NEXTMED.HEALTH part 1
TRIP REPORT MARCH 13-14-15-16 2023, SANDIEGO
NextMed.health is an opportunity to discuss the future of medicine. It is where innovative ideas intersect with our health today, midterm, and far out. It’s an opportunity to push oneself out of the day-to-day grind. NextMed injects a healthy dose of chaos into all our preconceived ideas about medicine and how to deliver it. It’s meant to open our eyes to new ways, new thinking, future solutions. While it’s mostly about high-tech intersecting with medicine, this year, psychedelics were also on the agenda (No sampling unfortunately, haha!).
This is my all-time favorite conference. I always come back energized and my head full of ideas. As I was reflecting on the energy present in the room, I realized how much presenters and attendees alike are aligned to support the patient to live their best life. While the alignment of supporting the patient doesn’t make the problems easier to solve, it does go a long way to make one resilient in the quest.
Put another way, a quote from Chasing my CURE (more below) – “I still believe in the power of science and medicine. And I still believe in the importance of hard work and kindness” – So I spent the last 4 days with people who live by that moto – and I enjoyed it!
Over the next few write ups here, I will be discussing my mind blown moments, stay tuned. Today I will give space to the great survivor story of David Fajgenbaum(Chasing my CURE author). Stories like his are quite spectacular. And I want to say, because of all their failings, our various health systems are minting many miracles per day and every day.
SURVIVOR STORY – David Fajgenbaum, Chasing my CURE
I strongly recommend the book, a great uplifting story. You can also get a 5min summary of his story here (YouTube). The hero journey - Dr. Fajgenbaum is the story of a young guy, undergrad, full of energy, D1 football quarterback, studying in oncology to honor his mom who died of cancer, with his partner Caitlin the love of his life. He is as happy as a clam. He is the all-American dream. Then a mysterious illness declares war on his body, it takes nearly 3 months to diagnose. It’s a rare illness, no known cure. He sees the clock of his life go down to zero time left in regulation 4 times all in all. As he is saying well, he has been playing overtime since. With no more treatment alternatives available, he sets to dedicate his life to finding a cure to his illness, and others, because his condition can return at any moment. His health situation, the fact he has no time left on the clock, forced him to look at readily available cures. Along the way he becomes a champion for a new approach to medical research. He has now been in remission for 12 years, through drug-repurposing. Thanks to a medication he identified, readily available – we get to read/hear his story.
MY TAKE AWAYS
The can-do tone struck a chord with me. Dr. Fajgenbaum’s determination is contagious, and inspiring. He didn’t give up, in the direst moments, he fought, and fought again. It helps one put his day-to-day struggles in perspective. He refused to give up, and changed the way we can find cures. An example of lots of good can come out of bad situations.
Lead users, community of patients, DIY, are a key factor for our health authorities – for capable lead users like Dr. Fajgenbaum I’d like to see their path facilitated. The authorities are, first do no harm, and prove efficacy. Yes, this leads to lots of good for us, AND awfully long approval processes. Science can be done differently, and users can be of extremely high competence in their fields, even if they don’t work for a large pharma or have the official titles. Today FDA and health authorities are geared toward large corporations. There would be benefits to gearing more towards lead users, community of users, so more cures can be found and approved.
We have seen this with diabetes lately where FDA was influenced by the diabetes community for a diabetes solution. Large corporations will optimize for large markets to make their investments worth it, community of patients will optimize for quality of life of the patients in the community regardless of market fundamentals. So, a whole lot more science can be done this way, and more cures can be found.
ADHD the good side! Dr. Fajgenbaum is an out of the closet ADHD. This obsession he demonstrated in finding his own cure is a direct benefit to him and all of patients suffering from the same condition. There is upside is everything we are. His ability to look at the tree (versus the forest), and this one tree for an awfully long period, with minutia, is super important. This relentless energy channeled into this one thing, led to great benefits.
One of my sons is diagnosed with TDAH, dyslexia and a few more dis- like things. I witness his struggles with it, and it’s tough on his self-esteem when it’s time to write/read, learn in conventional ways. I hope to find a way to communicate the enormous potential he has within, regardless of his struggles, that few people can dig deep as he can, when it matters to him.
Turning hope into action. Hope is an action driver, and Dr. Fajgenbaum puts it to us on every page. A man who refused to give up and fought. As of recently I’m part of various volunteer projects, and a big frustration I take away so far is there is such a generosity of opinions, and so few people willing to roll up their sleeves. A friend of mine used to say ‘a pair of arms is much stronger, and useful than a pair of eyes’, meaning just commenting at those working is useless. It’s more important than ever, in this age where everyone can pitch in an opinion, that we focus and work with the ‘willings’. We must trust people with hope/dreams/convictions and support them into turning their hopes into actions to change the world!
Science based, Hardworking, and kind.
Hanging out with folks driven by science (the method, the process etc), hardworking, and kind is highly energizing. Supporting patients so they live their best life given the cards they have is rewarding.
I remember for a client, a project we had been working on for a long time, with lots of hurdles, and rework. Said project finally went into beta, and our client did a presentation to our whole company. In the three-month beta, leading up to Christmas, he was telling us the solution we had built together had allowed 45 people to be celebrating Christmas that year, as if they were alive! The pride I felt that day, that through a carefully planned patient journey, lots of code, we helped all those folks and their families, only after 3months – I was on cloud 9.
See you next year NextMed.Health tribe!