Hi Sean. I just read your most recent newsletter which reminded me to go back to this one. We should have my mom give a talk when you come out to LA. I’m not sure if she’s ready to travel with the crew but if it’s a local event, she loves to talk and she’ll tell you all about her anti-galectin-3 therapy.
Regarding the legislative agenda, the 2018 Right to Try already lets insurance companies cover investigative medicine. Some insurance companies already have exceptions for investigative medicine when it is administered by a medical doctor under an institutional review board supervision.
The legislation toward early detection and screening is great if you’re early or mild. But don’t the people who already have severe and moderate dementia deserve a treatment that can make them better too?
The only way we’ll know if an Investigative New Drug in a FDA-granted Expanded Access Program can help more moderate and severe patients is if they can afford to be in the program. Even if reimbursement is possible, it could still be cost prohibitive. That’s why we need pre-approval for investigative new drugs in compassionate use cases where the patient has failed a first line medication if there is one, they can’t or won’t take an anti-amyloid drug, and there are no other clinical trials in their area or for their severity and type of dementia…they’re basically at the end of their rope - they keep getting worse.
So can the Alzheimer’s ambassadors for the US representatives please suggest better coverage for promising INDs like TB006, because those families need some hope too and I’d like to get more caregivers a result like mine with my mom’s reversal which has all but eliminated the caregiver burden outside of laundry and shopping.
Or is compassionate use expanded access only supposed to be for wealthy dementia patients?
Can't wait to read this book! Just hearing you read one chapter brought me to tears. I can't imagine how the entire book will broaden my mind, increase my sympathy, and inspire change.
Thanks Gracie. Can I use this quote in the front pages of the book, attributed to you at USI?
Hi Sean. I just read your most recent newsletter which reminded me to go back to this one. We should have my mom give a talk when you come out to LA. I’m not sure if she’s ready to travel with the crew but if it’s a local event, she loves to talk and she’ll tell you all about her anti-galectin-3 therapy.
Regarding the legislative agenda, the 2018 Right to Try already lets insurance companies cover investigative medicine. Some insurance companies already have exceptions for investigative medicine when it is administered by a medical doctor under an institutional review board supervision.
The legislation toward early detection and screening is great if you’re early or mild. But don’t the people who already have severe and moderate dementia deserve a treatment that can make them better too?
The only way we’ll know if an Investigative New Drug in a FDA-granted Expanded Access Program can help more moderate and severe patients is if they can afford to be in the program. Even if reimbursement is possible, it could still be cost prohibitive. That’s why we need pre-approval for investigative new drugs in compassionate use cases where the patient has failed a first line medication if there is one, they can’t or won’t take an anti-amyloid drug, and there are no other clinical trials in their area or for their severity and type of dementia…they’re basically at the end of their rope - they keep getting worse.
So can the Alzheimer’s ambassadors for the US representatives please suggest better coverage for promising INDs like TB006, because those families need some hope too and I’d like to get more caregivers a result like mine with my mom’s reversal which has all but eliminated the caregiver burden outside of laundry and shopping.
Or is compassionate use expanded access only supposed to be for wealthy dementia patients?
Apologies for the run-on sentence missing a question mark.
Can't wait to read this book! Just hearing you read one chapter brought me to tears. I can't imagine how the entire book will broaden my mind, increase my sympathy, and inspire change.
A great recap of Forum, Sean! Such an upbeat post, too. We'll be in touch.
Thanks for sharing! Looking forward to the book coming soon and all of the updates! I can’t wait for August!!! 🎉🥳