It has been such an incredibly inspiring morning here in Seattle, and we wanted to share a few big take-aways we’ve seen so far. But, first, we want to applaud all of the individuals online, on our stage, and in the audience today that have shared their #WTFix and #WhatTheHealthCare stories.
Young People & The Fight to Fix Health Care
This morning we learned the power that two young patient advocates and chronic illness warriors, Jameson Rich and Morgan Gleason, have. Their inspiring and simple demands to change health care: Just put the patient first.
To change health care, says Morgan:
“improve communication between patients and doctors, and put patients at the center, in control of their care.”
It’s critical to have young people as part of the discussion – because they are a part of this messed up system, too. Young people are SO important to help break down needless complexity in health care. To quote Jameson, many chronic illness patients live in the health care system:
“I spent hundreds of nights in patient rooms. I’d tell the doctors or nurses: “I live here” – and they’d laugh at me.”
Moreover, the measurement of how well patients feel shouldn’t be centered just on test results. This is so critical for health care providers to understand. Each patient is unique, with unique goals for care. Measuring a patient’s treatment success should be centered around their needs & wants for their life
“We should start judging patient success on personal experience. If I can still ride my horse, I don’t care about an off lab result,” said Morgan.
What are YOU waiting for?
This morning we also heard from Dana Lewis, a pioneer in the #WeAreNotWaiting and #OpenAPS movements.
“People always ask me if I’m an engineer – no I’m not, I’m just a girl telling you that I’m tired of living with diabetes,” Dana said. Dana wasn’t content to wait for the FDA or medical device manufacturers to make her life easier. She got online, asked questions, and found others she could work with, ultimately creating her own artificial pancreas.
It didn’t cure her diabetes, but it does make her quality of life better.
“Changing something is better than changing nothing,” Dana says. Best of all, she didn’t keep it to herself, but made her artificial pancreas open source. To date, there are now 310 people worldwide using a self-built artificial pancreas through #OpenAPS.
On Grit (Not taking NO for an answer)
Grit was a theme throughout the day, starting with Susannah Meadows’ kickoff.
Susannah shared that you have to push through the wall in the marathon of health care – for parents, for patients, and for anyone intimately involved in the health care experience. And you have to find a voice to fight for yourself, your family, and for others. Her statement captured this idea perfectly:
“A great trait is when you’re inspired by the word no.”
Her motivation to get out there and advocate for patients says it all,
“I wasn’t comfortable telling my own story. But if there was a single family that could benefit from it, I had to do it.”
Fred Vogelstein showed how long, hard fights can lead to success, for his family and others. “What’s amazing about our story is that our son became patient #1 for a drug that’s now in phase three of a clinical trial.”
That drug, an experimental epilepsy drug synthesized from cannabis called Epidiolex, would save his son’s life, and could soon save many others. Fred’s advice for patients and families facing a diagnosis:
- Be well informed.
- Get the agenda for the annual conference for your disease, and go if you can.
- Search PubMed, reach out to the organization for your disease.
- “Immerse yourself in the scientific research for the disease. Marinate in the terminology.”
The big takeaway from every session this morning was perhaps best summed up by Susannah when she said that it’s important for patients to learn and internalize that, “Hey, I may know more about something than this great doctor.”\
Watch the recorded videos right here!
And, stay tuned for our recap of the #WTFix afternoon sessions.