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

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

Getting in touch 

But while knowing this stuff may be simple, actually getting to speak to the people at these medical centers is way more complicated. First you have to set up the data.

I knew they would want to see my images. The good news was that although I couldn’t see any of the images in my UCSF MyChart account, there’s a number to call on the bottom of the reports if you want to “download the image” and a very nice tech was able to upload all my images to a website that I could see called AmbraHealth (now part of Intelrad) within a couple of hours. Now I can share them with other people similar to sharing a Google doc.

But that was the easiest part.

I will spare you the blow by blow account but for example it took a long time for the people in the office of the main investigator at Cedars to figure out who the person managing the trial was so they could put me in touch with her. After I finally got to leave her a message she rang me back. I played phone tag with her for about a week. I did end up getting her email and sending out a bunch of my image reports and then she went on vacation and I didn’t hear from her for two weeks. First contact to appointment took 6 weeks.

At the same time I was trying Stanford Cardiology in order to try to get an appointment with Dr Yeung. First time I called after about 10 mins on hold I was told that I needed to have a referral. (Even though I’m on PPO style plan that doesn’t need one). 

I pinged my long suffering PCP team at One Medical and asked them for a referral to talk to Dr Yeung which they sent out. A few days later I called the cardiology team at Stanford and eventually – I mean eventually, it was literally a 10 minute hold – they told me the referral wasn’t through yet. I asked if I could get them some images in advance, they said no. They were able to set me up on MyHealth which is their equivalent of the Epic’s MyChart. Funnily enough they had information on me from an emergency room visit I made there in the 1990s. But because I did not have an appointment set up yet I was not able to communicate using the messaging function on MyHealth. 

So I called back a few days later and after another seven or eight minute hold I was told that I had an appointment set up for me and it was on MyHealth. But bizarrely the referrals and visits are buried in the “billing” section of MyHealth and then the appointment was on a sub-menu! And of course even though I could see it there was no way to communicate about the appointment. 

This was even stranger as Stanford booked me both an echocardiogram and what’s called a CT angiogram which is a non-invasive angiogram using a CT machine. I had had both of these done at UCSF within the previous month.

I called yet again and got a hold of somebody who then passed me on to somebody else. After another 16 minutes on hold I was told that if I had these images I could upload them to the Stanford system, and they would send me an email explaining how. 

I received that email 2 days later so I dutifully downloaded about 20 gigs of images from the UCSF system to my hard drive and then re-uploaded them to Stanford. Which of course was using the same Ambra Health system. On both UCSF Health & Cleveland Clinic‘s version of MyChart there’s the ability to both send a message and upload images from other facilities. Stanford Health Care‘s version has neither. 

Meanwhile 4 days after it processed the claim paying for my angiogram at UCSF, Cigna sent me a letter saying that it had pre-approved the CT Angiogram at Stanford! Not exactly sure they.were being good stewards of their clients’ health care dollar. And of course the Stanford team didn’t need to do that test.

After I sent the PDF of the imaging reports to various people including Cleveland Clinic and Cedars they were able to make the requests directly to UCSF so they could access my images and I was also able to share those images from Ambra Health via email.

Going back to Stanford, after I uploaded all the images I got no communication back from Stanford. With only a week or so before my appointment there I was still due to get all this excessive imaging which I’d already had, which was incidentally going to cost somebody a lot more money. I called Cardiology at Stanford again, and eventually got through to somebody within “appointments” who said that they would look into it. They finally called me back and said yes that I did not need to have the imaging because they had the reports & the images from UCSF. 

By the way, now that I’ve had the meeting at Stanford and seen the images they have, I think they have extra images that I don’t have in my Ambra Health server that they received directly from UCSF and are somehow sharing in a way I don’t understand. 

Of course I was told nothing about this at any stage and had to be the one to instigate the entire thing.

So the image sharing seems to work behind the scenes but is opaque and confusing to the patient who is just trying to help! These images are outside of the main Epic system and require a bunch more steps both to be made available to the patient and for other doctors to see from other institutions. 

And of course some institutions are worse. For example Sutter Health in the East Bay told me that I could not send them a link to the images because that would be a HIPAA violation. Oh yes that one’s never going to die, untrue as it is.

They wanted me to bring a CD with me. (Of course I don’t have a CD as UCSF put them online!)

The patient load

The amount of phone calls I’ve made and time spent on hold when it could have been handled by asynchronous messaging or AI voice agents is staggering. I’m almost addicted to that Cisco hold music.

I made a rather grumpy LinkedIn post about Stanford cardiology suggesting that, given it was in the center of Silicon Valley and there are about 50 companies selling voice AI customer service agents located a stone’s throw away, perhaps making patients stay on hold for 15 minutes to find out very basic stuff about the information or what images they could send around was not the best way of using their time. 

You would think that Stanford Health Care would have an AI agent to answer your call, center of Sili valley and all that. You’d be wrong. 16 minutes on hold so far…. and no ability to message them about the issue (getting them imaging from UCSF) in their MyChart variant 

 1) No agent on their end is able to talk to you or deal with a basic inquiry. A never ending phone tree that gets to someone who then has to transfer you. Given the number of voice AI companies within a stones throw of Stanford, it’s hard to imagine it’s the best they can do

2) When after 16 mins I get to the patient coordinator all she can do is tell me that they can send me an email with a link to upload images to. But she can’t do that —  she has to send a message to someone else.

I even had a couple of Stanford AI and clinical people respond, but I doubt much will change soon.

Speaking to real doctors and their teams OR the data is inexact or wrong 

During this whole process I’m talking to ChatGPT, Claude and Inciteful Med trying to figure out what the AI god knows about who does what. When it started to mention the open surgery through the ribs a number of other names came up, most prominently a group at the University of West Virginia that has endoscopically done a lot of what’s called robot assistant valve replacement (RAVT).

After a number of calls with Cardiology at Cleveland Clinic and their patient journey nurses I eventually heard back from Dr Koprivanac’s NP. He had not done very many of the throat/transcervical robot assisted replacements, only about 15 over the last year. And sadly he didn’t think I was a candidate for that. He did think I was a candidate for the rib entry RAVR, although to be honest he hadn’t done that many of those either. But I spoke to his team and agreed to get a provisional booking on his schedule for the fall even if I knew I was unlikely to go through with it.

Meanwhile 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? The appointment was set up. 

It should not have been.

(Part 5 is here)

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

The first thing was to message the cardiac scheduling team to postpone the surgery set up for July, not least reason being because England was going to be in the World Cup final two days after that and I didn’t want to be in intensive care in case they weren’t showing the game. Yes, yes, I know Messi and the cheating FIFA refs made sure that sadly didn’t happen! 

I agreed with them to put a date on the calendar for September. But that didn’t stop a prep nurse calling me on Monday 29th June asking me about surgery on July 17th. She was most surprised to find that it wasn’t happening. Yet another time when the message didn’t quite get through.

Time to really figure out what this heart surgery involves. 

Essentially if I wasn’t watching soccer from late June onwards I was trying to figure out what was known about valve replacement surgery. It was actually hard to find out both what the data is regarding TAVRs and the varying ways that surgical valve replacement can be done. 

It turns out that going in through the chest bone, known as sternotomy, is the most usual way to do the surgical replacement of the heart valve but it’s not the only way. 

This discovery took me a lot of effort not only asking chatGPT and Claude about the process but also trying to figure out who does what. I also spent a lot of time asking for advice and honestly not getting much useful on the ValveReplacement SubReddit and looking on heartvalvesurgery.com, a website that seems to be sponsored by some surgeons and medical centers but is run by a patient called Adam Pick. I have been down the rabbit hole there and on YouTube and have more or less had to figure this out myself.

I was also reminded of the classic 1996 Fortune piece by then Intel CEO Andy Grove who was trying to figure out which approach to use to treat his prostate cancer. Basically he realized that the radiologists and the surgeons didn’t talk to each other and didn’t compare results, and he – the patient – had to figure it out from the rather poor data available, and talking to other patients on Compuserve! Well, it was 1996.

It turns out that there are several different options possibly available to me. But in terms of coordination and the patient journey, I’m not sure that we’ve come a long way since Andy Grove’s piece 30 years ago.

The TAVR is about 15 years old. It’s still primarily used in those over 70 who could not easily recover from or survive open heart surgery. But it has a ton of advantages. You’re out of hospital in one day, not 4-5. You’re not put on a heart-lung machine, and the skill required to get the exact placement correct will soon be aided by AI and micro robots like this one from Carvolix. 

But there’s no really good data about whether the valves inserted by TAVR last as long as the similar tissue valves inserted via OHS.

So yes, it’s the old health care story. There’s not enough data.

And then there’s the actual valve problem that I have. There are two groups of people with aortic valve problems 

The first of those have some kind of genetic issue and if you read Reddit you’ll find a lot of people in their 20s and 30s who have had mechanical as opposed to tissue valves implanted because they need to last a very long time. These people were not as lucky as me getting all the way to their 60s without discovering the genetic defect, but actually the estimate is that about half the people with bicuspid valves like me actually die with them not because of them. 

But the bicuspid gang are a small minority. Most people needing a valve replacement have a regular tricuspid valve – it kind of looks like a Mercedes symbol – but over time either it wears out or they get excessive amounts of calcium deposited on it. Those are the ones who used to get open heart surgery in their 70s and ’80s and now get a TAVR because it doesn’t really matter if that valve only lasts 10 years.

If you look at the number of aortic valve replacements done in the US, the vast majority are now done on those older people via TAVR. In fact Medicare which only would pay for it for those over 70 just changed its guidelines in June 2026 and will now pay for anybody over 65. 

But in my case not only do I have a Bicuspid valve but it is heavily calcified on one side. This leads to the concern that the valve is oval shaped while the replacement artificial valve is round and therefore may not fit very well. 

The consensus seems to be that the younger the patient the worse the TAVR valves do, and that bicuspid valves are particularly poorly suited for TAVR. Meanwhile, if you are rabbit-holing Youtube looking into clinical studies that might matter greatly to you, this kind of statement isn’t really what you’re looking for!

“We have to be careful, these are only up-to-one-year follow-up outcomes, so kind of short-term outcomes. It doesn’t say anything about the long-term outcomes, because that’s still a whole other story. Also, by the way, we don’t have any data in the literature beyond two years of TAVR bicuspid — believe it or not, we’ve already been doing this for quite some years in many centers worldwide — TAVR bicuspid, and we don’t have any data on TAVR durability beyond two years.”  Cardiolgist Ole De Backer in 2024 

On the other hand there is just not very much good data about TAVRs in bicuspid patients, and in fact I found out from the Heartvalvesurgery.com website that Cedars Sinai is about to start a trial about TAVR for those patients.

Then there is the mini sternotomy I was offered at UCSF. I was told no driving for 4 weeks after surgery and that the chest bone will still take 8 to 12 weeks to heal. 

A much smaller minority of valve replacements are done by accessing the heart through the right rib cage. The initial way this was done was by putting a pretty big incision between the ribs and moving them out of the way. Having lived through the pain of a broken rib a few years back, I’m not sure this sounded a lot less gentle than going through my sternum. But I looked into it and Claude told me that there was somebody at UCSF who did this and also that there was a group in West Virginia doing RAVR (robot assisted valve replacement) on an endoscopic basis.

And looking on heartvalvesurgery.com there was a video about a surgeon at Alta Bates in Oakland (near me) who did endoscopic valve replacement also via the ribs.

Finally, Cleveland clinic put out a news report about a year ago about one of their surgeons who had an entirely different technique for valve replacement, using a transcervical approach, essentially going in through the neck. The recovery from that seemed super quick–just a week back to normal activity.

So for those of you counting at home there is the TAVR and potentially five different surgical techniques. Because of the success of the TAVR, there’s just not that much “demand” for surgical replacement or for developing better ways of doing it which is why only a limited number of surgeons do these non-sternotomy techniques.

What does the poor patient do?

The UCSF Cardiac team machine process rolled on. I was given an appointment for a carotid ultrasound and then for a full angiogram. Both to see if I had “traditional” heart disease. Despite decades of bad American diet it seems that a few years of statins did their trick and I don’t actually have any. 

Worth mentioning that without really communicating with me about it I was no longer under the care of my original cardiologist Dr Elmariah. The angiogram was performed by a team led by Dr. Yerem Yeghiazarians, who everyone called Dr Y-Y. I still  received fantastic care and the procedure went off very smoothly. I was a tad nervous about the angiogram but I really barely noticed it.

So now it’s early July, the World Cup is heating up, I’m basically spending the rest of my time trying to figure out what to do and who to talk to. As you might expect this is where the full intricacies and complications of the American healthcare system come into view. 

I didn’t actually think UCSF could do much more to inform me as they basically wanted me to have the mini-sternotomy, but I did want to talk to Dr Yeung at Stanford who had seen my original Echo the previous year. He is a very highly regarded interventional cardiologist. Perhaps he will be prepared to do a TAVR on me?

In addition I wanted to talk to the people at Cleveland clinic and find out who was doing this neck entry robotic technique with the one week recovery. And also what about the rib entry technique that was done with the robot?

Finally I knew about that clinical trial for bicuspid patients undergoing TAVR at Cedars Sinai in Los Angeles.

(Part 4 is here)

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 here

So on the Friday afternoon I was readying for my video call when there was a car parking emergency. I had to move two Sprinter vans and a car belonging to guests who were all out apres skiing out of our driveway so my wife could get her car out of the garage to get to an appointment she had. Although I was as quick as I could, I was about 10 minutes late for Dr Beygui but he very nicely called me up wondering if I was still okay to do it, was very cordial even though I made him wait, and we had a nice chat. He basically didn’t give me any new information in this conversation and yes UCSF did get paid for it! He was mostly assuming that I couldn’t walk a couple of blocks without getting short of breath but at the end of it we agreed that because I was in good physical shape and able to go snowboarding all day I would go ahead with a knee surgery later in the summer and only come back to him when I became symptomatic. 

Starting in March I got the requisite knee imaging (I had an MRI and 2 X-rays confirming my meniscus is gone and knee was pretty trashed), met with Dr Bini and the ortho team and started prepping for the surgery later that summer–which basically meant going to the gym and doing lots of weights and resistance training on my knees.

A little later I got an unexpected call from Dr Beygui’s physician assistant who told me that he was still trying to line me up for the open heart surgery. I told him I was still keener on a TAVR. He said that I shouldn’t have a TAVR because the TAVR valves only last 5 to 7 years. Yeung from Stanford’s original report told me they lasted about 10 to 12 years. Elmariah the UCSF cardiologist said that they thought they lasted 10 plus years but there was no good data. Given you can probably have one TAVR and then have another put inside when the first one fails and then maybe even another (TAVR in TAVR in TAVR), these numbers actually matter! 

Here’s the crux of the TAVR issue. If you can add 10 + 10 + 10 that gives you another 30 years of life which sounds pretty good to somebody in their early 60s. But if you can’t get more than 5 to 7 years out of a TAVR and can only do one more “TAVR in TAVR”, then you’re getting 10 to 15 years before you need to have a very complicated open heart surgery because it’s now replacing two different artificial valves. In that case I might not survive and I wouldn’t even be old enough to be President!

As you can see this decision is starting to get a little bit complicated. 

But the good news was that I could stop thinking about it because my heart wasn’t getting worse and the orthopedics (and anesthesia) team at UCSF was happy to do the knee replacement. 

As we were all steaming down this path I got a call from Dr Beygui’s scheduling assistant. My initial agreement had been to have an echocardiogram 6 months after the last one which would actually have been after the knee surgery. I’m not sure how much coordination between the departments there was given what happened a bit later but Dr Beygui requested that I have an echocardiogram before any surgery. As I was going in anyway to have a CT in mid-June to prep for the knee surgery, I said fine.

In another great drama of American health care it turns out that my insurance had changed. For most of the first half of the year I purchased a Blue Shield of California HMO on the ACA exchange called Covered California. In May my wife got a job and we then moved over to being covered by her employer’s insurer (well, ASO TPA as it turns out) Cigna.

Cigna and the entire University of California Health system decided to have a dispute which threatened that Cigna would not cover UCSF starting on July 1st. I won’t go into the crazy logic of why an insurance plan that one buys on an annual basis starting in January has contracts with providers that expire in the middle of the year, but welcome to America. Because of this the orthopedic team moved my surgery date up into late June just 4 days after all the prep imaging including that echocardiogram.

Oh and a few weeks earlier I had had a very minor snowboarding fall going very slowly in soft slushy snow. I banged my shoulder but for some reason it didn’t get any better. I actually went and had some physical therapy which seemed to help, but as I was hanging out so much at UCSF, I also had an appointment with the shoulder specialists. They sent me for a pretty uncomfortable MRI and the result from that was that I had total tears in all my rotator cuff tendons. The recommendation for that is surgery that also has a long recovery, but if you ignore it for too long the muscles can atrophy. Claude was very depressed for me when it interpreted that MRI report!

A spanner in the works

Those of you familiar with sod’s law can guess what happens next. The result of the echocardiogram was that the aortic stenosis had gone from being severe to being very severe. The precise number was that my peak velocity went from 4.6 m/s in Jan to  5.1 m/s in June  just 4 and ½ months later.

I discussed this with my trusted health confidant and Claude guessed that this might be a problem and the anesthesia team might not want to have me get the knee surgery.

The next sequence of events reveals that nobody in American healthcare talks to each other.

The echocardiogram report came back Wednesday night and on Thursday morning (June 18) I got a call from Dr Beygui’s physician assistant. He wanted to line me up for an immediate angiogram to check whether my heart had any other conditions to prep for surgery. He also wanted me to talk with Dr Beygui on Monday. He’d previously tried to get me an appointment that day but it had been cancelled.

I pointed out that it may be tricky to talk on Monday because I was going to have a surgery that day with Dr Bini. He said, well I don’t know about that and I said perhaps you should communicate with the orthopedics group and he said that’s a different department and I don’t deal with them.

I sent a message using Mychart to Dr Bini’s team and his NP wrote back saying it is likely that “hearts trumps knees” but that we need to talk to anesthesia. As it happens I had had a prep call with the anesthesia team literally about 3 hours before I had the echocardiogram. They knew I had aortic stenosis and weren’t too worried but were going to get back to me after the echo result.

Now the result was back I did not hear from them. So far I have two departments or maybe three not wanting to talk to each other. I did have the phone number of the person from anesthesia who gave me that prep call, and I texted him later on Thursday afternoon asking if they recommended any changes.

It’s now the middle of the day on Friday and I haven’t heard from anybody. Then I got a text message back saying the head of anesthesia is a bit uncomfortable with me having surgery. He also said that he saw a message from Dr Gomez-Sanchez telling someone to call me on Monday. I’d never heard of Dr Gomez-Sanchez but Google informs me she is a leading vascular surgeon at UCSF. Why she got dragged into my case I still do not know!

Finally I heard from the ortho Dr Stefano Bini who had the wrong phone number for me and had been trying to get in touch. He basically told me that we should suspend the knee surgery until I fix the heart. So no knee surgery.

So now we’re in late June and I look on UCSF MyChart the next week and discover I have a heart valve surgery date for July 17th. 

At this point I realize things are getting pretty serious and that I better figure out what to actually do. 

(Part 3 here)

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 will be a multi-parter!

Introduction and a decent bit of context

Last summer after a lot of back and forth I discovered that I had aortic stenosis. (I won’t replay the whole story of how the referral to the echocardiogram didn’t happen three times and therefore I nearly didn’t have the test and therefore never found out because I already have elsewhere) 

Amazingly this has nothing to do with my bad lifestyle. It’s an inherited heart disease in which the valve that governs the flow of blood between the two main chambers of your heart is starting to fail. Often that means people get very short of breath, start to faint or have severe chest pains but in my case I had none of that. What I did have was the measurement on an echocardiogram showing that my aortic stenosis was “severe” because I have what’s called a bicuspid aortic valve. This is a genetic defect that my father landed me with–well I’m blaming my father but who exactly knows as he’s dead!  

Essentially instead of having three leaves on the valve (like a Mercedes symbol) I have two and over time they’ve been steadily picking up more calcification and opening less. That means that more and more pressure is required from the heart to squeeze blood between the two chambers which is bad for the heart and by extension bad for me. That’s pretty strong agreement amongst cardiologists that if you can get this condition fixed before you become symptomatic it’s better than waiting. If you get symptomatic, it’s urgent and your chance of a heart attack and death becomes pretty high (like 25-50% a year!)

But of course it’s not that simple – either from the standpoint of getting it fixed or from the standpoint of how to get it fixed within the American health care system in all of its beauty. And you can expect it, as it’s me, to hear a lot about customer service, insurance, online access to information and of course interoperability. There might also be some AI thrown in for good measure!

So our story starts with me getting the results of the initial echocardiogram. I of course put that report into ChatGPT and later Claude and after finding out what it meant I discovered there were basically two main treatments for aortic stenosis, either something called a TAVR (Transcatheter Aortic Valve Replacement) or open heart surgery. A TAVR is essentially similar to a stent in that the artificial valve is put in a catheter up your leg and opened up in the place of the current valve, pushing that to the side. Open heart surgery, or a SAVR (Surgical Aortic Valve Replacement) –  is what it sounds like: they open up your chest sternum and then cut into the heart, taking out the old valve and sewing in a new one. 

I saw the echo report in Mychart. And then heard nothing for weeks from anyone either at Marin Cardiology where I had the Echo or from my PCP team at One Medical. To be fair, I didn’t push for much and I had a secret backup plan involving my friends at Included Health which (among other things) has an expert second opinion service. They got me an early opinion from one of their expert cardiologists, Dr Alan Yeung at Stanford. His comprehensive report basically laid out the two alternatives and said that because I was young (yes this is the only area in which I’m considered young these days) the guidelines suggest that I should have open heart surgery. He also suggested that I stop vigorous exercise including snowboarding. Of course I ignored that advice and decided that I would get a TAVR at the end of the ski season and, because it has been bothering me for a while, a knee replacement in the summer.

I met with my PCP at One Medical and was referred to Dr Sammy Elmariah, his favorite cardiologist at UCSF. 

That referral actually went very smoothly. I was invited by phone, and then found on my UCSF MyChart that I had a bunch of appointments and imaging set up for late January. That first day I had what’s called a gated CT where they basically look at your entire body and see whether you could be eligible for a TAVR including whether your arteries are strong enough, but also they look at your heart. CHatGPT told me I was fine for the TAVR.

I then met with Dr Elmariah at UCSF Cardiology, He basically told me that he wouldn’t do a TAVR on me and that I should have surgery. (As part of the cardiology consult they also book you a consult with a cardiac surgeon, in this case Dr Ramin Beygui). Dr Elmariah’s team also suggested I get another echocardiogram and were able to get me one that day including getting prior authorization from Blue Shield of California within a couple of hours. I was actually pretty impressed. 

The January echocardiogram showed no progression from the previous August. A few days later Dr Beygui had a video call with me. He was late –and to be sure I don’t mind as I know the time of a cardiac surgeon is way  more valuable than mine but it’s ironic as to what happened next–and told me that I should have the open heart surgery via a mini Sternotomy. He was, I felt, pretty blase about the impact of this on my life and didn’t seem to care that I was looking for a TAVR. Most people in the Reddit heart valve replacement subreddit seem to think that a stenotomy puts you out of commission for between 8 and 12 weeks. Given the TAVR is more or less a one-day procedure and everyone’s fine at the end of week one I was still a bit unhappy about the fact they wanted to go with the open heart surgery approach. But as it turned out it’s much more complicated than me just being too young.

I essentially told Dr Beygui I would consider getting the open heart surgery if either it became symptomatic or if my next echo was much worse. 

About a month later another video visit was put on my calendar at MyChart at UCSF with Dr Beygui for late on a Friday afternoon. I’m not quite sure why. As it  happened I was in Tahoe that week and the Friday was a fantastic powder day during which I’d been snowboarding for about 6 hours and having an amazing time. And feeling great, other than my battered knee hurt.

The knee in question is suffering the after effects of me going one side of a tree and my snowboard going the other back in 2002. After a lot of surgery back then and holding it together I hurt it again a few years back and it is now what is known as “bone on bone”. It’s not unusable and I can still patch it up and snowboard on it, but it certainly isn’t great. I have met with Dr Stefano Bini, the king of new knees at UCSF, many times due to his working in digital health over the years. At virtually every cocktail hour he grabs my leg, plays with my knee and says “come on Matthew, you need to get this replaced”. 

Hence my original plan was to get the TAVR in the late spring and to get the knee replaced in the summer, making me ready to go for the next snowboarding season. 

Obviously the recommendation from the UCSF Cardiology team to not get a TAVR and instead have the open heart surgery with its concomitant longer recovery was not exactly meshing with my plans. 

(Here’s Part 2)

Matthew Holt is publisher of THCB

Congress will need to amend its faltering Parkinson’s disease legislation if it hopes to achieve meaningful results.

Why Change Is Necessary

For more than 50 years, the National Institutes of Health (NIH) has pursued Parkinson’s disease (PD) research with limited success. Nearly $5 billion has been spent, yet no approved treatment exists that slows, stops, or cures the disease.

This is not a new concern. By the mid‑1990s, Parkinson’s advocacy groups had grown frustrated by the absence of major therapeutic advances since L‑dopa’s approval 25 years earlier. That frustration led to three national plans launched in 2000, 2006, and 2014. None produced meaningful breakthroughs.

Congress to the Rescue?

Congress attempted to address this stagnation by passing the National Plan to End Parkinson’s Act (Public Law 118‑66), signed July 2, 2024. The Act:

• Calls for an integrated national strategy to prevent, diagnose, treat, and cure Parkinson’s
• Establishes an Advisory Council on Parkinson’s Research to deliver annual recommendations to the HHS Secretary, with the first report due within 18 months
• Requires the HHS Secretary to issue a progress assessment within 24 months

What Happened Instead

The HHS Secretary delegated implementation of the Act to NIH. As a result, the Advisory Council and HHS missed their first statutory deadlines and produced no measurable progress. NIH convened the Council’s first meeting on June 29, 2026—two years after enactment.

The meeting materials omitted information essential for forming a credible strategy, including:

• The time and cost of the current drug‑approval process
• Lessons learned from the three previous national PD plans
• The role of artificial intelligence and other emerging technologies
• Regulatory barriers
• A comparison of federal vs. non‑federal PD research funding and coordination
• Funding allocations across projects
• An assessment of where industry stands on potential cures and the remaining scientific steps
• A plan for engaging external subject‑matter experts
• Any economic analysis

Even basic administration proved difficult. NIH collected comments from 162 individuals but posted them a month late—and did not include my submission. Despite recommendations, NIH still does not use regulations.gov, which would eliminate many of these administrative failures.

More importantly, NIH shows no recognition that the regulatory system itself is broken and imposes massive societal costs. Parkinson’s disease alone generates over $80 billion annually in direct and indirect costs.

What the Advisory Council Is Likely to Recommend

Based on the 162 public comments, the Council’s top recommendation will likely be a substantial increase in PD research funding.

More funding would be logical—but only if used efficiently. Efficiency requires acknowledging that the technology, regulation, and process must change. NIH, as currently structured, cannot deliver on that acknowledgement or those changes.

A Better Approach

Congress should not wait for the fourth national plan to fail. Instead, it should establish a private investment vehicle, funded with federal research dollars and majority‑owned by the federal government. Executive leadership should be recruited from the healthcare industry and granted a 20% carried interest, aligning incentives and ensuring accountability for research outcomes.

Congress should also require the FDA to adopt a zero‑based regulatory framework for AI‑driven applications, including collapsing the multi‑trial model and incorporating real‑time data into the review process.

Conclusion

Human brain cells are complex and fragile, and central nervous system drugs have among the highest attrition rates in medicine—approved at less than half the rate of drugs in other therapeutic areas.

Layer on the length, cost, and complexity of today’s regulatory process, and the Advisory Council’s recommendations risk becoming the fourth demonstration of how not to solve the problem. Congress should anticipate this outcome and implement a system capable of delivering real progress for Parkinson’s patients.

Hope for PD patients exists—but only if Congress acts decisively and soon.

Steven Zecola is a former technology executive and government official.  He retired 24 years ago with a diagnosis of Parkinson’s disease.   He currently is an ardent patient advocate.

By DEEKSHA HEGDE

How to spot a fundamental business model shift from a mile away, long before the PR calls it a product launch or market expansion.

In April 2026, Progyny, a fertility and family building benefits administrator, announced Progyny Select, a supplemental health plan for small and mid-size employers (100-1,000 employees). “Pooled-risk” got me curious: did they cut a deal with an insurance carrier to back the product, or had they taken on insurance risk themselves?

Until now, Progyny had only served large, self-insured employers (1,000+ employees) as a third-party administrator. They negotiated rates with fertility clinics, routed employees to better providers, managed the claims paperwork, and took a margin while employers paid the medical bills. This product launch appeared to be a downmarket expansion to capture a segment previously untapped, but the mechanics were not apparent.

I didn’t have to look very far. It was right there in the legal disclaimer at the bottom of the press release: “through subsidiaries of Progyny Inc. with state licensure to offer supplemental coverage.” Now this really got my attention. This is a digital health company turning into an insurer. You don’t see that happen every day. I decided to do some digging.

What states have they acquired licenses in, given you need one in every state you want to operate in? Their latest 10-K, surprisingly, didn’t mention anything about their flip to the insurer model. I realized they were not required to disclose the new insurance subsidiary since it hadn’t crossed revenue thresholds by the SEC’s definition. The fully insured expansion appeared as a growth target and a regulatory risk factor. They declared the move would subject them to additional laws applicable to health insurance that do not currently apply to them.

The product landing page did mention Progyny Health Insurance Company of Washington. So I pulled the thread. Washington state incorporation records showed the name had been reserved in August 2024. Six months later, in February 2025, the entity was formally incorporated. By July 2025, Progyny Health Insurance Company of Washington had been admitted as an active health insurer by the Washington Office of Insurance Commissioner. In the second half of 2025, they filed their first few products with the regulator, all still sitting in review on the SERFF database as of July 2026. The filings also make nationwide coverage ambition explicit. So this has been stewing since August 2024, the date the name was chosen. I went on LinkedIn to check if they had any actuaries on the team. They hired an actuary in April 2023, and a second in January 2026 (who specializes in pricing insurance products) three months before the launch. 

The announcement that the press called a product launch had been a strategic transformation at least three years in the making. The SEC filings hinted at it. These four signals — an actuary hire, a name reservation, an insurance license, and active product filings with a state regulator — were sitting in plain sight the whole time. For anyone watching, just one of those foreshadowed what was coming.

I’ve been watching the market reaction since the launch. The move is still being read as market expansion downward, when it’s really business model innovation.

Why become an insurer at all?

For small fully insured employers, the health plan itself bears the claims risk, and no carrier wants to absorb a $15,000 IVF cycle in a pool of 100 people, so incumbents leave fertility out of the base plan. Self-insured employers are a finite market Progyny has been working for a decade. To reach the fully insured employer market, someone had to hold the risk. In my previous pieces on Function and Hinge, I argued that the companies that scale to win insurers over are the ones generating enough outcomes data to earn actuarial credibility. Progyny took that one step further. Instead of using their data to convince an insurer, they became one. And it makes total sense. They hold 10 years of proprietary fertility claims data. They know what claims cost, across which demographics, with what variance. Becoming the risk-bearing entity who can price it accurately opens them up to underwriter margins while they’ve been operating with TPA margins all this while.

Holding proprietary data that gets better with time is only one part of why they could afford to venture into underwriting. Here’s everything else that was true simultaneously:

• Coverage is for a discrete, priceable event. One IVF cycle costs between $12,000 and $20,000. Actuaries can model this.
• Small employer health plans typically don’t cover fertility, so there’s a gap to fill. This avoids the complexity of going up against an incumbent insurer.
• They’ve published independently validated outcomes: Milliman-audited live birth rates, cost per live birth, superior to national benchmarks. They can underwrite confidently.
• They control the drug costs with Progyny Rx, the in-house PBM. They can negotiate drug pricing at scale and steer members toward cost-effective protocols.
• The credibility with employers has already been built. They named it Progyny Select and not a new brand. Select sells through brokers, which is a new channel for Progyny, but with the brand and outcomes track record of a decade.
• They are a profitable public company that can afford the capital reserves that need to be locked up to satisfy the regulatory requirement. In WA, that is $4 million minimum.

There are several ways to price optimally, but given the PR said “pooled risk” and that they only have two actuaries, I figured the PEPM would not be bespoke. Small fully-insured employers are eating 10–13% premium increases on base medical YoY. I was curious whether Progyny can price low enough for a founder or Head of People to be convinced when a broker pitches “This is $xx PEPM you can advertise as a differentiated benefit, and it costs less than losing one employee to a competitor with fertility coverage.” 

Declared in the regulatory filings are their plans for a single pool with a 2-tier PEPM based on whether the coverage is for just employee (and employee + children since it doesn’t matter) priced at $11.15, or employee + spouse (again, with or without children doesn’t matter) priced at $30.17. This proposal, which projected the loss ratio to be 77% (aka 23% goes to admin, taxes, profit), was “referred” for additional scrutiny. Shortly after, Progyny revised the loss ratio to be 102% and declared they expect this product to be a loss-leader that will eventually turn a profit. In the meantime, the public parent will bankroll the insurance subsidiary. The PEPM tiers did not change, but the whole filing is still under review.

But wait. Progyny isn’t just a fertility company anymore. Over the past three years they, like several others who used fertility as a wedge, have built out a full women’s health platform with pregnancy, postpartum, menopause, and parenting. Select includes all of it. Take menopause as an example, which is not a discrete event. It’s chronic, ongoing, highly variable care, and Progyny has at most three years of data on it. So how exactly are they underwriting this bundle? I went back to the launch messaging and features list. Fertility: “comprehensive coverage, including IVF, IUI, and genetic testing.” Pregnancy, postpartum, parenting, menopause: “coaching,” which is simply care navigation and coordination. These are all valuable to members and attractive to employers, but the insurance risk is scoped to fertility.

That’s key because there’s a cautionary tale from not too long ago. Babylon Health, an AI-based PCP triage company, tried to become a risk-bearing provider by acquiring ~50,000 capitated Medicare/Medicaid lives. They announced it loudly in 2021 as part of a $4.2B SPAC narrative: “the largest digital-first value-based care provider in the US.” They bolted a risk-bearing structure covering the most expensive population in American healthcare onto a tech company without clinical infrastructure and cost management capability. Two years later, they filed for Chapter 7 bankruptcy.

Back to Progyny. Alongside the fertility product, WA records show a second product filing around the same time that hasn’t made it into any press release or media coverage. A supplemental termination of pregnancy insurance intended to fill gaps for employers whose base carrier declines coverage due to religious objection. Whether this product has since been shelved, made available through the broker channel without public fanfare, or staged for a later announcement, I don’t know. What I do know is that they declared to offer this at near break-even (tier 1 at $0.12 and tier 2 at $0.32 PEPM), with a 96% loss ratio (remaining 4% revenue covers admin, taxes, profit). It appears to be a low-cost, strategic door-opener to the fully-insured market that sets up the relationship for their core fertility product.

Who else can pull off the underwriter model in the near future? Carrot, Progyny’s direct competitor that launched when Progyny was signing its first handful of employer clients, could be a fast follower. I didn’t find any full-time actuaries on their team, though. Maven Clinic started in the adjacent maternity space and added on fertility benefit management in 2024 as the whole market was pushing to own the full spectrum of women’s health. Maven and Progyny collided as they expanded outward, with both now competing head-to-head for self-funded employer budgets. Maven’s dataset is newer and thinner with likely several years before a Select-esque venture.

The data advantage that Maven does have is in what was their beachhead: maternity. High-risk pregnancies, when they end in preterm births and NICU stays, can cost from $75,000 to over a million in extreme cases. Even with stop-loss insurance, self-funded employers can blow through their budget in a bad year. Applying the framework from above, pregnancy complications constitute a discrete, high-cost tail event that base plans leave employers exposed to, in a small percentage of the population, for which Maven has years of data to price. Maven has a lane, but it’s harder than Progyny’s because the cost spread is wider. Put another way, Progyny is taking utilization risk on discrete, priceable events. Maven would be taking tail risk on rare, catastrophic events.

Maven’s core product can address this, though. Their maternity coaching would identify high-risk pregnancies early and route members to better care. This would serve as the cost management layer of the insurance product, while unlocking insurance margins (if done right) and market expansion. To tie the two products together, Maven could make coverage conditional on a minimum level of patient engagement with their clinical program.

If this hypothetical supplemental insurance is elective the way hospital indemnity is, families who are trying to conceive or already pregnant, especially those with known risk factors, self-select in and collapse the pool. For a pooled supplemental plan to work, enrollment needs to be employer-sponsored and universal, which is almost certainly how Progyny Select is structured.

Maven hasn’t shown their hand yet. When I started writing this piece in May 2026, I did find another digital health company with three actuaries on their team. Virta Health added two actuaries in December 2025 and February 2026. Virta was unique in offering their diabetes reversal program at risk against reduced HbA1c outcomes so they probably needed their early actuary for value-based care modeling. I wondered if Virta actuaries were simply scaling value-based care as the company was growing? 

Coverage for metabolic care is established in base plans but no entity is accountable to keep spend low in the incentives game that healthcare is. GLP-1s for weight loss are projected to be a source of uncontrolled costs for employers. In June 2026, Virta announced GLP-1 access for employers with guarantees like 0% YoY utilization increase and 1:1 claims-based ROI. Is Virta stopping here, or is this the intermediate step to full capitation?

Either way, the signals precede the press releases, if you know where to watch.

Disclaimer: This is not investment advice. I hold no position in any company mentioned.

Deeksha Hegde is a bioengineer who writes about healthtech and digital health on her Substack, connecting dots beyond the press releases.