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 4Part 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 On the other hand, Dr Makkar told me that his unpublished data between TAVR and SAVR at 5 years showed no difference.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.
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!
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.
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.
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.
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!
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.
Back in the late 90s to early 2000s, I had a robust (independent) internal medicine practice. These were the days before electronic medical records and hospitalists became ingrained into the healthcare delivery landscape. I’ll admit that—despite how much I loved my Palm Pilot—initially, I was ambivalent about the value-add of both. For many reasons, I felt that using an electronic health record (EHR) would serve as an improvement over paper records, but at what cost and effort? (Too many EHR users had already told me that, once you’ve used [a good] one, you’ll never go back. I did , however, promise myself that I would find a way to look at the patient sitting before me instead of staring at the screen.)
I was, however, skeptical about how an external physician, who, while clinically adept, didn’t know “the rest of the story” about my patients multi-dimensional stuff—life experiences, body language clues, hobbies, tendencies, cultural norms, etc.—could serve them better than me during their times of a health crisis. But I did know that the train had already left the station.
Like a great white shark fin, the concept of “Managed Care” and all of its attendant pros, cons, trials, and tribulations, had already broken through the surface of healthcare delivery and workflows, only to be forced into to a hasty retreat due to a tremendous backlash from enraged patients and physicians. (I mention this in a previous post: A Code Blue for Common Sense.)
Concurrently, I was leading a large independent physician network that was taking on risk-based contracts. To say that my synapses were firing in the high-speed lane would be an understatement.
Our network attorney was an interesting person and eventually, we became good friends. (In some ways he reminded me of a cross between Richard Belzer, Peter Capaldi, and Sam Elliot.) He was thoughtful, smart, articulate, and, when he spoke, people listened. And he didn’t suffer fools.
He invited me and my wife, Kathy, to dinner one night to he and his wife’s home in So. Dartmouth, MA. His elderly father, a retired physician, lived with them. When we arrived, Mark introduced me to his father, who was seated at a table. Although he appeared somewhat frail, he was well groomed and neatly dressed. When we shook hands, I noticed that he had a strong grip. He remarked about the firmness of my grip —as if it was a characteristic that he judged people by. I couldn’t help but notice that. on the tabletop in front of him, was the most recent issues of the NEJM and JAMA. They weren’t there for show: when asked about it, he said he read every issue, so he could “keep up with medicine”. (His son confirmed that he did indeed read every issue and could speak to them with accuracy later on.) He proceeded to ask me what I thought about a particular article about a COPD study that was in the NEJM issue. Thankfully, I had read it. I was impressed and thought: that’s a state of being that I’d like to find myself in during my septuagenarian or octogenarian years. Keeping up.
None of my adult children ended up in the medical field —a neutral reality, not a judgement or regret. Still, recovering from my recent hospital stay gave me time to reflect on how they navigate today’s sea of healthcare misinformation. I’ve been considering what I ought to do, if anything, to curate the information about medical advances that will (and might) actually matter to them: strategies for getting upstream of chronic illness, novel, diagnostic tools, new discoveries, and the real world impact of artificial intelligence in healthcare.
For the most part, physicians are data and information hungry people. We want to see the evidence.
A patient comes in for an ordinary primary care appointment. The nurse runs through the usual checklist: temperature, blood pressure, pulse, weight, sometimes pulse oximetry. Sleep probably won’t come up. If it does, it will be a side note, and if the patient says, “not great,” what often follows is a brief look of sympathy and the familiar advice to relax a bit before bed.
That is, more or less, what sleep looks like in the most common diagnostic interaction in American medicine. Don’t worry, it is not much, if any better in any other country. The other vitals get numbers, while sleep gets small talk. Calling this a minor gap misses the point.
What the Evidence Says
Sleep sits among the strongest behavioral and physiological predictors we have for chronic illness, cognitive decline, mental health outcomes, and burnout.
Work out of Stanford recently showed that just one night of sleep data (admittedly from a hospital sleep lab), processed by a foundation model called SleepFM, could flag elevated risk across 130 disease categories with high accuracy. The outcomes on that list are not trivial and include all-cause mortality, dementia, myocardial infarction, and heart failure.
A 2025 umbrella review that pooled 29 systematic reviews found two-way, physiologically mediated links between sleep and depression, anxiety, plus a long catalog of cardiometabolic conditions.
And researchers at Washington State University published what is, so far, the longest objective description of sleep in chronic insomnia. Eight weeks of continuous, in-home measurement pointed to something clinicians have struggled to capture for years: night-to-night swings in sleep efficiency, sleep latency, and intermittent wakefulness are central to the condition. Sleep diaries and one-night lab studies kept missing that pattern.
The clinical rationale for measuring sleep is settled, but what remains unclear is whether medicine intends to behave as if it believes its own evidence.
In a 1996 JAMA editorial Nobel Laureate Joshua Lederberg MD wrote “Our fight with microbes is far from over …odds are tipped in their favor…they outnumber us a billion fold, and mutate a billion times more quickly…pitted against microbial genes, we humans mainly have our wits.”
Now three decades later, our scientists remain in a “battle of wits” with this amazing viral foe, but even without a vaccine, have maintained a slide edge for humanity. Experts recently confirmed that we are unlikely to have a vaccine bullet by 2030. And it’s not because we haven’t tried. There have been more than 250 official HIV vaccine trials, with fewer than 10 making it past the safety threshold to test efficacy – and the best performer only had a moderate success rate in triggering some immunity in 31%.
HIV is just a bad actor according to Professor Anna Durbin at the Bloomberg School of Public Health at Johns Hopkins. To start with, it embeds its chemistry in the host’s DNA genome, blurring the boundaries between “self” and “non-self.” Most of our successful vaccines focus in on a protein portion of the virus envelop or capsule. But the HIV virus has a “glycan shield” – a protein envelope that incorporates around 95 different sugar molecules which shield or disguise the viral protein from detection by our immune system. As one expert described it, “The immune system’s antibodies approach the virus and effectively see a blurry cloud of sugars rather than the vulnerable protein underneath.”
The second problem is the virus’s “sloppy gene duplication” is riddles with mutations. This yields dozens of different versions each with endless subtype variations. This is not typical disciplined viral behavior. Today’s measles viral genome for example is nearly identical to its late 20th century version.
And finally, HIV’s favorite target for invasion is the CD4 lymphocyte, otherwise known as the “Helper T-cell.” That happens to be the cellular key that unlocks our entire immune apparatus. This virus effectively decapitates the lead generals of our defensive force. And yet, we’re gaining on the virus. How have we done it?
First, by focusing on two “work-arounds” that trigger “passive immunity” without the help of our own immune machinery. Three decades ago, breakthrough discoveries first offered a glimmer of hope in the form of antiretroviral medications. With a variety of different combined therapy approaches, HIV/AIDS emerged as “no longer a death sentence,” but a chronic disease, like diabetes, that could be managed. In the modern era, this effective approach has spawned PrEP, or “Pre-exposure Prophylaxis,” – a preventive regimen for HIV negative individuals who are at risk of contracting HIV.
