every day, and we know how to do these logistics. Yet in 2024, we have a system where the technology goes down for hours at a time. The wifi at my house doesn't go down for hours at a time. And if it did, it would have no real consequence. That we have life and death systems that have such abject failures should be alarming.

In some instances, the system does work. Greg's dad got a heart transplant, but I do not think that it should have been a five year wait. We put patients and their families through way too much unnecessary pain, and the organ waiting list is an awful place to be. There are OPOs that do their job at a really high level, and I want every family and patient to receive that service. 

GS: To respond to that Kevin O'Connor quote, he is right that there are many reasons that organs are discarded. Jennifer is also right that the U.S. is an outlier. It isn’t necessarily true that one thing went wrong 100 times. It could be true that 20 things went wrong and they each went wrong five times, but the U.S. is the only country in which that happens. That still means that UNOS is failing to identify and remediate problems in the system. 

Yes, to Kevin’s point, transportation is a problem, but there are also ten other problems. I think that should only increase the urgency. Perversely, sometimes it just increases the feelings of fatalism in government. 

Are surgeon incentives an issue here? If you're a surgeon with a really high rate of successful transplants, you may not want to use a B+ kidney, you may want to wait for a better organ and contribute to discard rates.

GS: That is also a contributing problem, but let me give some context on how having an antiquated technology system exacerbates the problem. Remember, every organ is on a clock, and only good for so long. If I’m a surgeon, my patient is first on the list, and I'm offered the organ but for regulatory or perverse incentive, I don't want to take it for my patient, it goes to the next patient on the list. This becomes problematic because the technology is decades old. Seventeen percent of kidneys are offered to at least one deceased person before they are transplanted, because the system doesn’t do appropriate data hygiene to pull deceased patients off of the list. 

Are there also things that can be addressed for transplant centers? Absolutely. UNOS could make their technology nimble so that it's easy to go down the list, whether the surgeons are passing the kidney for a good or bad reason. They could identify policy problems, OPO behavior, or surgeon behavior, and go to regulatory bodies like CMS to demand they fix it. UNOS hasn’t done that. If you really press them into a corner, they’ll sometimes explain that there are lots of problems, but they have no track record of looking for solutions. 

Is there anything else I should have asked? 

JE: What I hope comes across is that this has been an effort across multiple administrations, with both political parties and two branches of government working to fix the system. It’s still not done, so we have to keep going. To win a policy fight, you have to win the same argument multiple times, and it’s important to stay vigilant beyond the regulation or law or front page story, until implementation actually affects people's lives.

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B.C. doesn't know where all its groundwater is going, even as drought looms, experts warn | CBC News

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Growing up on a ranch in the Columbia River Valley, water has always been part of Kat Hartwig's life, and over the years, she's noticed changes.

Marshy areas her family used for irrigation or watering cattle are dry, wetlands are becoming "crunchy" rather than spongy underfoot, and snowmelt is disappearing more quickly each spring, ushering in the dry summer months, Hartwig says.

Climate science supports her observations, showing that global heating is causing warmer temperatures and increasingly severe droughts in British Columbia.

Hartwig, who advocates for better water policy, and others say drought is exposing cracks in how the province manages water. 

Officials don't always know who is using groundwater, how much they're using, or where they're drawing it from, experts say. There are gaps in mapping and other data that officials need to effectively manage water during times of scarcity.

The province doesn't keep track of exact usage by most groundwater licence holders, the Ministry of Land, Water and Resource Stewardship confirmed. Rather, the licence sets the maximum amount of water each user can extract.

WATCH | Ongoing drought impacing B.C. food production: 

How long-term drought affects B.C. farms and fishing

As some parts of the province are still experiencing wintry weather, drought conditions persist, and it's changing the way British Columbians live, work and source their food and power. Two people in northern B.C. with a vested interest in groundwater levels tell us how they're managing.

That's the case for both domestic and some commercial users, including companies in the forestry, mining, and agricultural sectors, the ministry says.

At the same time, about two-thirds of pre-existing groundwater users have yet to even apply for licences since B.C. first began regulating groundwater in 2016.

The B.C. Energy Regulator publishes quarterly water-use reports for the oil and gas sector, and some other licensees may be required to report how much they use. Groundwater users may also be asked to complete a "beneficial use" declaration to show they're meeting licence terms.

But it's an incomplete picture of water use throughout the province at a time when signs point to deepening drought.

Hartwig, as well as Oliver Brandes, a water policy expert at the University of Victoria, and hydrogeologist Mike Wei, who retired from working for the province in 2018, say B.C. lacks sufficient mapping and details on groundwater sources.

B.C.'s Minister of Land, Water and Resource Stewardship, Nathan Cullen, says drought wasn't always front of mind for B.C. governments and the public.

"If there were worries [about] water, historically, there was often too much, right?"

Cullen's ministry has been tasked with catching up to today's climate reality and delivering the province's watershed security strategy, expected sometime this year.

An intentions paper shows priority areas include enhancing monitoring and addressing data gaps.

The B.C. First Nations Water Table is co-developing the strategy, and Cullen says the province is working to establish additional community-based groups this spring. 

Many of those tables involve members of the agricultural sector, he says, pointing to the recent announcement of $80 million in additional funding for the province's agricultural water infrastructure program to help farmers weather times of drought.

"The scope and scale of the challenges is real to my mind," Cullen says.

WATCH | UBC prof suggests better metering could help preserve water: 

UBC prof emeritus says water metering can help us respond to B.C. droughts

Hans Schreier, a professor emeritus at the University of British Columbia's Faculty of Land and Food Systems, says water metering can be an effective response to increasing drought conditions and water demand in B.C.

But "standing up what may be dozens and dozens of these community water tables in short order ... is very much in the government's interest," he says.

"This costs us one way or the other," the minister adds. "Better water management is a lot cheaper than the management of crisis, similar to forest fire mitigation."

As executive director of Living Lakes Canada, Hartwig works to build capacity for community-based water monitoring and fill the gaps in provincial data.

"We're also helping to educate and build a water-literate constituency, so people understand that groundwater is a treasure and not to be wasted," she says.

There were just two groundwater observation wells in the Columbia Basin when Living Lakes began monitoring in 2017, she says. Today, there are more than 30. Last year the group registered some of the lowest water levels in the last seven years.

In 2021, Living Lakes launched an open-access hub to bring water-related data from the Columbia region together in one place from sources including local governments, First Nations, community groups and the private sector.

But the experts say it's just scratching the surface of what's needed.

'Half a century of neglect'

B.C. has regulated surface water for more than a century, but before the Water Sustainability Act came into force in 2016, that wasn't the case for groundwater, says Wei, who helped the province develop the legislation.

Before 2016, he says, landowners could drill next to a stream and pump groundwater, potentially depleting surface water, without provincial knowledge.

That's changing, but Wei says B.C. is "dealing with half a century of neglect."

WATCH | How you can prepare for a summer of drought: 

How can people in B.C. prepare for drought and wildfire season?

As spring arrives, B.C. officials are already warning of an early and "challenging" wildfire season. Assistant Prof. Andréanne Doyon, director of the resource and environmental management planning program at SFU, tells BC Today guest host Dan Burritt that people need to think about protecting themselves and their neighbours well in advance.

He says B.C. has mapped 1,200 aquifers with about 240 observation wells, most on the South Coast and in the southern Interior.

But much of the mapping is "rudimentary" and monitoring infrastructure inadequate, Wei says. It often doesn't tell officials how much water is being used, which direction it's flowing, and what the sustainable supply from an aquifer might be.

Cullen says he "always [wants] more data," and the province is expanding monitoring sites.

B.C. has been working to bring people who use groundwater into the licensing system introduced with the 2016 legislation. The province offered existing users a six-year transition period to obtain a licence with the date recognizing their first use of the groundwater.

The date is crucial because licences showing newer usage are the first to be cut off during water scarcity under the "first in time, first in right" system, says Brandes, who leads the POLIS Water Sustainability Project at the University of Victoria.

Yet the province received just 7,700 applications from some 20,000 existing non-domestic users by the time the transition ended.

Those who didn't register may face a "rude awakening," Brandes says.

WATCH | Water shortages on the Gulf Islands: 

How extended drought has affected B.C.'s Gulf Islands

For the last 12 years, Rhonan Heitzmann’s Saltspring Water Company has been pulling water from underground and distributing drinking water to more water-vulnerable areas on Salt Spring Island. Heitzmann tells CBC host Dan Burritt what he’s noticed about water shortages on the island over the years.

"In a few places, there is basically not enough water," he says. "The people who ... weren't signed up in the transition period are going to be in a tough spot."

They can still apply for a licence moving forward, but it would no longer reflect when they first began using groundwater, Brandes says.

Cullen says sign-ups came in "dramatically" below what officials had hoped for and what the province needs to manage water.

"It's difficult to manage if you're not properly measuring," the minister says.

"We're trying to broadly understand the resistance to people getting licensed and to lower [it]," he says, adding things are "trending in the right direction."

"We're understanding the full actual nature of it in a much better way than we did, say, five years ago."

Fish protection orders issued

Brandes says the slow progress and general lack of "vital signs" about water in B.C. led to a "disaster" last summer, when critically low flows in several waterways prompted the province to issue fish protection orders that restricted the irrigation of forage crops in parts of the southern Interior.

The orders cut off several hundred surface and groundwater users and some ranchers resorted to selling livestock as they grappled with the shortage of feed.

Brandes says the province's handling of the situation contributed to uncertainty, social conflict, and a loss of public trust.

Wei, too, says the orders lacked transparency.

"People didn't know why they were being shut off. Science wasn't necessarily getting out there."

He says a lack of proactive investment in understanding water and building capacity to respond to drought leads to "scrambling" in the face of urgent situations, and scrambling is costly, financially and democratically.

"When you don't have information, it's not transparent, you erode public confidence in what you, the administrator for the resource, can do." he says.

"And when you start eroding it, you're eroding your democratic foundation."

The conversation in the Interior last summer "went badly," Cullen says, adding that restrictions are "the last thing" the government wants.

"Coming together is the path forward, and that's what we're doing. That's why we're having those conversations in 20-plus communities already."

Hartwig says the work in the Columbia Basin serves as a template and underscores the importance of community-led water monitoring and governance.

The project has uncovered streams that were "over-allocated" with licences, she says, as well as dry areas where government maps indicated high-elevation wetlands.

Yet she says three dozen community-based groups in the Columbia region have been forced to stop their work due to funding cuts in recent years.

"We have a huge amount of attrition of these small, volunteer-based water monitoring groups who are very concerned about their own watersheds," she says. 

"We need those boots on the ground. We need that level of water literacy, and we need them to participate in civil society, right? We can't have that eroded.

"And that's not being fortified by the province."

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sarcozona
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mkalus
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are dc’s speed cameras racist?

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The two most important things about speed cameras are that they save lives and that they are annoying. People think life-saving is good. They also think getting tickets is bad. These two beliefs are dissonant. Social psychology tells us that people will naturally seek to reconcile dissonant beliefs.

There are lots of ways to do this, some easier than others. For speed cameras, it typically means constructing a rationale for why cameras don’t really save lives or why life-saving initiatives aren’t admirable. A common approach is to claim that municipalities are motivated by ticket revenue, not safety, when implementing automated traffic enforcement (ATE). This implies that cameras’ safety benefits might be overstated, and that ATE proponents are behaving selfishly. Most people understand that this is transparently self-serving bullshit. It’s not really interesting enough to write about.

But there’s another dissonance-resolving strategy that popped into my feed recently that merits a response: what if speed cameras are racist?

This strategy doesn’t attempt to dismiss the safety rationale. Instead, it subordinates it. Sure, this intervention might save lives, the thinking goes, but it is immoral and other (unspecified, unimplemented) approaches to life-saving ought to be preferred.

This argument got some fresh life recently, citing a DC Policy Center study that makes the case using data from my own backyard.

I appreciate the work that the DC Policy Center does. Full disclosure: I’ve even cited this study approvingly in the past (albeit on a limited basis). But this tweet makes me worry that their work is transmuting into a factoid that is used to delegitimize ATE. I think that would be unfortunate.

So let’s look at this more closely. We can understand the study and its limitations. And, because DC publishes very detailed traffic citation data, we can examine the question of camera placement and citation issuance for ourselves–including from an equity perspective–and come to an understanding of what’s actually going on.

What does the DCPC study SHOW?

The most important result from the study is shown below:

The study reaches this conclusion by binning citation data into Census tracts, then binning those tracts into five buckets by their Black population percentage, and looking at the totals.

Descriptively, the claim is correct. The Blackest parts of DC appear to be getting outsize fines. But the “60-80% white” column is also a clear outlier, and there’s no theory offered for why racism–which is not explicitly suggested by the study, but which is being inferred by its audience–would result in that pattern.

To the study’s credit, it acknowledges that the overall effect is driven by a small number of outlier Census tracts. Here’s how they discuss it at the study’s main link:

Further inspection reveals five outlier tracts which warrant closer inspection. Four of these outliers were found in 80-100 percent black tracts while one was found in a 60-80 percent white tract. Of course, by removing these extreme values, the remaining numbers in each racial category do fall much closer to the average. But notably, the number of citations and total fines per resident within black-segregated tracts remains 29 percent and 19 percent higher than the citywide average, even after removing the outlier locations. Meanwhile, the considerably lower numbers of citations and fines within 80-100 percent white census tracts remain considerably lower than average. (For a more in-depth discussion of the results and the effect of these outliers, please see the accompanying methods post on the D.C. Policy Center’s Data Blog.)

But if you click through to that “methods post” you’ll find this table, which has been calculated without those outlier tracts. The language quoted above isn’t inaccurate. But it’s also clearly trying to conceal the truth that, with those outliers removed, the study’s impressive effect disappears.

What do we know about DC’s ATE cameras?

Let’s take a step back and look at this less reactively. What do we know about DC speed cameras?

The most useful source of data on the topic is DC’s moving violation citation data. It’s published on a monthly basis. You can find a typical month, including a description of the included data fields, here. I had previously loaded data spanning from January 2019 to April 2023 into a PostGIS instance when working on this post, so that’s the period upon which the following analysis is based.

The first important signal we have to work with is the issuing agency. When we bin citations in this way, we see two huge outliers:

ROC North and Special Ops/Traffic are enormous outliers by volume. We can be sure that these represent speed cameras by looking at violation_process_desc for these agencies’ citations: they’re all for violations related to speeding, incomplete stops, and running red lights. The stuff that ATE cameras in DC detect, in other words.

I am primarily interested in ATE’s effect on safety. The relationship between speeding and safety is very well established. The relationship between safety, red light running and stop sign violations is less well-studied. So I confined my analysis to the most clear-cut and voluminous citation codes, which account for 86% of the citations in the dataset:

 violation_code |          violation_process_desc          
----------------+------------------------------------------
 T118           | SPEED UP TO TEN MPH OVER THE SPEED LIMIT
 T119           | SPEED 11-15 MPH OVER THE SPEED LIMIT
 T120           | SPEED 16-20 MPH OVER THE SPEED LIMIT
 T121           | SPEED 21-25 MPH OVER THE SPEED LIMIT
 T122           | SPEED 26-30 MPH OVER THE SPEED LIMIT

I’m not going to focus on human speed enforcement, but it is interesting to examine its breakdown by agency:

DC publishes the location of its ATE cameras, but it’s easier to get this information from the citation data than from a PDF. Each citation record includes a latitude and longitude, but it’s only specified to three decimal places. This results in each citation’s location being “snapped” to a finite set of points within DC. It looks like this:

When an ATE camera is deployed in a particular location, every citation it issues gets the same latitude/longitude pair. This lets us examine not only the number of camera locations, but the number of days that a camera was in a particular location.

One last puzzle piece before we get started in earnest: DC’s wards. The city is divided into eight of them. And while you’d be a fool to call anything having to do with race in DC “simple”, the wards do make some kinds of equity analysis straightforward, both because they have approximately equal populations:

And because wards 7 and 8–east of the Anacostia River–are the parts of the city with the highest percentage of Black people. They’re also the city’s poorest wards.

With these facts in hand, we can start looking at the distribution and impact of the city’s ATE cameras.

  • Are ATE cameras being placed equitably?
  • Are ATE cameras issuing citations equitably?

A high camera location:camera days ratio suggests deployment of fewer fixed cameras and more mobile cameras. A high citation:camera day ratio suggests cameras are being deployed in locations that generate more citations, on average.

We can look at this last question in more detail, calculating a citations per camera day metric for each location and mapping it. Here’s the result:

Some of those overlapping circles should probably be combined (and made even larger!): they represent cameras with very slightly different locations that are examining traffic traveling in both directions; or stretches where mobile cameras have been moved up and down the road by small increments. Still, this is enough to be interesting.

Say, where were those DCPC study “outlier tracts” again?

Area residents will probably have already mentally categorized the largest pink circles above: they’re highways. Along the Potomac, they’re the spots where traffic from 395 and 66 enter the city. Along the Anacostia, they trace 295. In ward 5, they trace New York Avenue’s route out of the city and toward Route 50, I-95, and the BW Parkway. Other notable spots include an area near RFK Stadium where the roads are wide and empty; the often grade-separated corridor along North Capitol Street; and various locations along the 395 tunnel.

We can look at this analytically using OpenStreetMap data. Speed limit data would be nice, but it’s famously spotty in OSM. The next best thing is road class, which is defined by OSM data’s “highway” tag. This is the value that determines whether a line in the database gets drawn as a skinny gray alley or a thick red interstate. It’s not perfect–it reflects human judgments about how something should be visually represented, not an objective measurement of some underlying quality–but it’s not a bad place to start. You can find a complete explanation of the possible values for this tag here. I used these six, which are listed from the largest kind of road to the smallest:

  1. motorway
  2. trunk
  3. primary
  4. secondary
  5. tertiary
  6. residential

I stopped at “residential” for a reason. As described above, camera locations are snapped to a grid. That snapping means that when we ask PostGIS for the class of the nearest road for each camera location, we’ll get back some erroneous data. If you go below the “residential” class you start including alleys, and the misattribution problem becomes overwhelming.

But “residential” captures what we’re interested in. When we assign each camera location to a road class, we get the following:

How does this compare to human-issued speed citation locations? I’m glad you asked:

The delta between these tells the tale:

ATE is disproportionately deployed on big, fast roads. And although OSM speed limit coverage isn’t great, the data we do have further validates this, showing that ATE citation locations have an average maxspeed of 33.2 mph versus 27.9 for human citations.

Keep in mind that this is for citation locations. When we look at citations per location it becomes even more obvious that road class is overwhelmingly important.

ATE is disproportionately deployed on big, fast roads. And ATE cameras deployed on big, fast roads generate disproportionately large numbers of citations.

But also: big, fast roads disproportionately carry non-local traffic. This brings into question the entire idea of analyzing ATE equity impact by examining camera-adjacent populations.

Stuff that didn’t work

None of this is how I began my analysis. My initial plan was considerably fancier. I created a sample of human speed enforcement locations and ATE enforcement locations and constructed some independent variables to accompany each: the nearby Black population percentage; the number of crashes (of varying severity) in that location in the preceding six months; the distance to one of DC’s officially-designated injury corridors. The idea was to build a logit classifier, then look at the coefficients associated with each IV to determine their relative importance in predicting whether a location was an example of human or ATE speed enforcement.

But it didn’t work! My confusion matrix was badly befuddled; my ROC curve AUC was a dismal 0.57 (0.5 means your classifier is as good as a coin flip). I couldn’t find evidence that those variables are what determine ATE placement.

The truth is boring

Traffic cameras get put on big, fast roads where they generate a ton of citations. Score one for the braindead ATE revenue truthers, I guess?

It is true that those big, fast roads are disproportionately in the city’s Black neighborhoods. It’s perfectly legitimate to point out the ways that highway placement and settlement patterns reflect past and present racial inequities–DC is a historically significant exemplar of it, in fact. But ATE placement is occurring in the context of that legacy, not causing it.

Besides, it’s not even clear that the drivers on those highways are themselves disproportionately Black. That’s a question worth asking, but neither I nor the DCPC study have the data necessary to answer it.

The Uncanny Efficacy of Equity Arguments

Before we leave this topic behind entirely, I want to briefly return to the idea of cognitive dissonance and its role in producing studies and narratives like the one I’ve just spent so many words and graphs trying to talk you out of.

The amazing thing about actually, that thing is racist content is that it attracts both people who dislike that thing and want to resolve dissonance by having their antipathy validated; AND people who like the thing. Arguably, it’s more effective on that second group, because it introduces dissonance that they will be unable to resolve unless they engage with the argument. It’s such a powerful effect that I knew it was happening to me the entire time I was writing this! And yet I kept typing!

I think it’s rare for this strategy to be pursued cynically, or even deliberately. But it is an evolutionarily successful tactic for competing in an ever-more-intense attention economy. And the 2018 DCPC study debuted just as it was achieving takeoff in scholarly contexts:

None of this is to say that racism isn’t real or important. Of course it is! That’s why the tactic works. But that fact is relatively disconnected from the efficacy of the rhetorical tactic, which can often be used to pump around attention (and small amounts of money) by applying and removing dissonance regardless of whether or not there’s an underlying inequity–and without doing anything to resolve the inequity when it’s truly present.

Speed cameras are good, stop worrying about it

Speeding kills and maims people.

Speed cameras discourage speeding.

Getting tickets sucks, nobody’s a perfect driver, but ATE cameras in DC don’t cite you unless you’re going 10 mph over the limit. It’s truly not asking that much.

Please drive safely. And please don’t waste your energy feeling guilty about insisting that our neighbors drive safely, too.

map data, excluding DCPC, (c) OpenStreetMap (c) Mapbox

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sarcozona
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acdha
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