1. How do you think payers can best "engage " patients in your own diabetes care?
I think that this is a civil rights issue that should be phrased as such. I've run into restrictions and received letters from BCBS "Medicare says you need 4 strips/ day, so that's all we owe you..." but, when pressed, they have caved in. I should not need to spend my time pressing them. The way to go after "grey-market" sellers selling extra strips on Ebay is to...go after grey-market sellers. It seems very reasonable to contend that we should be allowed to know what our BG is as tracking that data (ha ha, ok, I still don't write much down...) is very important to our overall health and to improving our ability to take care of ourselves. I would like to see health insurers including Medicaid/ Medicare recognize this as a proven, scientific fact.
2. How is FDA doing with its efforts to "engage" patients?
Other comments: It was nice of them to talk to us. It is not nice that products which are proven and available in "civilized" countries (e.g. the Animas Vibe system...) are witheld from the US market because of bureacracy. Perhaps there's an invisible hand operating there as the US also has a stronger plaintiff's bar protecting consumers from mishaps. Perhaps a simple way to regulate the "safety concerns" underlying FDA involvement might be to employ actuarial science to calculate the risk. Johnson & Johnson (the maker of Animas...) should be allowed to make an actuarial case that the risk of their system is what it is and then the number "ok, so far the Vibe has killed ____ people" and, if the number is acceptable, well, they should put it through. A corollary would be that if an actuarial risk can be calculated, it can be underwritten in which case a manufacturer could simply include their cost for insuring the calculated risk into the cost of their unit. It's absolutely horrible that there is risk associated with our devices but, well, that's why we're so damn tough. If the value of a dead PWD is c. $8-9 million (the Seattle case...), the manufacturers can insure pump mishaps.
3-4 How would you want your doctor/healthcare team to best "engage you" in your own diabetes care? and How could your hospital / clinic better motivate and communicate with you?
I'd like to see doctors pay attention. I mostly go to the doc and get patted on the head. I get very little concrete advice and, at this stage of my life (47), I have very low expectations out of my $800-1200 per year. I'm so numb to the possibility of helpful medical advice that this is a hard question for me to answer. I like my docs pretty well (although endo is a bit shaky right now...long story...) but feel a bit shortchanged by most of them. I like my GP very well but even there, he just goes "keep on doing what you're doing..."
5. How do you think large pharma/medical device companies can best "engage" patients in their own diabetes care broadly speaking? Do you have specific examples?
I am very happy with what I get from Medtronic. I would like to know more about their efforts to fight FDA delays as I mentioned above.