By DAVID INTROCASO

The Problem

From an anthropocentric perspective, the climate crisis is fundamentally a threat to human health and survival. 

The US healthcare industry significantly contributes to this threat. US healthcare’s greenhouse gas emissions (GHG) annually account for over 600 million metric tons of carbon dioxide equivalents or ~10% of total US annual GHG emissions.[1] If US healthcare was its own country, it would rank ~12^th worldwide in carbon pollution. 

Tragically, the industry and the US Department of Health and Human Services (HHS), responsible for regulating the healthcare market, remain committed to climate breakdown.  

The Solution

There was a sense of relief in 2020 when the National Academy of Medicine (NAM) announced its commitment to decarbonize the industry. The NAM’s silence had been difficult to understand in part because the National Academy of Sciences had recognized climate-related public health problems as early as 1966.  That year, NAM President Dr. Victor Dzau launched the Academy’s Grand Challenge on Climate and Health. The initiative was defined by a scoping paper drafted by Dr. Don Berwick, a former CMS Administrator, and two colleagues.  The authors wrote, “as the climate change public health catastrophe smolders, the US Healthcare system largely fiddles.” “Rather than ‘doing no harm,’ healthcare is fueling the carbon fire.” They recommended healthcare leaders “respond effectively to climate change,” by measuring “HEALTH outcomes as much by the environmental and public health impacts of our work as by the outcomes of particular patients.” “The healthcare sector must,” they concluded, “reduce its carbon footprint by 50%, in absolute terms, by 2030 compared to a 2010 baseline.” The recommendation aligned with a United Nations’ 2018 report that concluded reducing GHG emissions by this percent would provide a 50-66% chance that global warming would be limited 1.5°C above pre-industrial levels and thereby avoid irreversible climate tipping points.

In September 2021, Dr. Dzau announced a NAM and HHS co-chaired effort titled the “Action Collaborative on Decarbonizing the US Health Sector.” HHS was prepared because per an early 2021 White House Executive Order titled, “Tackling the Climate Crisis at Home and Abroad,” HHS Secretary Xavier Becerra had announced one month prior the creation of HHS’s Office of Climate Change and Health Equity (OCCHE). During his OCCHE press conference Becerra promised, “we’re going to use every tool at our disposal” to decarbonize the healthcare industry.

Motivations

There are several reasons why decarbonizing the healthcare industry has enormous significance.

With a market cap of upwards of $7.5 trillion, US healthcare, arguably the largest industry in the world’s largest economy, is exceptionally energy intensive being resource heavy in buildings, technology and labor. Equipment, lighting, strict ventilation, plug-in loads and high-occupancy mean hospitals are ovens even when outside temperatures are below freezing.

The industry is equally energy inefficient. The ten-year running average ending in 2025 of hospitals EPA Energy Star certified was 88, or less than 1.5% of an American Hospital Association-estimated 6,100. Operating rooms are particularly energy sinks accounting for ~50% of a hospital’s GHG emissions largely because of significant use of disposable medical supplies.   

High entropy healthcare was nowhere near decarbonizing much less accounting for its GHG emissions. While total US GHG emissions decreased by ~5% between 2010 and 2018, healthcare’s increased by ~6%. Research published in 2022 concluded healthcare “lags far behind in terms of [climate] sustainability, management and disclosure,” because “there is no sector-wide push from academic or industry leaders, government . . . regulators . . . or payors.”

Fossil fuel combustion exposes everyone, everywhere to innumerable and unrelenting health harms. Effectively everyone worldwide breathes substandard air accounting for upwards of ~8 million deaths annually. A study published in 2018 concluded 58% of estimated excess US deaths are due to fossil fuel use. A study published in 2022 concluded an equal percent of infectious diseases are aggravated by climate-related hazards and pathways.

GHG emissions pose a meta-problem, an underlying problem about a problem. Absent their removal, every healthcare policy effort to improve access, equity, quality, spending, value and utilization are compromised.   

Add to these ironies healthcare’s harm-treat-harm business model disproportionately impacts those HHS is primarily pledged to protect: ~160 million Medicare and Medicaid beneficiaries. The vast majority of Medicare seniors are comorbid and have a diminished ability to thermoregulate. A 2024 study concluded that for all Medicare beneficiaries, “no safe threshold exists for the chronic effect of particulate matter on overall cardiovascular health.” Children, ~45% insured by Medicaid, breathe more air per kilogram, breathe more polluted air due to being closer to the ground and have developing lungs, brains and immune systems. Particularly for these populations, healthcare is itself traumatic. Iatrogenesis is built in.  Nevertheless, HHS annually spends ~$1.6 trillion or ~24% of the federal budget to have Medicare and Medicaid patients pay the greatest climate penalty. 

According to the latest EPA estimates, the social cost or the monetary value of the net social harm of just three healthcare emissions is as high as $3.5 trillion, or more than twice the combined annual Medicare and Medicaid budgets. Per Daniel Bressler’s pioneering 2021 mortality cost of carbon calculation, healthcare’s annual GHG emissions are responsible for upwards of ~400,000 deaths.

Hope

There was plausible belief the Action Collaborative would achieve success.  HHS regulations define the healthcare market. The world’s largest healthcare purchaser, Medicare, is, as the late Princeton economist Uwe Reinhardt liked to say, the market maker. The NAM is considered the ultimate authority on medicine and health, the highest arbiter of medical truth. The Academy had been successful in past efforts that re-defined public health, launched the modern patient safety movement and established quality improvement goals.

At least partially funded by the healthcare industry, the Action Collaborative consisted of ~50 senior industry executives and academics. Work was defined by a steering committee led by industry powerholders Kaiser Permanente, UnitedHealth Group, Cardinal Health and Medtronic along with the American Hospital and American Medical associations and the Biotechnology Innovation Organization (BIO).

The first and ultimately only sign of legitimate Collaborative “action” was an essay published in late 2022 titled, “Mandatory Reporting of Emissions to Achieve Net-Zero Health Care.” It was not unanticipated because co-author, Don Berwick, argued during the Collaborative’s 2021 kick-off, “the [Collaborative] effort needed to employ metrics quantifying GHG emissions.” “Without [them],” he said, “we’re dead.” The four Action Collaborative authors recommended healthcare be required to publicly report whole-organization GHG emissions; the Greenhouse Gas Protocol be exploited; and, HHS be required to partner with the EPA to modify its Energy Star program to include Scope 3 supply chain emissions. They also proposed The Joint Commission (TJC) incorporate decarbonization metrics into their accreditation surveys; decarbonizing efforts inform Medicare and Medicaid value-based payments and quality performance benchmarking; and, public reporting be independently verified.

Reality

Five months later in May 2023, the Action Collaborative held its annual virtual meeting that was defined by TJC’s CEO Dr. Jon Perlin’s presentation.

TJC and other CMS-contracted accrediting organizations are required to comprehensively survey hospitals and other healthcare entities to determine whether they meet quality and safety standards or moreover meet Medicare and Medicaid Conditions of Participation (COP). These include maintaining a hospital’s physical plant such that the safety and well-being of patients are assured. Accreditation is voluntary but is required if healthcare providers want to participate in Medicare and Medicaid. 

Perlin explained the TJC convened a panel to draft sustainability or climate-related hospital accreditation standards.  Informed by Berwick’s COP recommendation, Perlin identified four standards. Most importantly, hospitals measure three or more of the following: energy use; purchased energy; anesthetic gas use; pressurized metered dose inhaler use; fleet vehicle fuel consumption; and, solid waste disposal. Perlin admitted these standards in sum set a low bar, that requested information was readily available and that there was a business case for carbon accounting. 

Perlin explained further TJC’s proposed standards were put “out for public review.” As a convenience survey, unsurprisingly, they did not receive “a terribly warm reception,” Perlin said.  “Because of the turbulence that has been articulated here, we are going to,” he concluded, “launch these [standards] initially as extra credit.”    

Perlin’s decision was brilliant.  It provided political cover for Secretary Becerra who could point to TJC’s voluntary sustainability program to justify or excuse HHS inaction. In turn, Perlin could point to regulatory inaction to affirm TJC’s sustainability certification. In addition, as voluntary, it did not threaten TJC’s dominant position in the hospital accreditation market. Three years later TJC’s voluntary certification employs the same criteria. TJC’s website currently lists 30 certified hospitals.  It appears none were Energy Star certified in 2025 for energy efficiency.  

No one objected. Instead, the meeting’s facilitator, then UnitedHealth Group CEO, Andrew Witty, stated with calculated insincerity, “I hope some of that push back you’re receiving over time can recede.” 

Perlin’s decision, analogous to John Sununu’s Noordwijk moment, combined with Witty’s insouciance, effectively ended the Action Collaborative’s effort.  

The following year’s public meeting was cringe-worthy. After being introduced as the Action Collaborative’s new co-chair, former Senator Bill Frist, a majority stock holder in the ~$90 billion hospital chain HCA founded by his father, immediately stole a page from the manufacturing doubt playbook. “There still is not a clear understanding of what can be done,” Frist said, “in terms of . . .what we can do from a public health model in terms of identifying the root causes” of climate breakdown.

Don Berwick immediately followed. He took a different tack. He strenuously admonished his colleagues stating in part, “The clock is ticking . . . stuff needs to be done now, not later. Stop complaining; the excuses about mandates and cost and business case won’t do the job. Nature is unforgiving. She does not care about the discomfort that we have to go through in order to stop the global warming and the time for resistance, the time for complaining, it’s over. Measure and report GHG emissions especially, there has been strong resistance even in this collaborative to public reporting and transparency about emissions but it’s the only thing that counts.” 

Soon after the Action Collaborative’s 2024 meeting, HHS OCCHE staff published an essay summarizing healthcare’s GHG emissions tracking and reporting to date. They concluded with blunted affect, “the extent to which health systems are sharing emissions data publicly has remained uncertain.”   

The HHS/NAM fleeting effort to decarbonize the industry was indeed over. In Phase 2 of the NAM’s Grand Climate Challenge, 2024-2025, HHS and NAM leadership would betray their institutional responsibilities by defaulting to “interested organizations” or a “coalition of the willing.” The Action Collaborative would now play domestique “supporting organizations across the nation on their climate and health journey” by, “cultivating,” “engaging,” “facilitating,” “leading,” “leveraging,” “mobilizing,” and “serving.”  

Discussion

Under Secretary Becerra, HHS’s effort to decarbonize healthcare amounted to passive obstructionism or at best an exercise in performative guilt….

Part 2 will be on THCB soon

David Introcaso is a healthcare research and policy consultant based in Washington, D.C

By FRANK LEAHY

This is the second of two pieces. The first told the story of “Rick,” a 77-year-old Humana Medicare Advantage member who nearly lost his sight in a months-long runaround over a retinal detachment. This one asks what his case reveals, and what would help fix it.

The runaround was exhausting – the hold times, the repetition, the new voice on every call. But the most disturbing moment wasn’t any of that, and it wasn’t a denial. It was a justification. The claims that paid his surgeon $0.00, a Humana representative explained, were “paying correctly based on the contract loaded.”

Hold onto that sentence, because it reframes everything. What nearly cost Rick his sight was not one careless adjuster or one unlucky claim. The system did what it was built to do. It was designed so that a 77-year-old losing sight in one eye, and the surgeon who saved it, could end up with nothing – and no understandable way to make it right.

No understandable way is the heart of the problem. When a privately insured patient gets an unfair out-of-network bill, federal law hands their doctor a referee: the No Surprises Act, which lets a provider force a fair payment through arbitration. But that law was written for commercial insurance and never reached Medicare Advantage. On paper, Rick’s surgeon was already owed at least the standard Medicare rate; Medicare Advantage’s own rules say so. But he was paid nothing – and unlike a commercial patient’s doctor, he had no arbitration, no referee, no way to force the issue. What finally worked was a letter to Humana’s CEO and board of directors – a lever that shouldn’t have been needed.

Not an Outlier

Rick’s is just one case among a very large number. In 2023, Medicare Advantage insurers reviewed roughly 50 million prior-authorization requests and denied about 6.4% of them. Only 11.7% of those denials were ever appealed – and of the ones that were, more than 80% were partly or fully overturned. When four of five challenged denials get reversed, the obvious question is how many of the unchallenged ones were wrong too. (Source: KFF, 2025.) The federal Office of Inspector General has repeatedly found Medicare Advantage plans denying or delaying care that traditional Medicare would have covered.

What Rick’s case adds to those numbers is texture. His problem was never that his care was judged unnecessary – it was eventually authorized. His problem was that the rules were invisible and the process had no owner. No one told him a referral was required until he’d already failed to get one. The primary care doctor who was listed on his Humana Medicare Advantage card was a stranger in another state. The insurer’s own directory listed specialists who didn’t take the plan. Every answer contradicted the last, and nothing was ever put in writing. He was expected to navigate a maze whose walls appeared only after he’d walked into them. And when the maze finally produced a number, the number was $0.00 – for a surgeon the same insurer confirmed, on a recorded line, was in network.

Three Fixes That Can Help

There are many big proposals about how to fix health care in America, but I’m going to propose three narrow, unglamorous fixes that answer the simple question: Would it have helped Rick at the time of his accident?

First: If a doctor appears in the plan’s directory, the plan pays the bill. This is the most important one, because it is the exact contradiction that trapped Rick. Humana listed his surgeon as in network. A Humana agent confirmed it on a recorded call. And Humana eventually paid $0.00, calling that “correct.” A plan should be held to its own information: if you publish a provider as in-network, that publication is a promise, and you owe the claim. No more paying nothing while insisting the directory was never a guarantee.

Second: Drop the primary-care referral requirement in Medicare Advantage. Original Medicare has no such gate; a patient can go straight to the specialist they need. For Rick, the referral requirement – which no one disclosed – was the tripwire that cost him weeks he didn’t have, all so a primary care doctor who had never treated him before could sign a form. For urgent specialty care, the gate protects no one but the insurer’s budget.

Third: Give every complex case one accountable person, and put rules, decisions, and next steps in writing. The deepest failure in Rick’s case wasn’t any single rule. It was that no one owned the outcome. Each call reached a new stranger with a new answer and no memory of the last. Members facing urgent or complicated care need a single named case manager who sees it through, and they need the plan’s requirements and decisions in writing, so the rules can’t shift from one call to the next. Faster pickup and friendlier reps would be nice, but the fix that matters is accountability: a human whose job is to get you through, and a paper trail that can’t be denied later.

What these three have in common is that the adversary is opacity. The rules are hidden, the information is unreliable, and no one is accountable for the result. Each fix attacks one of those: hold the plan to its own directory, stop hiding requirements behind a needless gate, and give the member a person and a paper trail they can follow. Transparency and accountability rather than grand redesign.

None of this abolishes Medicare Advantage, and none of it needs to. For millions of healthy enrollees it works, and it’s cheap. The problem is what happens to the ones who get sick and fall into the gaps – and right now the system answers them with contradiction, opacity, and a $0.00 payment it calls correct.

Rick finally got his surgery, and his surgeon eventually got paid, but only because one stubborn neighbor refused to give up. The reforms above mean the next Rick won’t need one.

Frank Leahy is an independent advisor & investor who had a 45 year career leading engineering teams in Silicon Valley including stints at Intel, Apple, Salesforce and several startups.

By MIKE MAGEE

The world of medical science largely closed ranks last month in defense of Tony Fauci. Dr. Fauci had been hauled before the Senate Homeland Security Committee to face hostile entrapment by long time critique Senator Rand Paul of Kentucky. Taking no chances, his lawyers had the former head of NIH’s Infectious Disease division plead the 5th to avoid entrapment, fines, and even imprisonment.

It has been five years since Dr. Fauci appeared on MSNow (formerly MSNBC) and encourage viewers to “keep an open mind” when it came to “gain-of-function” research and the origins of the Covid pandemic. Since then, a 2025 WHO report stated “As things stand, all hypotheses must remain on the table.” That includes the possibility that the viral tragedy resulted from the inadvertent release of a genetically engineered virus from the Wuhan, China, laboratory of Shi Zhengli, a virologist trained at the University of North Carolina.

The risky experiments, termed “gain-of-function” studies, were justified as super-secure, safe, predictive, and preventive. Shi returned to her labs in 2018 and 2019 with grant funding from the National Institute of Allergy and Infectious Disease and the Department of Defense via an intermediary, the New York based non-profit EcoHealth Alliance,whose funding was retracted in 2024.

Their coordinator-in-chief was one Peter Daszak. Daszak is known for adopting militarized terms in the battle against global infectious diseases. In 2020 he wrote in the New York Times, “Pandemics are like terrorist attacks: We know roughly where they originate and what’s responsible for them, but we don’t know exactly when the next one will happen. They need to be handled the same way — by identifying all possible sources and dismantling those before the next pandemic strikes.”

Daszak’s argument that risks involved in Shi Zhengli’s Wuhan bat virus research were justified as defensive and preventive was convincing enough to the NIH and the Department of Defense that his EcoHealth Alliance was funded from 2013 to 2020 (contracts, grants, subgrants) to the tune of well over $100 million – $39 million from Pentagon /DOD funds, $65 million from USAID/State Dept., and  $20 million from HHS/NIH/CDC.

Daszak’s position within the scientific community was controversial. In fact, in 2014, a group of concerned scientists called the Cambridge Working Group issued this statement: “Accident risks with newly created ‘potential pandemic pathogens’ raise grave new concerns. Laboratory creation of highly transmissible, novel strains of dangerous viruses, especially but not limited to influenza, poses substantially increased risks. An accidental infection in such a setting could trigger outbreaks that would be difficult or impossible to control.”

All of this, it seems, would be “old news” except for last week’s dramatic announcement that “For the first time, scientists have used artificial intelligence to create new kinds of viruses, raising hopes for medical advances while also raising the disturbing possibility that the technology could someday be used to invent dangerous pathogens.”

It has been 23 years since scientists first constructed a synthetic viral genome. But Evo, a creative science AI newcomer, produced by OpenAI has apparently broken new ground – on its own. Well not completely. Its’ masters primed the pump by feeding the AI engine with nine trillion nucleotides (the human genome has 3 billion) obtained from millions of diverse species.

The scientific engineers focused down on a well-known virus that is generally active primarily in attacks on the bacteria, E-coli. It’s called Phi X-174. It has been utilized for some time in genetic engineering exercises. But in this case, it (along with some 15,000 close chemical relatives), was feed into Evo with the instruction to create new novel viruses of its own. 

And create it did, spitting out some 700,000 variations, most non-viable. From these, the human masters chose 285 DNA combos which they injected onto bacterial petri dishes. In 16 cases, they were able to visualize a “hit.” That is, the injected viral newcomers demonstrated activity against the bacteria.

Not all scientists cheered the findings. The potential usefulness in medicine and biotechnology, including the treatment of genetic disorders and cancer, are real. But the downside could be potentially catastrophic. For example, Johns Hopkins scientist, Dr. Moritz Hanke said, “There’s just a huge disconnect. You could say, ‘Hey, genomic language model, make me an influenza genome that is modified to be more transmissible or to be more lethal.”

Connecting the dots, lessons learned from the Covid pandemic, and Dr. Fauci’s availing himself of 5th Amendment protections, somewhat overshadowed the announcement of new HHS federal rules governing and restricting Gain-of-Function research. But HHS in response to Evo’s AI creations stated that computer-based research “is not prohibited by this policy unless it involves an entity of concern.” But as the Covid pandemic well illustrated, that knowledge may arrive too late.

We have indeed entered a brave new world. Dr. Hanke summed up the risk succinctly with this question, “What is the risk of what I’ve never seen before?”

Mike Magee MD is a Medical Historian and regular contributor to THCB. He is the author of CODE BLUE: Inside America’s Medical Industrial Complex. (Grove/2020)

By FRANK LEAHY

On a gray February morning, I sat in my office in Inverness, in rural northern California, with the phone pressed to my ear, jotting down notes and Humana reference numbers. Across the table, my new friend Rick, 77, waited anxiously, struggling to follow the conversation. Nearly deaf and now partially blind, Rick had lived with a detached retina for weeks. Time was running out to save his vision.

I was determined to get Rick the surgery he needed. But as hours turned into days and days into weeks, I found myself ensnared in the kind of bureaucratic maze familiar to millions of Americans with Medicare Advantage plans.

This is the story of a vulnerable senior and his advocate, caught between doctors, clinics, and insurers at the hard edge of Medicare Advantage – America’s privatized Medicare system. It is a story of denials, delays, and a rulebook no one would explain – and of the human cost when a system is built to save money, not sight. It is also a story about how and why it took seven months, and a letter to a Fortune 500 CEO, to get one surgeon paid.

“I Just Want to See Again”

Rick’s world had been shrinking for years. Hard of hearing and living on less than $1,200 a month in Social Security and SSI, he split his time between Colorado and a friend’s spare room in rural California. With no family nearby, no internet, and only a battered flip phone, he relied on friends for help.

In mid-November 2024, Rick fell out of bed, striking his head and injuring the left side of his face. He shrugged off the pain, but over the following weeks his vision blurred, then faded. “I thought it would get better,” he said. “But it just kept getting worse.”

I met Rick in late December 2024. He told me about his fall, the injury, and that he could no longer see out of his left eye. It was clear how serious his situation was, and how much support he needed, so having recently retired I had the time to help him. But it was nearly too late. After weeks of back-and-forth with Humana, I finally got him in front of an ophthalmologist, who diagnosed a retinal detachment – a medical emergency where prompt treatment is essential to prevent permanent blindness.

Getting that treatment would prove far harder than I could have imagined.

The Medicare Advantage Trap

Rick was enrolled in a Humana Gold Plus HMO, a Medicare Advantage plan based in Colorado. Why Humana? Pure happenstance. He had been shopping at a Walmart in Colorado when a man “who seemed nice” signed him up. Like a lot of older people, Rick didn’t know the difference between Medicare Advantage and Original Medicare with a Medigap supplement – or why that difference would come to matter so much.

Like more than half of all Medicare beneficiaries, Rick had been drawn to a private plan by the promise of extra benefits and lower costs. The catch is that Medicare Advantage plans are built on narrow provider networks and strict rules about where and how you get care. For snowbirds, part-time residents, or anyone who lives in more than one state, those rules can become a trap.

My first call to Humana set the tone:

“I searched for a doctor on your website. I found one and called them. They say they don’t take Humana, even though your website says they do,” I told a representative, reading from my notes. “Can you find one for me?”

“You can, but I need Rick on the line.”

“He’s right here.”

“Okay, but I also need additional documentation…”

The runaround had begun.

The Rules No One Explained

To get surgery, Rick needed a referral to a retina specialist. No one at Humana told us that at the start. We learned it the way we learned every rule in this process – by hitting a wall, calling back, and being told, after the fact, that we had failed to do something no one had mentioned.

The referral had to come from a primary care physician (PCP), and Rick, in any practical sense, didn’t have one. There was a Colorado PCP listed on his Humana card – someone he’d never met, in a state he couldn’t travel to with a detached retina – but when we called the office they said Rick would need an in-person appointment to get a referral. Functionally, he had no PCP at all.

Getting one was its own ordeal. Primary care is scarce everywhere now, and getting scarcer, and a new patient who is elderly, low-income, and on an out-of-state HMO is exactly the kind of patient practices are least interested in taking on. Some weren’t accepting new patients. Some didn’t take the plan. Some couldn’t schedule him for weeks. Meanwhile the requirement no one had explained was standing between Rick and the specialist he urgently needed.

And when I did reach someone at Humana, the answers contradicted each other. Some reps said a referral was required; others said it wasn’t. Some said we could switch Rick’s primary care doctor to a local one; others said only during open enrollment, or only with more paperwork, or only with Rick on the call. And even with both of us on the line, the change stalled. There was no map of the process, no single person who owned it, no way to know in advance what the next hidden requirement would be. The rules existed. They were just invisible until you had broken one. And nothing was ever provided in writing.

Humana’s own directory only deepened the confusion. It listed several in-network retina specialists, but when I called, most didn’t actually take the plan, or demanded a referral from the local doctor Rick didn’t have. “We can’t approve the surgery without pre-authorization, but you need to see an in-network specialist first.” “There are no in-network specialists available.” “I’m sorry, that’s the policy.” All the while, Rick’s vision slipped further away.

An Emergency Room, an Emergency Referral – and Still No Surgery

Desperate, I took Rick to the emergency department at a major San Francisco academic medical center. Doctors there confirmed a chronic left retinal detachment, with a poor prognosis for recovery because of the delay. They issued an urgent referral to the hospital’s ophthalmology clinic, hoping to fast-track surgery.

Even then, the insurance barriers held. The hospital would not schedule Rick without a payment guarantee from Humana. Humana would not guarantee payment without a referral from his out-of-state primary care doctor and pre-authorization – steps that could take weeks.

“The system is not set up for people who move between states, have no fixed address, or have cognitive or hearing impairments,” I told my wife one night. “It’s a constant loop of referrals, authorizations, and confirmations, with no one accountable. I have spent 45 years as a software engineering leader in Silicon Valley and am finding it almost impossible to navigate. Now I see how people end up without the care they need, or living under a freeway overpass.”

The Clock Runs Out

Retinal detachment is a race against time. The longer the retina stays detached, the lower the odds of restoring sight. For Rick, the delays were devastating.

After weeks of calls, faxes, and appeals, I finally found a local primary care doctor willing to see Rick and write the referral. A retina specialist then agreed to operate. Even then, the insurance hurdles didn’t end.

Humana’s Explanation of Benefits statements told the story in cold, bureaucratic language. For the initial consult, imaging, and surgery – thousands of dollars in care – Humana paid nothing. The denial cited a charge that “exceeds fee schedule/maximum allowable or contracted/legislated fee arrangement.” In plain English, the provider – who was listed as in-network on Humana’s website – was treated as out of network, so the allowed amount was $0.00.

As a dual-eligible for Medicare and Medicaid, Rick was protected from being billed directly. But his surgeon went unpaid, and the follow-up procedure to remove the silicone oil used to reattach the retina hung in limbo.

“It Should Have Been Removed Within Three Months”

In July, roughly five and a half months after the first surgery, the retina specialist wrote to Humana: he had repaired Rick’s retina with silicone oil in an emergency operation, and it was important to remove that oil in a separate procedure so Rick could reach his best possible vision.

Silicone oil is generally removed within about three months. Leaving it longer raises the risk of glaucoma, cataracts, and further vision loss. But Humana kept denying payment and authorization, citing the same network and contract barriers. The appeals dragged on with no end in sight.

How It Finally Ended

Here is the part that still stuns me. Rick’s surgery was finally authorized. His referral was finally accepted. But still, for months, the surgeon who saved what was left of his sight was paid exactly nothing.

The reason had nothing to do with whether the care was necessary. It was buried in Humana’s own records. When I finally reached Humana’s executive resolution team – and only after I wrote directly to Humana’s CEO and board of directors – the specialist assigned to the case told me the claims were paying $0.00 because of how the surgeon was “loaded” in Humana’s system. His most revealing sentence: the claims were, he said, “paying correctly based on the contract loaded.”

Sit with that. By Humana’s own logic, paying the surgeon nothing wasn’t a mistake. It was the system returning the correct answer.

And here is the contradiction that proves how arbitrary that answer was. Around the same time, when the surgeon’s office called Humana directly to arrange Rick’s second operation, a Humana agent confirmed on the phone that Rick was in network with both the surgeon and the hospital, and that the oil-removal procedure required no prior authorization at all. In network and paid zero, at the same time, by the same company.

There was no outside referee to appeal to. The No Surprises Act – the federal law that lets an out-of-network doctor force a fair payment through arbitration – does not cover Medicare Advantage, and so the one backstop built for exactly this situation was unavailable. Escalation was the only lever left, and escalation meant going over the heads of everyone in the ordinary process, all the way to the boardroom.

So that is what it took. Not the provider directory. Not the appeals line. Not the dozens of hours I logged – by my own conservative count, more than ten calls to Humana totaling nearly four hours, plus two dozen more to clinics and hospitals. What finally moved the claim was a letter to the CEO and board of a Fortune 500 company, which routed the case to an executive-inquiry team, which spent weeks working with contracting before someone finally wrote the sentence I had been waiting months to read: “We have updated the provider’s information so claims should process with payments according to their contract.” The claims were sent back for reprocessing, and in early September 2025 – roughly seven months after the emergency surgery – the surgeon was paid.

Only then could the follow-up proceed. The silicone oil that should have come out within about three months had stayed in for roughly seven. It waited not on medical approval – Humana had confirmed the removal needed none – but purely on money. The surgeon, reasonably, would not schedule more unpaid work until the first bill was settled. Once it was, the oil was removed in September 2025 – almost ten months after he fell out of bed.

Rick can see a little now. His vision is permanently diminished by the delay, but he is no longer at immediate risk. He was lucky – lucky mostly in that he happened to have a neighbor with the time, the stubbornness, and eventually the right people to write to. Most people have none of that.

That is the part that should worry everyone. Because Rick’s case is not a story about one bad insurer or one broken claim. It is a story about a system designed for delays and denials, and about what that reveals for the millions of people who are one fall away from getting the same runaround treatment from their Medicare Advantage plan.

Frank Leahy is an independent advisor & investor who had a 45 year career leading engineering teams in Silicon Valley including stints at Intel, Apple, Salesforce and several startups. In part 2 of this article he suggests how some simple reforms might fix Rick’s experience

By STEPHEN FARBER

If you grew up in the 1980s, you probably remember Press Your Luck. Contestants stood in front of a flashing game board chanting, “Big bucks… no Whammies… STOP!” hoping the next square held cash instead of the mischievous cartoon character that erased everything they had won.

For years, assembling your own medical history felt remarkably similar.

You knew you had been treated at one hospital years ago, had imaging performed somewhere else, saw specialists who later retired, and changed insurance more than once along the way. One patient portal showed part of the story. Another required a password you hadn’t used in years. A medical records department offered to mail you a PDF after you completed a release form. Somewhere there was still a CD that no computer in your house could read. None of this meant your information had disappeared. It simply meant that putting it together depended almost as much on persistence as process.

That has always been one of healthcare’s great ironies. The industry became exceptionally good at documenting encounters. Every office visit, laboratory result, prescription, imaging study, discharge summary, and insurance claim was carefully preserved somewhere. What it never became particularly good at was helping individuals assemble those encounters into a coherent picture of their health over time.

For years, most of us accepted that as an unavoidable consequence of a fragmented healthcare system. In reality, it reflected a combination of technical limitations, business incentives, and regulatory uncertainty that made sharing information far more difficult than creating it. Patients often became the courier between organizations because there were few practical alternatives.

Quietly, that has begun to change.

While much of the industry’s attention has shifted toward artificial intelligence, another transformation has been taking place beneath the surface. The 21st Century Cures Act, Information Blocking regulations, standardized FHIR APIs, CMS interoperability requirements, and the continued evolution of TEFCA have collectively changed the trajectory of patient access. None of those developments solved the problem on their own, but together they have created an environment in which individuals can retrieve far more of their own health information electronically than was practical only a few years ago.

Although we’re still in the early stages, the technology has matured to the point where individuals can increasingly assemble and steward their own longitudinal health record. That changes the conversation. For much of the past decade, patient access was largely a policy discussion centered on whether people should have meaningful electronic access to their own information. Increasingly, the more interesting question is what becomes possible once they do.

As the market has evolved, complementary approaches have emerged. Some companies focus on helping individuals retrieve records directly from the organizations that hold them. Fasten Health is an interesting example because it begins with a simple premise: individuals should be able to assemble a record they control. Other organizations focus on discovering where records exist through exchange networks, while infrastructure companies simplify connectivity so developers can build applications without creating thousands of individual integrations. These approaches solve different problems, but they increasingly reinforce one another instead of competing.

That convergence has quietly moved the industry across an important threshold. For years, success was measured by our ability to collect fragmented data. Standards had to mature, regulations had to evolve, organizations had to expose information electronically, and software developers had to build practical ways of retrieving it. Much of that work occurred outside public view, but together it has made something increasingly realistic that once felt aspirational.

Bringing information together is a significant achievement because it gives people, often for the first time, a more complete picture of their interactions with the healthcare system over many years. A longitudinal health record tells us where someone received care, what diagnoses were made, which medications were prescribed, and what procedures were performed. Those are essential building blocks, but they rarely explain why decisions were made, what alternatives were considered, who participated in those conversations, or what mattered most to the individual at that point in life. Records preserve information extraordinarily well. Context has always been more difficult to preserve.

Healthcare has good reasons for operating around encounters because that is how care is delivered, documented, and reimbursed. People, however, experience their lives as a continuous story in which one decision influences the next, often over decades.

The opportunity created by patient access is therefore not simply the ability to retrieve more information. It is the ability to connect that information with the context that gives it meaning.

Developing that context does not replace the medical record. Clinical documentation remains the authoritative record of care, and it should. The opportunity is to allow individuals to connect those clinical records with information that has historically lived only in conversations, family members, notebooks, and memory. Healthcare has never lacked information. It has often lacked continuity.

That continuity becomes increasingly important as people live longer with multiple chronic conditions, receive care from more organizations, and depend on spouses, adult children, friends, and neighbors to help navigate the system. Each transition creates another opportunity for context to be lost. Each new physician inherits another chapter without necessarily understanding the chapters that came before it. A longitudinal health record makes those chapters easier to assemble. A longitudinal health story makes them easier to understand.

The first chapter of interoperability was making health information accessible. The next chapter is helping individuals assemble, enrich, and share a longitudinal health story. Patient access was never the finish line. It was the foundation.

Stephen Farber is Co-Founder and CEO of HealthHive and on the Board of Directors of the American Society on Aging.

By DAVID INTROCASO

Last month the House Energy and Commerce and the Senate Health, Education, Labor and Pensions (HELP) committees passed three hospital price transparency (price T) bills by a combined vote 90-22. Afterward, HELP Chair, Dr. Bill Cassidy, stated he was ‘optimistic” and “confident” price T legislation would be enacted by the Congress this session.

Over the past decade federal policymakers have concluded price T will constraint or moderate hospital prices. In theory, the logic is straight-forward. By requiring hospitals to publish machine-readable files and consumer-friendly negotiated and cash rates for “shoppable” hospital services, transparency or disclosure will expose significant price variation empowering patients to comparison shop. In turn, this will spur hospital price competition and bend the healthcare cost curve.  

Because research published by several major medical and health policy journals has concluded HHS’s 2021 price T regulation has failed, the Congress has decided to weigh-in by codifying and expanding HHS price T regulations.

This assumes much. Per Ken Arrow, medical care is not a typical commercial or market commodity. Think: information asymmetry. Clinical diagnoses are often emergent, unpredictable and accompanied by acute physical and emotional distress. Focusing on price ignores or excuses the fact that in functioning markets prices are largely determined by costs. Here, they are largely ignored even though hospital prices are poorly and unpredictably correlated to costs. Price T also tends to lead to tacit collusion where hospital prices converge or what is the price ceiling increasingly becomes the price floor.

More specifically, price T presumes B2B or business-to-business transactions, here moreover ERISA plan – hospital contracting, are the product of a functioning hospital market. Based on this false assumption, price T skips passed B2B to B2C, or to the business-to-consumer market where the consumer is expected to identify favorable hospital prices. 

It is well-documented hospital concentration/consolidation has erased competition. There are simply price setting hospitals and price taking plans and patients or consumers. It’s no surprise that commercial plan hospital rates are on average north of 250% of Medicare and rates for common procedures can vary ninefold across hospitals.    

For these reasons, when evaluated from a health equity perspective, price T disproportionately places the responsibility and burden on poor and rural patients. (As an aside, this year the Congress invited at least 11 expert witnesses to provide price T testimony.  None addressed and/or had health equity expertise.)     

Among other substantial cognitive and financial burdens, these populations are already time poor, likely already face healthcare-related financial burden or vulnerability, experience higher rates of emergency care, have comparatively limited health literacy particularly when faced with opaque and intimidating cost estimates, are frequently confronted by a digital divide in accessing online estimator tools or downloading multi-gigabyte machine-readable files requiring broadband internet. For these and other reasons their response frequently is to delay or forgo care altogether. As a de facto buyer-beware mechanism, price T can act as a deterrent.

Price T also assumes geographical density and provider substitutability. In rural America single hospital systems or Critical Access Hospitals (CAHs) often serve as the sole provider within a ~100-mile radius. For a rural county resident, knowing that a hospital 75 miles away charges $250 for an MRI is largely irrelevant. Geographic distance, lack of public transit and travel costs negate price differentials. Imposing strict price T compliance requirements backed by increasingly severe civil monetary penalties for non-compliance can unintentionally strain negative margin rural providers by in part diverting personnel and capital toward maintaining data feeds.

For these populations particularly, with nowhere else to go, price T is a paradox. With information without options, it’s an oxymoron. With transparency in a concentrated market, it’s a distinction without a difference, serves as a signal for dominant hospitals to drift toward higher prices or a is non-sequitur by attempting to apply a demand side shopping remedy in a supply side monopoly. Price T can however serve as an essential prerequisite allowing even the most vulnerable to shop their way to affordable healthcare if it is paired with guardrails that create a functioning market or one with systemic accountability. This can be accomplished if the Congress decides to take the necessary step and like emerging drug pricing policy require the use of external reference pricing.  Hospitals or any supplier cannot be allowed to control price and also serve as an objective judge of it.    

David Introcaso is a healthcare research and policy consultant based in Washington, D.C

By EMANUEL SARKEES

Most people have never heard of prior authorization until it personally stops them from getting care they actually need. The way it usually goes is pretty straightforward: a doctor sees a patient, figures out what is wrong, decides on a treatment, and writes the order. Then everything stops. Before anything can actually happen, the insurance company has to sign off. What makes this so frustrating is that it is not really one problem. It is a bunch of problems stacked on top of each other, where each one makes the next worse. Doctors lose hours, patients lose access, outcomes suffer, and the people who built the system are not the ones dealing with what it does to real patients.

Insurance companies say prior authorization is about preventing unnecessary care and keeping costs down. That argument has some logic to it on paper. But what the process actually looks like day to day has very little connection to that original idea. Doctors are drowning in paperwork, patients are waiting on treatments their physicians already approved, and outcomes are worse because of delays that did not have to happen. It was built to contain costs. What it is containing instead is care, and the patients on the receiving end had no say in how any of it was designed.

How It Works and Why It Doesn’t

A physician submits a request to an insurance company before prescribing a medication, ordering a procedure, or sending a patient to a specialist. The insurer looks at it and decides yes or no. That decision is supposed to come from a qualified medical professional who actually reviews the clinical picture. The data suggests that is not really what is happening.

The AMA’s 2025 physician survey found that the average doctor handles 40 prior authorization requests every week, eating up roughly 13 hours of their time. Almost two full working days every week are spent on paperwork instead of patients. Ninety-five percent of physicians surveyed said prior authorization gets in the way of necessary care. Seventy-nine percent said patients give up on treatment entirely because the process is too much or the approval never arrives.

What that produces is not an inconvenience. It is documented harm. A Johns Hopkins systematic review from September 2025 went through 25 studies and found prior authorization tied directly to disease progression, unnecessary hospitalizations, longer hospital stays, and lower survival rates in cancer patients. One in four physicians said a prior authorization delay had caused a serious adverse event for a patient, including permanent impairment or death. A RAND analysis from July 2025 pulled specific cases, including a kid with newly diagnosed Type 1 diabetes waiting in a hospital bed for approval on basic insulin, and an infant in respiratory distress turned away because a medication that was not even indicated had not been given first. These are not flukes. They are what happens when administrative decisions consistently override clinical ones with no real accountability in the process.

Who Gets Left Behind

Prior authorization does not land the same way for everyone. Low income patients and Medicaid patients face the highest denial rates and have the fewest realistic options when a denial comes through. Appealing takes time, paperwork, and persistence that is hard to maintain when you are working multiple jobs or dealing with a language barrier. For a lot of people the appeal never gets filed. The treatment gets dropped.

A 2025 KFF Health Tracking Poll found that 58% of insured adults who needed specialized care ran into a delay or denial because of prior authorization. For lower income patients that number is higher, and the consequences are more serious because there are not many alternatives when the answer is no. This fits a pattern that keeps showing up across American healthcare. People without insurance face it when they cannot afford to walk in the door. Low income patients face it when something is technically covered but impossible to access. Insured patients now face it when their doctor has already made the call and an insurance company decides differently. The wall keeps appearing in different places. It keeps stopping the same people.

The Promises Being Made

Some things have actually changed and it is worth acknowledging that.

In June 2025, around 60 health insurers committed to streamlining prior authorization, with changes rolling out through 2027. They pledged to reduce the number of services requiring authorization, standardize electronic submissions, and make sure clinical denials get reviewed by an actual licensed clinician.

In April 2026, CMS put out a proposed rule extending electronic prior authorization to prescription drugs, setting faster timelines for Medicare Advantage and Medicaid, and for the first time requiring insurers to publicly report approval and denial rates. That transparency piece matters. There has been suspicion for years that denial rates were high and timelines were being stretched. Now there will be numbers.

The issue is that only one in three physicians thinks the pledge will do much. That skepticism comes from experience. The insurance industry made almost the same pledge in 2018 and it changed almost nothing. The new CMS rule does not eliminate prior authorization, does not limit how many services can go through it, and does not touch commercial fully insured plans where most privately insured Americans actually sit. It also lets insurers pause decision timelines by requesting more information, which payer teams have already figured out how to use strategically. Eleven percent of prior authorizations have been cut since the June 2025 pledge. Eighty-nine percent of the burden remains.

What Needs to Actually Change

Pledges and better filing software are not going to get this done. Three structural changes would actually make a difference. First, gold carding needs to become a federal standard. Physicians with a strong track record of appropriate prescribing should be exempted from prior authorization for certain treatments. Arkansas, Texas, Colorado, and others have already done this, and it cuts administrative burden without increasing unnecessary care. Right now it is inconsistent and state dependent. A federal requirement fixes that.

Second, the CMS rule needs to cover commercial plans. Self-insured employer plans fall under ERISA and are largely outside CMS authority. That covers most working-age Americans. Leaving them out is not a minor gap.

Third, transparency needs consequences. When an insurer’s denial rates are consistently out of line with clinical standards, that should trigger regulatory review and real penalties, not just a published number that most patients will never find.

If none of this happens the direction is not hard to predict. Physician burnout keeps climbing, with prior authorization already one of the leading causes. Patients keep walking away from treatment when the paperwork gets to be too much. The people with the fewest options keep absorbing the most damage. And the costs of prior authorization are supposed to keep landing in emergency rooms and late stage diagnoses that end up costing the system far more than the denied approvals ever would have.

Prior authorization was supposed to make healthcare run better. What it built instead is a system where clinical judgment gets overruled by paperwork, where patients lose access because a form had an error or a deadline was missed, and where the people least able to fight back absorb the most damage. The insurance industry has responded by promising to do better. The doctors treating those patients are not convinced. Based on the track record, it is hard to say they are wrong.

Emanuel Sarkees is a high school student with a strong interest in medicine, healthcare, and innovations that improve patient care and access to treatment

By KIM BELLARD

I was amused – oh, I should be polite and say “interested” — to see a new study, led by researchers from Yale School of Public Medicine, about the benefits of a universal single payor health system. It concluded that we could save 100,000 lives annually and save some 1.04 trillion each year – some 20% of our health care spending. What’s not to like? I’m sure Bernie Sanders is already drafting the bill.

The savings come from five sources: using Medicare payment rates for all providers, using “international reference pricing” for pharmaceuticals, reducing administrative costs to Medicare’s levels, reducing fraudulent billing (“consistent with the experience of other single-payer transitions”), and reducing emergency room visits and hospitalizations due to improved access to primary care.  Good goals, all.

Steffie Woolhandler and David Himmelstein, among others, have been making these or similar arguments for decades, and they are not without merit. It is shameful that we don’t have universal coverage. It is distressing how much money we spend on healthcare. It is embarrassing that we spend so much money on administration.  It is maddening that so many people don’t get the care they need, get the wrong care, or get their care in the wrong places/at the wrong times.

We could do better, we should do better, but, if anything, we’re doing worse: more people are losing coverage, more providers are going out of business, our rates of chronic (and some infectious diseases) are going up, and we’re dying sooner.

I want to quickly point out some of the problems with the proposed sources of savings, then discuss other courses of action that might lead to these or even better outcomes.

• Medicare payment rates: yes, a lot of money could be saved by using Medicare payment rates, but I doubt you would find many providers who would say they could survive. They make their money on private insurance rates, are lucky to break even on Medicare rates, and lose money on Medicaid. This one is not going to happen.
• International pharmaceutical reference pricing: first, I’m not sure such a thing exists. It is true that drug prices are typically lower in other countries. Both President Biden and President Trump seized upon this, with some signs of modest success. But, as with the Medicare pricing, it would be a shock to the pharmaceutical industry to have prices slashed across the board, wiping out trillions of dollars of value and, oh-by-the-way, eventually reducing investments on new and better prescriptions.
• Administrative costs: as a percentage of spending, Medicare’s administrative costs are lower than private insurance, but that is partly due to Medicare spending per capita being so much higher. Also, costs incurred by other agencies – e.g., Social Security or the IRS – are not always counted. But certainly the complexities of so many plan designs by so many health insurers while tracking the current eligibility of everyone is a cost that is much higher than it should be.
• Reducing fraudulent billing: I mean, really: do people really think that Medicare does a better job of reducing fraudulent billing than United Healthcare or Anthem, much less than other countries?
• More primary care: reducing emergency room visits and hospitalizations has been the goal of countless private health insurance efforts, such as disease management or chronic health programs, and the track record has generally been underwhelming. But the real problem is – where are we going to get all the primary care physicians to handle all the underserved people?  

So, much as I agree with the goals, count me a skeptic that single payor is going to magically make everything better.

Here’s where I inevitably turn to AI.

An article by Alex Janin in The Wall Street Journal marveled at how “AI Is Helping Patients Solve Medical Mysteries.”  Ms. Janin writes: “AI can be especially adept at flagging potential rare and hard-to-diagnose diseases, which may otherwise go undetected for years because doctors don’t often see them.”

That’s the kind of use AI advocates have been promising for years, and it is exciting to see this use finally bearing some fruit. For the small percent of patients with these kinds of diseases, AI can literally be a lifesaver, but let’s remember that they are a small percent. When I read the article, I keep thinking about bigger problems I want AI focused on. E.g.,

• Flagging fraudulent and/or duplicative billing;
• Identifying both unnecessary tests and procedures and the providers who most commonly perform them;
• Identifying providers who deliver sub-standard care.

Want a more efficient/effective healthcare system? Let’s start there. The savings potential may not be as gaudy as Yale’s $1.04t, but these would not require as massive an upheaval.

While I’m at it, I want to bring up another AI-related area of healthcare. The not-so-hidden but too-little discussed secret of U.S. healthcare is that we have a lot of third world outcomes, largely in lower socioeconomic households and disproportionately impacting people of color.

Sure, we can put in single payor, but will that solve the problem of rural Mississippi or south side Chicago? Too many people don’t have access to clean air, clean water, enough food, adequate shelter, or accessible/affordable healthcare. The great lesson of 20^th century U.S. healthcare was not the gains from new medicines or more hospitals/physicians, but in public health efforts like improved sanitation and more immunizations.

So where are our investments in 21^st century public health? Do we want to make marginal improvements in the health of the middle/upper income households, or dramatic improvements in lower income households?  I suspect I know what this Administration would say, and they’re wrong.

By every measure of income inequality or social mobility, we’re in a have/have not society, and there is every reason to believe AI will make that so, so much worse. It’s going to be NAFTA but much worse. But I always remember: NAFTA didn’t cause all those jobs to go abroad. Those jobs went because U.S. CEOs chose to send them abroad, in order to make them and their stockholders richer. Think they won’t do the same with AI?

That’s why I firmly, fiercely believe we need some sort of AI tax to help make the adjustment to the new AI world. The financial gains from AI need to be broadly distributed, and one of those distributions has to be for addressing our third world health outcomes. That could be through 21^st century public health investments, and/or through some sort of universal basic income (UBI).  

Universal coverage might be nice, but an AI tax for public health and universal basic income might be necessary.  

Kim is a former emarketing exec at a major Blues plan, editor of the late & lamented Tincture.io, and now regular THCB contributor

By MATTHEW HOLT

Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is the last for now of a multi-parter! Part 1, Part 2, Part 3, Part 4 Part 5

By now I have met with expert physicians and their teams at 5 major medical centers (UCSF, Stanford, Cleveland Clinic, Cedars Sinai & West Virginia University). I have spent hours talking to the AI gods at Claude, ChatGPT and Inciteful Med, annoyed the hell out of all the cardiologists and other doctors I know, and basically got enough contradictory advice that it’s all up to me.

The main decision comes down to whether I should get a TAVR or the RAVR. And because I approached Cedars about the BELIEVERS clinical trial rather than going direct to Dr Makkar, they put me into that process. The trial randomizes patients into either TAVR or RAVR, likely performed by Dr. Dominic Emerson who is the Director of Robotic Cardiac Surgery, Smidt Heart Institute, and one of the surgeons mentioned by Dr Badhwar. (I had a quick chat with him after he called me while I was on a ski boat in Lake Tahoe, although due to the shoulder pain I had not gone wakeboarding!)

The study documentation stressed – and this was backed up unprompted by one of the study coordinators – that I could back out at any time. So if I were randomized into the RAVR cohort, I still had the choice to pull out and ask Dr Makkar to do a TAVR on me anyway, or of course go to West Virginia and get surgery there.

And of course there is still the question of how risky a TAVR on my valve will be. I did take Dr Yeung’s advice seriously, and a study that Dr Makkar oversaw back in 2020 did show that (for patients considerably older than me) the risk of all cause mortality at 2 years in bicuspid valve TAVR patients was higher with bad calcification (like me). On the other hand, Dr Makkar told me that his unpublished data between TAVR and SAVR at 5 years showed no difference. He also directly told me that I was a good candidate for a TAVR and he has done more bicuspid TAVRs than anyone else. He’s also working on techniques that break up the calcification on the “join” before the TAVR, although it’s unclear if he’ll do that in the BELIEVERS trial and to me

I originally wanted a TAVR because it was a much easier recovery than surgery. I also have two more major surgeries to go through within the next few months, and it would be a big stress on me and my family to make that three. Plus, I both would be happy to contribute to a medical study and am pretty confident that in a decade or so, cardiology will have advanced a lot more and I probably wouldn’t need open heart surgery even if the TAVR valve fails sooner than the 10-15 years I am hoping to get out of it.

So I crossed my fingers and hoped that the computer would randomize me into the TAVR group at Cedars and obviate the need for any uncomfortable decisions about pulling out of the trial. And it did. I’ll be getting it done in early September.

This isn’t exactly Lebron James making The Decision, although that show lasted only 75 minutes and also went on way too long!

Some concluding thoughts

I would obviously rather have not had to write this little memoir. But given I went through it, there are several conclusions smacking me in the face.

• If you have a relatively uncommon condition, you are likely to be steered into mainstream treatment. If I had been passive – well not so passive I didn’t get the first echocardiogram – I would have been sent down the path to mini-sternotomy at UCSF. Nothing wrong with that of course, especially as it does fit the current guidelines, but the level of information I was given about alternatives was low. Now UCSF is not regarded as an aggressive hospital overall. Twenty years ago it was famously compared by the Dartmouth Atlas with UCLA which is regarded as a more aggressive medical culture. 

Among academic medical centers, the most striking differences were those between UCSF and UCLA. UCLA, like many other hospitals in the Los Angeles region, managed chronic illness aggressively. Compared to UCSF, UCLA patients spent 45 percent more days in acute care hospitals, used 3.5 times more days in intensive care and were 1.5 times more likely to have been admitted to an ICU during the hospitalization in which they died. They experienced 71 percent more physician visits and 37 percent more frequent referrals to ten or more different physicians. 

• But I do think that the medical culture there (and probably elsewhere) remains pretty paternalistic and automatic.

• No one is navigating for you. I didn’t know enough at the start of my journey to ask, but no one provided me with the landscape of the five different techniques used for valve replacement. It would have been great if someone at UCSF had laid that out at the start, and discussed the pluses and minuses of what I eventually had to do myself. Possibly Included Health, Transcarent or Quantum Health or some other navigator might have laid that out, but no physician or system I met did it.
  

• Insurers’ care management is a joke. Neither Blue Shield nor Cigna contacted me or offered anything at all about this journey. In some ways I appreciated that as I saw no denials of care, and every step was automatically pre-authorized, even though Cigna and UCSF did cause me a lot of stress with their potential mid-year divorce. But Cigna also sent me a stupid letter approving surgery for a period when I was never going to have surgery, and at Stanford pre-approved a CT angiogram FOUR days after they had just paid for an actual angiogram, and paid $832.60 (of which I owe a smidge) for an EKG that was I’m sure the same as one done at UCSF less than a month earlier and was never mentioned in the consult I had there. (I will be writing a post script of what all this cost later but suffice it to say my maximum out of pocket has been easily reached).
  
  
• AI is super helpful but it doesn’t know everything and it doesn’t lead you. The general consensus is that the combination of the bicuspid valve and my age means I would routinely be sent for SAVR, but none of the AIs laid it out for explicitly me at the start. I was putting everything I got into AI (mostly Claude but also ChatGPT and Inciteful Med). ChatGPT did lay out the alternatives and it did tell me that usually I would be a candidate for SAVR because of my age. But Claude told me after my Gated CT on Jan 16 that I was an excellent candidate for TAVR because my arteries were in great shape, and I was really surprised when UCSF Cardiology told me that this wasn’t a straight choice by the patient and they wouldn’t do a TAVR on me. Claude also told me that Dr Amy Fiedler did RAMT surgery, when she didn’t.
  
  But on the other hand, the ability of the AIs to ingest all my medical data, imaging reports and more and tell me exactly what they all meant was in general pretty incredible compared to what patients experienced before 2022 (or whatever we are calling the ChatGPT birth!). I am very glad I have their help. And if anyone going through anything similar wants to read the reams of conversations I’ve had with the AIs, let me know and I will share them

• Getting to second opinions is challenging. My PCP at One Medical referred me to UCSF which went smoothly. Past that everything was a struggle. Stanford and Sutter both demanded referrals, even though my health plan is high-deductible PPO that doesn’t need them. Everyone needs access to your imaging, but is happy to reproduce it–after all they get paid twice. It took a lot of effort for me to get it to various centers (particularly Stanford) even after UCSF put it all up online for me to share. And I was also very unclear how the different centers got access to the images, via my sharing or directly. Then just this month Epic announced that it will put images in Care Everywhere which hopefully means that this conversation will be unnecessary from now on and any clinician at any center using Epic (including all the ones I went to) can just look them up on their monitor.
  
  But worse than that, the patient has to endure so much time on hold, so many back and forth emails, and so much uncertainty. Incredibly even though Epic has built in messaging, you’re unable to use it with some centers (hi, Stanford!) and not to do what appear to be easy things (setting appointments, sharing images or results) with others.
  
  Between talking to cardiologists, PAs, NPs and surgeons, I think I had 12 separate appointments (both in person and virtual), not counting the imaging and the angiogram, and I think half of them could have been done via email, and at least one (with transplant surgeon Dr Fiedler) shouldn’t have been done at all. The charges paid for all of them also didn’t relate much to time spent–more on that to come in another article.
  
  But in the end I really wanted yes or no answers, the main one being “will you do a TAVR on me?” And it took setting myself up in five different systems to get to the answer. Special shout out to Dr Badhwar’s team at West Virginia who were by far the quickest to get back to me, and get me in front of him. And a raspberry to the team at Sutter Alta Bates who still haven’t gotten back to me even though I faxed them the referral (which they had already been sent previously) 3 weeks ago! None of this is made to be easy for the patient–even one as bloody minded and motivated as me.

• The clinical professionals are superb and gracious. I would be remiss if I didn’t end on this point, as it is the most important. Every single clinician (and for that matter, med tech and support staff) I met with during this journey was polite, gracious and incredibly talented. I was reminded of my old mentor Ian Morrison’s line about academic medical centers being “islands of clinical excellence surrounded by the department of motor vehicles”. I certainly had my share of clinical excellence while dealing with the bureaucracy. But I would have been extremely comfortable putting my life in the hands of any of the physicians I met. And that after all is what this is fundamentally all about.
  

I shall try to get out a post-script to this piece about my Pre-Surgical Complications delving into what it all cost before I get the procedure. But otherwise, hopefully you won’t have to hear too much about it until I am out the other side. Unless of course you want to bring me some grapes in Cedars in LA in early September!

Matthew Holt is publisher of THCB

By MATTHEW HOLT

Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is a multi-parter! Part 1, Part 2, Part 3, Part 4

Claude told me that Dr Amy Fiedler at UCSF was an expert in RAMT (right anterior minithoracotomy–the non endoscopic rib entry technique). I sent a note to my original Cardiology group on the UCSF MyChart system saying that I understood she did this surgery and could I have an appointment with her? You can see from my messages with them below that the appointment was set up. 

It should not have been.

I had a very brief conversation with Dr Fiedler and almost immediately it became apparent I was wasting her time.  She told me she does not do that RAMT surgery for valve replacement and she specializes in heart transplants, and some other specialized heart surgery. I think that Claude had read the web page about her doing minimally invasive cardiac surgery and put 2 + 2  together and made 5. But to be fair her UCSF webpage didn’t give me the level of detail she gave me in the video call, and the UCSF cardiology team set up the call even though I presume someone there knows that she didn’t do the thing I was asking about. 

To be clear, Dr Fielder was very gracious and very helpful in her advice. I just felt bad for wasting 15 minutes of her time. To reiterate, the time of a cardiac surgeon is way more valuable than mine. I left telling her I hoped I would never need her services!

***

Next stop was to drive down to Palo Alto and pop into the Creamery for a chocolate malt and cheeseburger in advance of meeting Dr Yeung, the cardiologist. The med tech did a four limb blood pressure test on me and also a full 12 lead EKG. I of course had had all that earlier at UCSF, and wasn’t sure why I was having more. But anyway, she soon left saying Dr Yeung was coming.

Instead Dr Anson Lee came in. He’s the cardiac surgeon working on the valve team. He basically told me that Dr Yeung wouldn’t do a TAVR on me. Now I wasn’t expecting to see him (nor did I know who he was till I looked him up after he left the room) but we had a very helpful conversation about valve surgery and the best ways to do it. Then he went and got Dr Yeung. Together they pulled up a colorized 4D CT scan of my valve. (I assume it came from the CT I had in January). Dr Yeung showed me in precise detail why he thought giving me a TAVR now was a bad idea. (Basically too much calcification on the fused part of the leaf, and it’s too oval, which would make the procedure risky and likely not fit properly). He told me that if I had the surgery, someone would easily put a TAVR in my surgically implanted valve in 12-15 years, and that’s all I would need–unless I plan on living forever or to 100!. 

Dr Lee told me that if he was getting it done he’d have a full sternotomy, although he actually does mini-sternotomies. He also was the only person thus far to tell me NOT to do it if I am asymptomatic. His logic is that something like 1/150 patients die during the surgery so don’t have it if you don’t need it (i.e. are asymptomatic). The reason he’d want a full sternotomy for his choice of entry was to give the surgeon the least complicated shot at the valve. 

He also said that his mini-sternotomy patients can drive after 2 weeks, not 4-6. Which seems to contradict what the UCSF team told me about the same procedure.

But in my case, needing knee surgery and shoulder surgery, the shock of those on the heart would count as “symptoms”. So Dr Lee told me I should get the surgery if I was going to get the shoulder or knee fixed. But he also said that the higher echo reading might have been a false negative, and it might be years before I have symptoms.

I’m not sure my trip to Stanford left me much clearer. But the chocolate malt was damn good.

***

Next up was connecting with the oft-cited team doing RAVRs at University of West Virginia led by Dr Vinay Badhwar. Both Dr Lee and Dr Fiedler unprompted said that he was the surgeon when it came to the robot valve replacement and his email was available online. (Most doctors don’t make their email easily available). I had Claude write an email describing my clinical situation and sent it to him late one night. 

The next morning before I got up, there was a reply from Dr Badhwar in my inbox, and shortly thereafter, his team was all over me. They got my information, got access to my imaging at UCSF, and his physician assistant Amy Simsa called me a day later to describe the process. Within a week I had a video consult with Dr Badhwar and his team. In terms of responsiveness they were by far the best organization to deal with. Stanford, UCSF, Cleveland, Cedars et al could take a few lessons!

The only slight wrinkle was that I got a robocall on a Sunday from the facility telling me where to check-in to my appointment–clearly not set up for telehealth. I noted this in a brief email to his office and got a reply from a human (who I will not identify to spare their blushes) at 5.15pm on a Sunday night! I’m not sure they’re not working too hard.

Although Dr Badhwar was very modest and very keen to tell me about others working with him as he spreads the gospel of RAVR, he and his team have clearly done more of these more successfully than anyone else and are the world experts. If I want a RAVR it’s almost certain that I have to get on a plane, and so I will likely end up in Morgantown, WV–which is about an hour south of Pittsburgh for those of you who missed geography day in high school. That’s not a sentence I thought I would ever write!

***

My last (for now) call was with the CEDARS team setting up the BELIEVERS trial. I spoke with Dr Raj Makkar. He said he had done 8,000 TAVRs and more than anyone else on bicuspid patients. He disagreed with Dr Yeung and Dr Elmariah. He says that my valve was suitable for a TAVR, and he said that the risk of stroke during TAVR was less than the risk of death from SAVR. He also said that they are about to publish 5 years of data showing that the resilience of TAVR valves was the same as SAVR valves. He suggested using a 26mm valve on me, and that it would likely last 10-12 years, and that not only would he be able to do a TAVR in TAVR on that one, but he had already been doing 3rd TAVR in TAVR in TAVR. 

I asked if I showed up at his clinic but not for this trial would he have done a TAVR on me? He said emphatically “yes”. He does use the Sentinel Cerebral Protection System which essentially captures any calcification dislodged from ascending up the aorta to the brain, although my friend Claude tells me the data on whether that prevents a stroke is murky.  Frankly Dr Makkar was very self assured and had I met him at the start of this journey I wouldn’t have bothered going anywhere else! Of course, because he wants to do the trial and get that data out in the world, he wants me in the trial, and I might be randomized into the surgical group.

This is I hope the end of the pre-surgical part! With the slight exception that I haven’t actually yet made a decision about what to do!

UPDATE: Now I have made a decision in Part 6

Matthew Holt is publisher of THCB