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✨ Power to the patients 🫥
Power to the people ✨
My Lyme remarks w/ @HHSGov @SecKennedy @Dr_Haridopolos: LymeX @Lyme_X Tipping Point — open science, open data, radical transparency. You demanded it.
Sunlight ☀️ + science 👩🏻🔬are the way forward 💚 #LymeX
Drop a 💚 for change!
🎯 Odds are stacked against all of us outside the 1%. Sick care pays when profits > people.
So I went down the rabbit hole of trying to determine what are the economics for someone, who is currently healthy , to go to a HDHP with a 10k plus deductible.
The question I asked is “I dont trust insurance companies. What happens if I have a million dollar emergency and they won’t pay “. All I can say is WTF
If they don’t pay, there are Independent Review Organizations, who are supposed to be independent, and their decision to pay or not is final. I asked for examples of companies. One was ExamWorks. That rang a bell.
These motherfuckers are the same company that issued a ridiculous denial for a patient I was trying to help. So I knew the Too Big To Care, vertically integrated insurance companies hired them to do DENIALS !!! WTF.
The biggest customers of the companies that are the final decision makers for insurance carrier denials, are the biggest insurance companies.
That is beyond fucked up. It’s the definition of conflict of interest. How do state insurance commissioners allow this ?
The high deductible plans that many people say is the solution to fixing how we do insurance, may be effectively compromised
If you are looking at a HDHP, BE CAREFUL
It might just be rigged against you
Hear, hear 💯
I’m 32 and I remember teachers telling us Wikipedia was not reliable enough to use because you couldn’t really verify who had written it, I remember my mom telling me to never ever put my credit card number online because obviously someone was going to steal it, and in Paris for a while even tapping your card to pay felt like some insecure weird thing, and then paying with your phone felt even crazier.
I also remember at school, and even later in college, there were assignments where using a computer and Word was somehow seen as cheating or lazy and you were supposed to write everything by hand.
All of these things took years to become normal, and there were always people resisting them, sometimes because they were scared of something new, and sometimes for actually pretty good reasons because the technology genuinely wasn’t that reliable yet.
I think that’s basically where we are with AI today. The person saying “there is no way I’m connecting my email to a chatbot,” or “I’m never sending an email written by AI,” or “why would I let an agent book a flight, check me in, reserve a restaurant or do random grunt work for me” sounds completely reasonable right now.
But I suspect in 10 years it will sound a lot like saying you would never put your credit card number on the internet.
These transitions always feel weird while you’re living through them. Then one day they’re just normal.
Covert extraction:
Profits > people.
We need biz models that work for every tier.
People > profits
My sister's local family-owned daycare center got acquired by a private equity group six months ago.
Same building. Same teachers. Same 7 AM opening time. Zero upgrades to the playground or facilities.
This morning, they sent out their new tuition schedule for the upcoming quarter.
Monthly cost per child jumped from $1,250 to $2,400.
When parents asked the new management why prices nearly doubled overnight, the director gave a polished corporate response about "market-rate alignment."
Wall Street figured out a cheat code.
They are quietly gobbling up non-discretionary life infrastructure, daycares, veterinary clinics, emergency medicine, and senior care….. because they know you can't just "cut back" on your kids or elderly parents.
Young families aren't being priced out by inflation. They are being squeezed by leveraged buyouts on basic human survival.
I have an idea… 🦦🫶✨
In 1991, researchers from Monterey Bay Aquarium were watching a wild sea otter mother who had lost her pup and was still swimming around the area calling for him, which was already heartbreaking enough, but at almost exactly the same time the aquarium happened to have an orphaned male pup named Elwood who was also spending a significant portion of his day calling for a mother he didn’t have.
So at some point the researchers found themselves in the extremely specific situation of having one sea otter desperately looking for a baby and one baby desperately looking for a sea otter mom, and apparently someone said the scientific equivalent of “okay, this might be stupid, but hear me out.” They brought Elwood out to the bay, found the female still there, put him into the water and waited to see what would happen.
She swam over, inspected this random baby the humans had just delivered to her… and adopted him...
The next morning they were still together, and researchers continued seeing them together for months. And because apparently “what if we give the sad baby to the sad mom?” can occasionally be a legitimate contribution to conservation science, this accidental little family helped inspire Monterey Bay Aquarium’s later surrogate-mother program for orphaned sea otters.
I love wildlife rehabilitation because sometimes it involves years of research, specialized veterinary medicine and extremely complicated protocols, and sometimes somebody just looks at two animals and goes, “I have an idea.”
🎯 chronic disease management programs = “packaging regression to the mean and selling it at a profit"
Sick people are not a business model. Care that only pays when someone stays unwell is a design flaw, not a market.
There is still plenty of money in models that get paid when people actually get better. Abundance does not require someone else’s illness.
#WeThePeople #Abundance
Replying to @PeterDiamandis
As someone who's worked inside that system for a couple of decades, it's unfortunately not that simple. Chart review studies have demonstrated that the highest-cost patients in a given year aren't the same highest-cost patients in other years. The problem is less "preventable chronic illness" (or even "waste") and more "you had a lot of terrible and unpredictable things happen to you this year." Maybe with enough data and more intelligent AI the predictability side of that can become more tractable, but the costs ... not so much.
A colleague of mine (a well-regarded statistician) refers to chronic disease management programs as *packaging regression to the mean and selling it at a profit".
Most people know Lyme.
Fewer know a tick bite can make you allergic to red meat for life. #AlphaGal
Same tick. Same backyard. Thank you for funding the work to stop ticks before they bite. Grateful for the Lyme leadership by @SecKennedy @Dr_Haridopolos @NIHDirector_Jay @Lyme_X
HHS is targeting Lyme disease, alpha-gal syndrome, and other tickborne illnesses. @CDCgov and @NIH awarded nearly $3 million to test new approaches that target ticks where they feed and reproduce.
The goal: fewer ticks, fewer bites and fewer tickborne diseases.
READ 👇
hhs.gov/press-room/hhs-funds…
HHS is targeting Lyme disease, alpha-gal syndrome, and other tickborne illnesses. @CDCgov and @NIH awarded nearly $3 million to test new approaches that target ticks where they feed and reproduce.
The goal: fewer ticks, fewer bites and fewer tickborne diseases.
READ 👇
hhs.gov/press-room/hhs-funds…
Patients are done waiting @Lyme_X
Clinical trials still move like it’s 1995.
A decade of waiting, $1–2 billion spent, and a 90%+ failure rate on a clunky, fragmented system.
ARPA-H’s SURPASS program is rethinking the entire clinical trial model.
Adaptive platforms, predictive models, real-time analysis, and AI will make trials faster and cheaper so treatments reach patients years earlier.
Ready to stop waiting? Learn more about SURPASS ➡️arpa-h.gov/explore-funding/p…
Fab work PM Erika Kim + team!
Childhood cancers require solutions designed for young patients.
ARPA-H’s $50M PCX program is connecting 200+ pediatric hospitals and care centers to accelerate research and improve care, starting with brain cancer.
We recently brought families, advocates, researchers, and care leaders together to help shape the work.
Thank you to everyone who joined us.
💚✨💚✨💚✨💚✨💚
🚨 BREAKING NEWS FOR THE LYME COMMUNITY 🚨
This is a moment we have been working toward for years.
A new Presidential Executive Order has been signed to accelerate the fight against ticks and the diseases they transmit—including Lyme disease, Babesiosis, Rocky Mountain spotted fever and Alpha-Gal Syndrome.
For LivLyme, this work didn’t start today.
💚 We have been part of this national effort since the original TICK Act was signed into law in 2019—advocating for patients, working alongside federal leaders, supporting innovation and helping bring the voices of families affected by tick-borne disease to the table.
Since then, we have continued that work through HHS, LymeX, TOPx, the Tick Borne Disease Working Group, Lyme Disease Round Tables pushing for better prevention, better diagnostics, better data and ultimately better answers for patients.
Today, we are incredibly grateful to see tick-borne disease receiving this level of national attention.
There is still so much work ahead—but this is meaningful progress.
Thank you to HHS and everyone who has continued to listen, collaborate and push Lyme disease innovation forward.
For every patient and every family still searching for answers—we keep going. 💚
#BreakingNews #LymeDisease #LivLyme #TickBorneDisease #LymeX #TOPx #TickTracker #LymeAwareness #Innovation #PatientAdvocacy
Innovation comes from unexpected places ✨
YC and dropout culture have convinced us the ideal founder is 22, straight out of school, but the data tells a different story.
Some interesting data:
- An MIT study of 2.7 million US founders found that the average founder was 47 when starting a company that later exited through an acquisition or IPO.
- The same study cited that the founders of the fastest-growing 0.1% of U.S. startups were 45 years old on average when they started their companies.
- A 50-year-old founder was approximately twice as likely as a 30-year-old founder to produce an acquisition or IPO.
- Founders with at least three years of relevant industry experience were twice as likely to build a top-0.1%-growth company as founders with none.
So it seems that experience is one of the strongest advantages a founder can have.
Two lessons here:
1. It's never too late to start
2. It might actually be TOO early to start; getting work experience is worth considering
Huge thanks to ALL helpers of #Lyme #IACCI #AGS #tickborne #InvisibleIllness
All for One, and One for All!
Lyme Moonshot❣️🇺🇸🚀💫
Decrease tick population by 50% by 2028
Full Executive Order 9/29/26 whitehouse.gov/presidential-…
TY to all advocates who have made your voices heard! This historic executive order is designed to mobilize the federal government for Lyme and tick-borne disease patients. Another good step! Read more bit.ly/4hxQC4V
Protect our Warfighters! The DOW FY27 Deployed Warfighter Protection (DWFP) Program is open for pre-application submissions for advanced tech to combat disease vectors like mosquitoes & ticks. Pre-App Deadline: Nov 20, 2026. Details: eBRAP.org/ #DWFP
+1 concur. Dumb decision making us dumber ¯\_(ツ)_/¯
Let’s clean indoor air, like we clean indoor water for all of our health & wellness 🤍
Thank you @POTUS and @HHSGov for breaking a broken status quo w/ complex chronic disease — Lyme, alpha-gal, tickborne, invisible illnesses 🫥
Data > dogma!
Invisible illness, finally visible.
Lyme Moonshot❣️🇺🇸🚀💫
Grateful for @realDonaldTrump @Scavino47 @SecKennedy @cohengive @Lyme_X @mkratsios47 @Dr_Haridopolos @reaganthemovie @itsmarlamaples & many others who helped, esp the American public + bipartisan, bicameral support that made a difference! 🙏🏻 whitehouse.gov/presidential-…