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Taking my diabetes treatment into my own hands

martin.janiczek.cz

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Re: Taking my diabetes treatment into my own hands

#331

Post by autoexec »

s1artibartfast wrote: post #329
autoexec wrote: post #325

Earlier quoted context omitted.

> I have never experienced or heard of a doctor deceiving or lying in real life. Meet Dr. Stella Immanuel who tells her patients that medications are made from alien DNA and that their illnesses are caused by demon sperm. In the USA she gets to keep her medical license/practice. ( https://en.wikipedia.org/wiki/Stella_Immanuel ) See also: every doctor that accepted bribes from Purdue Pharma in exchange for knowingly p…

I included real life as an intentional qualifier. I know that quacks, grifters, and criminals exist. The fact that they exist doesn't bother me. Some will always exist. What matters is how common it is and what the average experience is. I don't think most doctors treat their patients the same as Stella Immanuel. Same for the two doctors that perdue was convicted of bribing

Half of all doctors in the US accept money or gifts from drug and device companies. (https://www.statnews.com/2020/12/04/drug-companies-payments-...)

Re: Taking my diabetes treatment into my own hands

#332

Post by s1artibartfast »

autoexec wrote: post #331
s1artibartfast wrote: post #329

Earlier quoted context omitted.

I included real life as an intentional qualifier. I know that quacks, grifters, and criminals exist. The fact that they exist doesn't bother me. Some will always exist. What matters is how common it is and what the average experience is. I don't think most doctors treat their patients the same as Stella Immanuel. Same for the two doctors that perdue was convicted of bribing

Half of all doctors in the US accept money or gifts from drug and device companies. ( https://www.statnews.com/2020/12/04/drug-companies-payments-... )

I actually really liked that article and how it at least tried to present both sides. However, I tend to agree with the opposing side, but think there are some edge cases that could be improved. I have spent my career working in drug and device development so I probably have a more nuanced view informed by my experience. I have payed millions to doctors, and think my actions are justified.

One thing that the article touched on that I like is the role of non-industry associations, which I think could do a lot more to spread information. However, there's no one that will pay them to do it.

Re: Taking my diabetes treatment into my own hands

#333

Post by croemer »

gumby wrote: post #104
croemer wrote: post #56

Earlier quoted context omitted.

I've never had DKA in 12 years. How does it happen? I've been on CGM (Libre/Dexcom) and it's impossible to get high enough values unnoticed to end up with ketoacidosis for me. Even before with sticks, I just measured often enough. Would be really curious to know more how DKA happens to you!

Just living my life in an urban setting it’s never been a problem. Had a serious episode about a month ago (ketones at 9 mmol/L). I was on a short backpacking trip with some friends: four 15 mile days. I don’t carry a lot of carbs. My pen became hot despite my best efforts. Had another episode earlier in the year in a similar trip backpacking in the snow — shorter distance, harder work; my meter froze and stopped wor…

Thanks that's great context! I don't think I've been out as long in similarly harsh conditions.

I always carry plenty of backups, usually duplicates, because CGM sensors can fall off and it happens that I screw up the insertion, so having at least one is good. Also I always carry some old-style sticks with me as backup.

To prevent freezing/overheating of insulin, I'd probably pop some vials into a small thermos filled with room temperature water. Just dropping into a bottle of water is also better than leaving exposed to air.

Re: Taking my diabetes treatment into my own hands

#334

Post by samjbobb »

lisper wrote: post #302
samjbobb wrote: post #270

Earlier quoted context omitted.

FYI for any other EoE folks: Dupixent is now indicated for EoE. It’s resolved my symptoms completely (both the ones I notice and the ones my gastroenterologist checks via scope). I don’t experience any side effects. It’s an off-label use, but swallowed fluticasone is also effective for many people. Also has no to minimal side effects. I did that for many years before dupixent was available. Exciting that you figured…

> Dupixent is now indicated for EoE. It’s resolved my symptoms completely How often does it need to be administered? Regular injections sounds like it might be more trouble than it's worth.

The indication for EoE is weekly, though I seem to be able to get away with every other week.

Dupixent is a subcutaneous auto-injector pen, so it’s the least-bad injection.

Injections definitely suck and everybody has to make their own trade-off assessment.

If you can’t figure out your triggers, and a lot of people can’t, it’s great that we have an effective therapy available now. It dramatically improved my life … once I got over injection anxiety

Re: Taking my diabetes treatment into my own hands

#335

Post by autoexec »

s1artibartfast wrote: post #332
autoexec wrote: post #331

Earlier quoted context omitted.

Half of all doctors in the US accept money or gifts from drug and device companies. ( https://www.statnews.com/2020/12/04/drug-companies-payments-... )

I actually really liked that article and how it at least tried to present both sides. However, I tend to agree with the opposing side, but think there are some edge cases that could be improved. I have spent my career working in drug and device development so I probably have a more nuanced view informed by my experience. I have payed millions to doctors, and think my actions are justified. One thing that the article…

> I have payed millions to doctors, and think my actions are justified.

You aren't at all worried that paying those doctors will result in them prescribing something to a patient when they might not have otherwise or influence their choice for one option over another? I'm not talking about the education or awareness a doctor might get, purely the influence of the money/benefits and perhaps their hope to get more of the same from you later.

Re: Taking my diabetes treatment into my own hands

#336

Post by s1artibartfast »

autoexec wrote: post #335
s1artibartfast wrote: post #332

Earlier quoted context omitted.

I actually really liked that article and how it at least tried to present both sides. However, I tend to agree with the opposing side, but think there are some edge cases that could be improved. I have spent my career working in drug and device development so I probably have a more nuanced view informed by my experience. I have payed millions to doctors, and think my actions are justified. One thing that the article…

> I have payed millions to doctors, and think my actions are justified. You aren't at all worried that paying those doctors will result in them prescribing something to a patient when they might not have otherwise or influence their choice for one option over another? I'm not talking about the education or awareness a doctor might get, purely the influence of the money/benefits and perhaps their hope to get more of t…

The vast majority of the payments are either education or payment for services rendered, like the article mentions.

At a high level, companies actually think their products have value to patients and want doctors to know about what it can do. It is virtually impossible to decouple knowledge sharing from influence. The point of knowledge sharing is to impact choice and behavior.

On the services front, If I want to hire a doctor to fly across the country and do Brian surgery on a pig or cadaver, I expect to have to pay them. Similarly, if they are running a clinical trial, I expect to fly them to the surgical training and feed them, and pay for their time.

>purely the influence of the money/benefits and perhaps their hope to get more of the same from you later.

Direct kickbacks for prescriptions are a thing of the past. It is pretty hard to come up with a situation where future benefits is conditional on the behavior. Like, I suppose you wouldn't invite a doctor that doesnt use your product to give feedback on it or be part of a clinical trial, but that is a niche feedback to worry about.

Lastly, articles like are very misleading when it comes to the details. In their reference for $2B in payments [1], includes things like Royalties.

>The greatest proportion (27.3%) of value was from royalty or license payments (≈$484 million of $1.8 billion) followed by service fees (26.6%), such as faculty lectures ($472 million of $1.8 billion).

If they are claiming paying royalty or license payments for inventions (like developing a hip implant) are a kickback, it frames the whole argument as rhetoric.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5470350/

Re: Taking my diabetes treatment into my own hands

#337

Post by RandomUser4976 »

Scotrix wrote: post #42

I‘m T1D and using Freestyle Libre + Omnipod Dash and iAPS + Apple Watch. Apple Watch is for me primarily to automate physical exercise detection and target adjustments but also works great with iAPS to control bgs and inject insulin from your watch without taking your phone out of pocket. All built as a homebrew closed loop. While it was somewhat difficult initially to make it work I managed to get over the last year…

Please share more

Re: Taking my diabetes treatment into my own hands

#338

Post by RandomUser4976 »

tekgnos wrote: post #159

It’s all vibes! Type 1 here for 28 years. You are on the right path here but I think you are missing the “big players” for lack of a better term. The prediction software available now (open source) is quite good and works with different types of CGMS and pumps. You are really going to want to look at Loop. Loop basically collects the inputs in the app automatically for insulin if you use a pump. I’m on the Omnipod DA…

Please share more

Re: Taking my diabetes treatment into my own hands

#339

Post by rubing »

sgt101 wrote: post #153
sgt101 wrote: post #152

Earlier quoted context omitted.

This is counter to my experience - my daughter has received fantastic care. We have regular time with the endocrinologist and get phoned up inbetween clinics. They have provided a closed loop system and all the backup we could have asked for. I agree about Glooko, it's not as good as diasend was.

What is it that Camaps + dexcom doesn't do that you want?

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Re: Taking my diabetes treatment into my own hands

#340

Post by rubing »

janandonly wrote: post #76

Very dumb question here, but I don’t dare ask it to ChatGPT. What would happen to T1 or T2 diabetics if we would stop eating all sources of sugars and carbs? So no fruit, no rice, no potatoes and so on? Would it be possible to survive and live comfortably in a state of Ketosis? Or is a 100% ketogenic diet simply not possible on diabetes? I’m asking because my true question is: what if insulin becomes too expensive? T…

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