Paying for friends, Gaming Insurance Via Marriage, and hacking CPAP machines

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More weird, fringe behaviors in healthcare

Last time I talked about fringe healthcare behaviors I was seeing: people posting labs on social media, doctor apps, and hardware to induce mental states.

I asked you all to send me some and you didn’t disappoint. I discovered many of you are in even weirder parts of the internet than I am. And many of those people need to find Jesus.

Below are a few of my favorite examples people sent in. Memes and commentary added by me.

But first…

Quick Reminder: Healthcare Datacamp submissions due soon!!!

Next week applications close for our healthcare data conference. You can apply here. It’s in Boston 9/19.

We're looking for people with at least 2+ years of experience with healthcare data that are actively in the weeds of dealing with it. There are no panels, only breakouts and workshops to actually get answers.

While we haven't hammered down the exact topics yet, here are some themes we're exploring. We're open to other ideas or people that want to ​run a breakout/workshop themselves​:

• LLMs in real life. How we’re using LLMs to make our day-to-day jobs better
• Interoperability Reality‑Check: FHIR, OMOP, TEFCA,
• Risk & Cost Modelling 2.0—From Grouper Logic to TCOC
• What data actually matters for us to capture? For Patients, for clinicians, AND for the business?
• I’m not a Dashboard ATM: Designing Actionable Insight Products
• Real‑Time Signals → Real‑World Workflow: What’s Actually Working?
• Career & Team Design in the Copilot Era
• Responsible & Ethical Data / AI Use

If this sounds like you, you should apply here. It takes two minutes.

People paying for interpersonal interactions

From Nitya Kanuri

“As you called 3 years ago, paid friends as a service is now a venture-backed business. For $40, you can “talk to someone who’s been there.” If that’s too steep, Supportiv grants a day pass to “Conversational Care” for $15, or Rent-A-Friend starts at $10/hour. This is the most capitalistic take on the original concept of the friendship bench.

While part of me wants to be righteous and judgey about the business model of monetizing friendship, connecting humans to humans is – IMHO – better than the slew of businesses pitching AI companions (Replika, Character.ai, Kindroid, Friend). A recent study from the MIT Media Lab found that chatbot use was associated with greater loneliness and reduced social interaction.

As social isolation continues (more single-person households, higher reports of loneliness), I believe we’ll see people craving interpersonal experiences. We’ll ditch live streaming for AI fans on Famefy to attend local Toastmasters Clubs. Use of BumbleBFF and Peanut will increase. And – to combat what will have been lost in the age of AI – we’ll see the next crop of startups selling “learn to make a friend” as a service.”

[NK note: As people get lonelier, I think friends-as-a-service will become more popular (friend escorts? No that’s wrong c’mon). It would be great if friendship happened more organically, but a host of societal and cultural factors have made it difficult for people to make friends. I started a whole ass company to try and solve that problem 5 years ago so I do understand it.

But I don’t think this has to be as dystopian as people think. In healthcare some of the most successful models use peers to help patients because it’s cost-effective, creates more touchpoints, and a great way to keep patients engaged. Even if not explicit, this is basically getting paid for interpersonal interactions and it can work very positively. 

I do think people using paid interactions as a crutch and not learning how to build relationships themselves is bad though. I’m worried that people using AI companions will be stunted in weird ways because they don’t have to deal with the hard parts of relationships (arguments, conflict resolution, sacrificing) which make you grow as a person.]

Employers paying to get your dependent off their plan

-Anonymous

"Among the many odd spillover effects of having your employer cover your healthcare cost is that your employer indirectly becomes very concerned about your marriage. When you look at the populations that companies cover, a sizable chunk - in some cases, nearly a majority - aren't the employees themselves but their spouses and children.

In a never-ending quest to turn back the constant tide of healthcare cost inflation, employers are figuring out one great way to save costs is making your family someone else's problem. While basically 100% of large companies offer spouses the ability to enroll, companies are increasingly fighting to get your family to take other insurance.

According to the Kaiser Family Foundation, about 10% of employers will change a fee for spouses with other coverage options (read: their own employer's plan). Around another 10% will straight up bribe the employee to take the healthcare costs elsewhere - adding benefits if they enroll in their partner's plan. They can also make spouses ineligible for HRA benefits through SIHRAs, which is a legal way to limit benefits to only those employees who don't register their partners for the plan."

[NK note: If this takes off, the entire newsletter economy will cease to exist since all of us are dependent on spouses with Big Tech benefits. 

But it is crazy how game-able insurance coverage is if you’re flexible about your marriage. People are considering divorce so a birth can be covered by Medicaid, spouses are creating companies so they can access small group plans. Would you marry a homie to give them your health insurance? That’s the true test of friendship.]

Microdosing growth hormone

From anonymous

“This popped into my head after seeing your "weightlifter buys breastmilk" meme - I was chatting to a friend recently who is in the gym a lot and he was talking about taking growth hormone to reduce body fat percentage (using growth hormone for body builders and anti ageing has been going on for decades) but what was interesting was that he has tried to assess the quality of the company he gets it from, and their supply chain. He commented that where he gets it from is good quality, but he knows people that get side effects when they dose above a certain amount from other suppliers. So I'm assuming there are a bunch of forums where people are rating compounding pharmacies (he's based in Bali so I think this is all illegal/underground) and their API suppliers.

I assume similar forums happen for GLP-1s where people say X compounder is good, but GLP-1s from Y compounder is bad.

Not sure im excited by this but I wonder will the changes in 1) acceptability of compounders 2) willingness to self experiment impact the generic/biosimilar space. Instead of it being a pharma strategy, will there be a lot of niche biosimilar manufacturers?

[NK note: The gym consists of two people. Those who think their body is a temple, and those who are cosplaying as a lab rat.

I got so many responses related to gym people in general. For example, using weird gray market peptides like GHRP-6, CJC, etc. to tan their whole bodies, recover faster, but also have insane side effects. The peptide subreddit is insane and if anyone thinks you’re a bot, they think it’s pharma trying to scare people (wut???)

 I’m sensing a general theme through these answers that people are looking for peer-to-peer rating mechanisms for “gray areas” they’re experimenting around. IMO this is basically an extension of “safe injection site” ideology. If people are doing this anyway, should we figure out at least good vendors for them? At the very least, there’s probably some weird crypto idea here to anonymously assess vendors/people and enable payment between everyone.

Separately someone actually texted me about a different growth hormone use case.

I think the general obsession with height is causing weird cultural effects. It’s okay to be a short king - you’ll end up being funny out of necessity and that skill will get you way further in life *end projection*. Not everything needs to be fixed, some things just need to be adapted to (especially when they’re developing!). 

Courses enrolling!!!

Shilllllllllling time, but it’s for your own good trust me.

• How to sell to hospitals and Pharma Deep Dive both start today!!! You can sneak in last minute if you sign up now (we might even talk about the “Most Favored Nation” stuff in the pharma course, cause we move FAST and we’re TOPICAL).

• Our LLMs in healthcare course is also enrolling and starts 6/2. You’ll learn about LLMs, practical ways to use it at work, and things to watch out for when you’re implementing them (from someone who’s been there and done that). 

• Finally, we have a free ICHRA course starting next week we’re teaching with Thatch, our sponsoring partner. Whether or not you know what ICHRA is, this will show you some of the practical parts of implementing it at an employer + regulatory trends. And it’s free.99, doesn’t get cheaper than that. Unless I paid you I guess?

Hacking CPAP Data/Machines

From anonymous

“A trend I’ve recently stumbled upon - relying on Reddit for CPAP/sleep apnea data analysis & titration. Here’s what I experienced:

- see a sleep doc for a consult (2-3 mo wait, $30 copay)

- schedule sleep study (2-3 mo wait)

- prior auth for sleep study denials & appeals (2-3 mo)

- schedule at home sleep study thru sleep doc (2-3 mo wait)

- at home study canceled day-of - the sleep tech called in sick, soonest available: 1 mo wait.

- say f*** that- buy an at home test online cash pay for $140, it arrives in 2 days, didn’t require an in-clinic visit to setup, uses the same device as the clinic would have sent you home with, and gets physician interpretation back 2 days after that - diagnosed with HELLA apnea. (AHI almost 60…)

I thought that was the hard part. I had been seen by 2 doctors, had diagnostics performed, and a diagnosis. Time to get the CPAP.  Wrong. Called 45 DME vendors from my plan’s directory. There’s actually only 11 unique companies on that list: shockingly, 10 of the listings were all DBA’s of the same company.

The only one I ever heard back from? Said my plan required a 30 day in-home trial with a rented device & remote patient monitoring for compliance checks. After the trial, I would then have the privilege of RENT TO OWN a machine through my insurance. After all said and done, would have been more than $2K out of pocket.

‍[NK note: this is the villain origin story of a new voice AI company]

This is where Reddit comes in…r/CPAP. A few nights of doom scroll & a “HELP” post and I ordered all the required equipment, cash pay, to my doorstep, for less than $800. (And to be clear: the SAME equipment. Not comparable. Same.)

Now I have this electric snorkel and a sleep doc that I saw once for a consult 18 months ago & who I don’t really trust (she saw central apneas on my at-home test results - which is impossible & not measured by the device.).

So back to Reddit we go.

CPAP machines hold SD cards and record a fuckton of data. Traditionally you’d let your doctor monitor you from the cloud, but since I’m cowboying this one - I’m going the Reddit approach.

There is open source software (Oscar, sleepHQ) that lets people download and inspect their data straight off that SD card. And the established procedure is to rack up a few nights of data & bring it to the sub for interpretation by a community of people who have been through the exact same wringer.

The level of detail & knowledge in the sub is INSANE - it’s made me question whether I should see a real sleep doc again or if I have everything I need between the forum & AI.

It also exposed more scams:

- manufacturers pushing for mask replacement every 90 days because it affects the seal —> r/CPAP members reporting using same mask for 3 years running [with data to prove that they are definitively not having sealing issues]

- EPR features included in devices on the “patient configurable” side, even though they have been proven to reduce clinical efficacy if used after titration.

- real, legitimate, doctors pushing their patients to in-home tests that require an in-person visit to setup. Not an exam, or consult, but “you must come to pick up your device from a sleep tech on the day of” — it’s a DISPOSABLE DEVICE (the watchpat) with a KILLER app & video and written instructions in every language under the sun.

- and countless stories of “yep everything looks fine to me” or “ok Dr google” situations where patients with legitimate (and evidence backed!) concerns get brushed away and have to resort to the internet.

Beyond this all being fascinating to me because I’m living it — CPAPs in particular are unique because of the data available. It’s not an annual CBC. It’s thousands of detailed, to the millisecond, datapoints - every single night.

(Also - did you know that people are jailbreaking their CPAP machines? One of the largest manufacturers ResMed has a flagship model, the ResMed 10, that contains 100% of the parts + software to also function as a BIPAP machine - BUT ITS DISABLED IN THE SOFTWARE even if you bought your device outright. Most people find out they need bipap instead after having already been on cpap for months or years. So ResMed profits by pushing you to buy ANOTHER, even more expensive, device from them. Now, there’s a hard-to-find jailbreak that can unlock that capability. Or turn your CPAP into a ventilator por los Covid-type emergencies)….

[NK note: Device hacking is really interesting - there’s a whole community that uses open-source software to make their insulin pumps automatic. 

It raises an interesting question about risk - the manufacturers push for mask replacements because if there’s a defective seal then they’re liable. I don’t think the manufacturers are being nefarious. Patients say they’re fine taking extra risk and not replacing it as often. But what if something goes wrong? Or what if someone on this forum gives advice that leads to a safety issue?

My general ethos is that patients should be allowed to take on more risk and DIY healthcare things themselves, and hardware hacking/forums are a great place to see how this plays out. ]

Thinkboi out,

Nikhil aka. “Don’t tell my wife about SIHRAs”

Twitter: ​@nikillinit​

IG: ​@outofpockethealth​

Other posts: ​outofpocket.health/posts​

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