Our healthcare system is deeply flawed, and corrupted with bad incentives. It's more profitable to treat a heart attack than prevent it, and it's more profitable to push a new wonder drug to market than investigate a promising off-label use of a generic, or a supplement or diet change. The amount of money spent is mindboggling, 18% of US GDP, or over $4 trillion dollars.
And for what? To have our serious health concerns dismissed by doctors who can only spare 5 minutes to glance at our charts, and get hit with a big bill as a thank you. We edit immune systems to cure cancer, yet tens of millions suffering with Long Covid are left with no options. It takes 10 years to get a new drug to market, and in the meantime patients are told to "sit tight" and suffer, or die, while this insane bureaucracy takes its time to figure things out.
We have to do something about it, but the question is, what? Figuring out a better way to discover new treatments and cures would be a great place to begin. We can start with some simple principles:
1. Power to the patients.
Today, research is done in an ivory tower, and academics, industry labs, and government agencies know what's best. This is a mistake. Patients have so much to give, from identifying promising new treatments to guiding study design and participating in research. Giving them a seat at the table will result in better research outcomes, faster, and at a lower cost. Patient recruitment is actually a massive driver of clinical trial costs and delays, yet patients really do want to participate and help. Perhaps, if we did trials on the treatments patients already knew had promise (and less on those they know are harmful or don't work), made trials more inclusive, and made the process a simple, even delightful experience, this wouldn't be such an issue.
2. Make it cheaper.
Drugs are so expensive because it costs over $1B to do the research and validation to get them to market. This is also why western medicine ignores entire categories of treatments as "not evidence-based" - who's going to pay $1B to show that fasting, or cold exposure, or a supplement like nattokinase are safe and effective? If we can produce good evidence that something works more cheaply, it will not only make new drugs cheaper, but it'll open up a whole world of new evidence-based treatments that previously weren't feasible to validate.
3. Make it faster.
It didn't always take 10 years to get a new drug to market. Once something was shown to be safe, it was a choice by doctors and their patients whether, given the evidence and their own risk tolerance, it was worth trying. Now, rather than giving patients access to drugs that are 95% likely to be safe and 70% likely to work, they're told to stand by and suffer, decline, and potentially die waiting for regulators to reach 99% confidence that it's safe and it works. Patients should have more agency, and "do no harm" should include the harm of doing nothing.
4. Make it smarter.
Randomized controlled trials are the gold standard of evidence, but they also have major issues. They can only make inferences across the population that was included in the study, which is bad because it doesn't reflect the true population (it's mostly white men in urban areas in clinical trials), and it doesn't reflect the experience of any individual within the trial (just because it works on average doesn't mean it'll work on you). We're all unique, and especially for heterogeneous diseases like Long Covid, treatment shouldn't be one-size-fits-all. We need more data, better infrastructure, and new approaches to start to figure out what will work best for you.
So, we're building a better way. Millions of people try something new every day, yet we learn very little. We're creating the connective tissues, a global community that learns what works at the speed of the internet. It'll be the best place to learn about treatments that are working for people like you. We have a few simple, but hard goals to shoot for:
1. Empower patients to share high quality (observational) data on the hundreds of treatments that are being tried for Long Covid, and make the information available and easy to consume.
2. Use this as a launchpad to discover treatments that are worth trialling, and support/accelerate those trials to get new treatments to market sooner.
3. Repeat the above for all chronic disease.
We think that patients are already hungry to contribute, but they need better infrastructure and tools to help those contributions move the needle. If this excites you, we'd love to have you along for the journey. Just click here to join our private beta.
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