The Docs asked for an article on how diabetics influence medicine through unconventional means, like Loop and patient built APS systems…but also all the unique things we do as a community. I think I’m gonna write something like this. If you have input about something that I should not forget to add, let me know.
3 Likes
The Doctors are killing me today. I’m changing what I planned to write.
1 Like
We need to be creative in additional ways. I am MDI and have been using wonderful digital pens that dose in 0,1u for near 20 years. These pens are not available in the US, but I have been happy ordering them in Europe or China as they are all made in Korea or China. They are, of course, not FDA approved but who cares. They work great and that is all that matters.
I have also ordered my insulin from Canada, self pay, for many years because even self-pay was a lot cheaper than my US insurance copay.
Necissity is the mother of invention and as long as we are willing to think Globally out of the box, we have an ever increasing number of options available to better control our condition at a lower cost.
2 Likes
Do you think that the Doctors lack the “necessity” to change anything? I really struggle with this. Sometimes it feels like they are just sitting back, collecting a paycheck at our expense. Look what they are writing now:
I don’t think they have forums to discuss problems like we do. How will they ever problem solve? @DrBB, what platform is Tu build on? Looks like wordpress. They need something like this. They are using FB. That’s no good for complex problem solving.
Thanks for the feedback on this. Gaining access to supplies IS a big deal and people do a lot of creative things to acquire meds.
The Docs are on the move. They are moving down the rabbit hole trying to figure out if they can make a legislative move. They are discussing their options. You can watch them on linkedIn. Dutch Rojas on LinkedIn: “Price transparency won’t work.” That’s what fancy people keep… | 66 comments They will primarily need to discuss all this on their own and try to wrap their hands around it. They are doing that. All I can do is feed them information about the legislative landscape so they develop the best strategy that they can.
1 Like
Some people say that they too often thought the Docs would help, but that they never will. Why? Is there some kinda professional conflict of interest? I don’t understand. Patients and pharmacists are working on the antitrust problems. Why not Docs?
1 Like
I don’t think this will help the issues you are concerned with.
You don’t think so? You don’t think that if they just used the power of the internet, they could fix stuff?
It troubles me that the Docs aren’t moving to fix stuff on a number of levels:
1.) It makes them seem corrupt because patients fix stuff for free. Why can’t they? There’s so many of them and not very many of us. Seems like they could definitely fix something. The pharmacists are fixing problems. But maybe people only fix difficult problems when their lives or their livelihoods are at stake. Maybe we aren’t holding them accountable enough. But some of their problems are kinda complex and the insurers and hospital systems are pretty sneaky.
BTW, thank you. I was looking at wordpress and it was $400/mo.
Do Doctors have the capacity to fix stuff? Maybe we should run a poll.
They are going all nuts on certain platforms as if they are preparing to make a move. That could be good for us because there are not a TON of diabetics. But if there are diabetics, pharmacists, and Docs, it’s like a trifecta of trouble. I like the whole idea of it.
I see some limited movement that might be valuable and overlapping with work by pharmacists and diabetics. Its hard to say. https://www.youtube.com/watch?v=uJrt66XpXTI
I think this is Docs on the right course: https://www.youtube.com/watch?v=uJrt66XpXTI
I get your sense of urgency around this but what you describe seems more of an organizational issue than a tech issue per se. As your description points out, there are a lot of platforms. It’s more an issue of how do you get a disparate group of people to coalesce around one of them. I guess an “If you build it they will come” approach might work but that takes an organizational initiative to get started. Once you have that, there are plenty of tech solutions, some quite specific to political advocacy groups.
1 Like
I don’t know if they can do it.
I don’t really care WHAT they do, but I would like them to do something.
Scott Strombello has been writing stuff. Its hard to get any info out of him. He had come and gone before I even showed up on this forum. I think @Terry4 was here before me and he might remember Scott.
I respond to him, with this. He never writes back, though. He’s sick of talking about PBMs…in the way that we are all sick of talking about PBMs, but can never stop.
https://www.mayoclinicproceedings.org/article/S0025-6196(19)31008-0/fulltext
1 Like
Maybe what I really want to know is HOW these distributed networks of people all interact to produce events. Scott doesn’t see the big, overall picture of how this works and I don’t either. But everybody can see some things. Maybe if I make a data visualization, people can decipher more interactions that we don’t yet know exist. Maybe I can make a timeline of events or something like this that is interactive: https://finance.yendor.com/ML/fileshare-d3js/
But, maybe it is more relevant to visualize the data geographically.
Maybe you have to be able to see the data in many different ways to understand
I’m sorry, I don’t remember Scott Strumello. There have been many people who posted a lot for a time, then disappeared. I’ve been a member since 2009 or so. My memory is not always the best. I even have to go back and reread some of what I’ve written before.
I searched using Scott’s name and read some of his posts. I suspect I read them at the time as they are the type of quality that I like in a posting here. He explores various topics thoroughly and his point of view is interesting to me.
In one 2010 post entitled, “Why Anger Plays A Critical Role In Diabetes Self-Care” he shows how he’s used anger to improve his diabetic health. I agree with his sentiment as I’ve used anger (mostly at medical health care professionals) to refine my self-care to levels most doctors don’t believe that diabetics are capable of. I didn’t harbor the kind of anger that eats away at your soul, however. This anger motivated me to prove misinformed and ignorant medical professionals wrong while making me healthier.
I’m sorry to detour from where you wanted this post to go, @mohe0001.
1 Like
I worry sometimes that the history of all this will get lost. Maybe if I make an application, we can better trace the influence of all these invisible factors that lead to where we are today.
Can you imagine how mad you would be, @Terry4, if you had been working on PBM reform for EIGHTEEN years? I would go off the deep end. It’s barley tolerable now.
Patient registries have proven invaluable in understanding rheumatoid arthritis (RA). Every six months, many RA patients contribute to a comprehensive database by completing detailed surveys. While these surveys can be a pain in the butt, they serve a vital purpose: tracking real-world treatment outcomes and patient experiences. This centralized system has become remarkably effective at identifying emerging trends. For example, it detected interactions between biologics and marijuana use long before these issues appeared on researchers’ radar.
Patients feel safe reporting their use of alternative or complementary therapies, even those that may not be legally sanctioned, and sharing whether they discuss these treatments with their healthcare providers. With roughly 3,000 participants completing surveys twice yearly—some, like myself, for over a decade—the database represents a robust source of patient-centered information.
The diabetes community would benefit tremendously from a similar system. We’ve already seen how patient-driven innovation, particularly in automated insulin delivery systems (looping), has influenced manufacturers to develop commercial alternatives. But advancing medical science requires more than just innovation—it demands that researchers actively listen to patient experiences. A well-structured registry, like the one used in RA, could bridge this gap, creating a powerful feedback loop between patients and the scientific community.
1 Like
How interesting is that?!?! Thanks for the heads up.
I am, personally, starting to find it very confusing to talk about myself in any honest way without mentioning my patient experience in an interview. Partially, it’s because of publication on Loop, but it’s also just my hate for broken software in the medical system that I know flows downhill into patients laps. It all becomes inseparable and interwoven. It’s tricky because the relationships between different entities in the system is complicated and a little bit troubled right now.
1 Like
CJ114, Can you give me the name and number of the Canadian pharmacy you got insulin from? Did they mail it to you? Right now, insulin is affordable, but it would be helpful to have that info in case things change.
There are a few mail order sources in Canada but I used Canadianisnulin.com They are reliable and accept MasterCard/Visa. They do not accept AMEX. They ship in insulated containers with ice packs and delivery to US East coast is about one week. All Canadian mail order pharmacies now require a copy of your US prescription even though Canada does not require prescriptions. They include your copy in the shipment to assure there are no issues with US customs. The cost of the insulin is inexpensive compared to the US, however, if you live near the border you can save about 1/2 of the mail order cost by picking up your insulin at any pharmacy. The only issue with picking up your insulin in Canada is that they will now only sell you a one month supply, where previously I could buy for 6-8 months at a time.
At this time, I am not buying my insulin in Canada as I am on Medicare, so my insulin costs less than $35/month in the US.
1 Like
Mark’s Marine Pharmacy has been used by many people for a long time because they ship. https://canshipmeds.com/