Current plot

Type 1 and LADA
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Current plottings against the system are as follows. It might just be rambling, I don’t know.

I think that I just want to be able to say, “NO,” to the insurance company without them revoking my access to insulin or insulin delivery systems in a way that results in my immediate death. I think there is a way to do this…albeit a very impracticable way. It’s so impractical that it could accidentally result in my death. I want a somewhat more practical plan that isn’t totally unexpected. I want to schedule this experiment. When they randomly suspend access to medicine and medical devices, that’s really stressful. But they do it so frequently, and in such a wide variety of ways, that I have fairly resilient mechanisms for dealing w/ those system failures. I’m experienced.

I FEEL LIKE, as a diabetic, I don’t have the right to refuse care in any capacity. Other patient communities do have the right to refuse care. Some patient communities have the right to refuse care, even if that decision results in their death.

For example, A man who is having a heart attack has the right to refuse care. He can tell his paramedics to, “■■■■ off,” IF he is of sound mind. If he is drunk, then waives all right to refuse care because he is assumed to have, “impaired thinking.”

Diabetics are generally/legally/medically assumed to be of, “sound mind,” as long as their blood sugar is above 79. You can get in legal trouble for operating a car with a blood sugar that is NOT above 79 because the cop/First Responder assumes you are not of, “sound mind.” There is also a high blood sugar number where you are assumed/understood incapable of rational decision making or even understanding what your medics are saying to you, but that is more medically complicated. Individuals in the midst of a psychotic episode are assumed to have the capacity for, “rational decision making,” and can refuse medical care. I think that’s the most complicated of all.

But, let’s think in the context of legal argument and medical ethics. When my insurer calls me up, out of the blue, and tells me I need to schedule another doctors appointment, can I tell them to, “■■■■ off” ? The practical answer is, “No.” But what is the answer according to the law and medical ethics? In a practical sense, is there any way that I can tell them, ‘No,’ without them immediately terminating my access to syringes? At a bare minimum, without unfettered access to syringes and measured access to insulin, there is no mechanism thru which I can sustain my own life. I’ll die in 3 days. The insurance company has no qualm about pointing those guns at me constantly. I can get unfettered access to insulin and HIGHLY MEASURED access to syringes. At any given moment, I can go to the pharmacy and buy 2 packs of syringes. That’s enough to hold a diabetic for 2 - 4 days, if they ration them. Why only 2 days? Because the law was passed on behalf of IV drug users. 2 packs of syringes will sustain an IV drug user for a wile, but not a diabetic. We just take WAY more injections on a daily basis than they do (I suspect).

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IDEA FOR PRACTICAL, MIDWESTERN, “STREET MEDIC” LEGISLATION: I think that if my goal is to regain some capacity, as a patient, to refuse care (tell the insurer to “f-off” when they tell me to schedule four doctors appointments per year, or else they will take away my birthday (aka insulin, or some mechanism to deliver insulin)), then I would change the law so that I have legal, unfettered access to syringes. That’s the practical way to do it. I’m not 100% sure if that IS my goal, or is my ONLY goal…I’m just trying to think through this. Feel free to challenge any part of this thought process that doesn’t make sense.

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IDEA FOR MORE MEDICALLY COMPLICATED/CONTROVERSIAL LEGISLATION: I gotta think about this more. If my goal is to eliminate paperwork bureaucracy and reduce irresponsibley erected barriers to care, then I do something to prescriptions. I want one year (minimum) scripts for anything that is “necessary to sustain life,” because the alternative is that they have too much leverage in erecting barriers to care. They use that to ransom patients. This is tricky, though, and I don’t know how to go about it. I might need diabetic input.

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If I suddenly ruled the world, I would make basic life sustaining supplies available without prescriptions, and pretty cheap/free. In our case- either vials and syringes or maybe pens and pen needles (always as a combo so you can actually USE the magic liquid! And meters and strips too) but also rescue inhalers and epipens and a whole slew of other things I probably don’t know about.
But my basic premise would be that for chronic diseases, maybe we get a single permanent prescription at diagnosis, but maybe skip that entirely? And especially for the stuff that has no “fun factor” (insulin isn’t fun to take recreationally) just give us the basic life-sustaining stuff no questions asked, no allotments, no monthly limits.
If you want something fancier- a pump perhaps, a CGM those would be categorized as ‘nice to haves’ and thats where more hoops can appear, but Id still rule against prescriptions shorter than a year for treating any chronic disease, and insurance would just have to cover anything that had been prescribed at whatever co-pay the plan dictates, but they would not have the right to deny a prescription that had been prescribed.

And thats how I would run the world.

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Four appointments per year? Like you’re suddenly not gonna need insulin anymore?! Stupidness.

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You’re describing being a diabetic in New Zealand. That’s exactly how it works here (except for the permanent prescription…we have to go back to our GP every 90 days for Rx repeats and they generally charge $20-30 NZD if not part of an appointment- doctors do not “call in” for free like in the USA, and Rx are not for a year). But otherwise everything is provided at no cost, including pumps, supplies and CGM. You just go to the pharmacy and pick up your stuff.

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Since in the US we don’t have a single-payer system and a political system cursed by powerful industry (in this case pharmaceutical) lobbyists I don’t expect to get my life-sustaining Rx’s for free. But I am angry about receiptrs showing a retail cost of $425.00+/vial for a product that costs $8.00-10.00/vial to manufacture and distribute. My biggest headache comes from having to prove I still have T1D, that “at my age” I haven’t outgrown it (“isn’t T1D what was called juvenile diabetes?”) I think that once you have a valid Dx, it should be accepted. When my employer changes health plans I have to go through (and pay for) the confirmaiton lab tests. And heaven forbid, my time for a refill has arrived and I haven’t proven I am still a person with T1D!

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But how do we do accomplish this? I feel like we have a couple different options:

1.) If you have a T1 diagnosis, then you might as well have a prescription that never expires for syringes, BG strips, whatever tech you need, insulin. If you want a new insulin, then maybe you need to get a new script. The Docs would be fine with this. My Doc told me that his office writes 22,000 scripts per month. He doesn’t want to do this. But the insurers will throw fits, right? They want to be able to bill those $300 specialist appointments and as many as possible.

2.) We make it so that syringes just never need a script for anyone. That’s fairly simple. That makes them OTC and maybe brings down the price. That provides a backup for when other scripts fail. At least we can deliver insulin.

3.) We make the scripts valid for a year (or indefinitely) so we, at least, reduce some paperwork burden. When a Doc writes a 3 month script for a medication like insulin that everybody needs forever, you are essentially just creating a barrier to care. That might not need to be tolerated.

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A House member suggested to me the other week that might be some way to “hit them with a stick” if they don’t fulfill their duty. I like that idea and believe it could be effective, but we are low on specifics. It’s just a sort of brainstorming.

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I’m starting to write, so if you have perspective that is helpful to incorporate, please feel free to note it here…

Duty to Provide Care

If I were a twenty-year-old kid, working as an Emergency Medical Technician (EMT) in the state of MN for $20/hour, I would uphold my legal duty to provide patient care. What does that mean, legally? It might mean that on a Sunday morning driving home in the snow, if I see a family car rollover, I pullover to check the welfare of passengers and provide medical assistance until someone on duty, of higher medical credential than I, arrives. Once I pulled over and established care, I would not simply decide that I wanted a sandwich and leave the injured alone in a snowbank. That would likely be considered a crime called patient abandonment.

Working as a medical device tester for a small company in town, I once inquired about our legal duty to ensure patient safety associated with that device. My boss told me that because medical device developers were “fairly high up the chain” of medical authority, we were granted a certain amount of grace, under the assumption that we would practice our professional craft in accordance with common standards of medical ethics and law. Some weeks later, that same boss told me that, “The best way to test medical device software was on patients.” I immediately broke into a cold sweat. I stopped being able to sleep. I spent three days considering what he meant by that, then I quit. But the question persisted, “As me move up the chain of medical authority, from EMTs at the lowest levels of wage and medical credentialling, to higher levels of medical credential, do we still see adherence to even the most basic legal standards of care?” For the purposes of exploration here, I include the following standards of care: 1.) Duty to Provide Care up to a standard of care in accordance with one’s training/credentials; 2.) Patient abandonment; and 3.) Medical Negligence. I will assume the most basic understanding of these concepts, associated with 3 months of medical training and licensure at the level of EMT-Basic. I will use my experience as a type 1 diabetic to evaluate the degree to which basic standards of care are practiced and enforced.

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Umm…as far as I’m aware, the more frequently we see doctors the more insurance pays. Are you billed by your insurance to see the doctor? In my case, the doctor bills the insurance, the insurer pays out money and then the doctor/practice comes after me for the rest.

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I don’t know if anybody knows. It gets tricky when the clinic is owned by the insurer and the Doc is employed by the insurer. But lets ignore that, for now.

Do you think its common, across all illness groups, to be granted only a three months script for something like insulin that they know is necessary to sustain life? For example, are asthmatics required to do to four appointments per year to gain access to an inhaler?

What about severe allergies? Do they have to go to the Doc every 3 months in order to gain access to an epi pen?

I ask because they have a Duty To Provide Care. But I feel like most of what they do is restrict access to medications and medical devices. Here a the definition of that duty.

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I don’t know what is common. In my case, my insulin prescriptions do last a year. I assumed that was not unusual. I’ve had different insurances over the years and never had any trouble with insulin prescriptions, either with their expiring before a year or with doctors not renewing them routinely.

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You don’t seem to distinguish between prescriptions for Controlled (Schedule I,II,III,IV,V) and uncontrolled drugs. Insulin is an uncontrolled drug, and therefore, in the US, a prescription is typically valid for 1 year. Some states can be more or less restrictive on Uncontrolled drugs and can issue prescriptions for up to 24 Months in 6 states. Doctors tend to over-prescribe insulin when asked to so that we never run out during vacations, late deliveries, pharmacy screw-ups, lost deliveries, etc. On top of that with a 1 year prescription, if you take your last refill on day 364 of the prescription, you will get an additional 90 day supply. There is no nexus between the length of time a prescription is valid and the required 3 month pumper or 6 month MDI visits that need to be done to get Medicare to pay for for diabetic supplies. Before Medicare, I was on annual endo visits. Once on Medicare, I was told by Medicare I need to go every 6 months to Endo visit as that saves the government money over annual visits.

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Is THAT the convention and why?
That seems conventional to me.

Maybe this Doctor’s nurses are just ■■■■ at writing scripts. I have to call and have each script rewritten, sometimes 3 times in a row. So, now I send them very detailed prescription requests in writing. But it doesn’t help. I think he told me that his staff writes 22,000 scripts per year? Is that possible? It sounds unbelievable.

I’m never 100% sure if its the Docs fault or the pharmacies fault. He’s otherwise a decent Doc. It’s unfortunate. I haven’t had problems like this with scripts making me come up short on supplies in ages. They write them bare minimum. They gave me 50 test strips for the whole year with no refills - stuff like that.

That’s helpful info. Thank you.

Maybe the stars of misery all just aligned. I got a Doc who can’t write scripts. I got a pharmacy that can’t fill a script to save its life (Walgreens was privately purchased this week, so that explains some of it). I’m running a medical device that no one else runs and that brings another source of failure into the pharmacy computer systems. The insurers have been bullying me.

All of that put together makes it seem like the system has collapsed and it kinda has. But I think that explains all the failures of late. Plus, I wore a werewolf sweater when it was not Halloween, in an effort to buy syringes and looked somewhat unreliable. I think that explains all the problems of late. That’s it! Eureka!

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You are the patient, and sometimes the stars, for whatever reason, don’t line up, and just like any other lousy customer experience, it may be time to walk away and find another endo. Life is short, really short, and we must choose our battles carefully. Taking on a cause is a noble effort. However, fighting for that cause must be worth the effort, and every cause has a tipping point where the effort is not worth the time and aggravation.

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Fair points. But riddle me this - I just got this Doc (an Endo) in order to solve problems with the previous Doc (a PC) not being able to write scripts. He came highly recommended.

I don’t believe it can be qualified as this. I believe that the frequency and magnitude of failures is the result of the highly monopolized markets.

Its not a consumer market. Its a market for which my participation is forced. That creates different misincentives. For example, system complexity. The system is so aged and brittle that it lacks the resiliency to perform even basic functions.

When it can’t perform basic functions, it not just a market failure. It’s a failure in Duty to Provide Care. That’s the medical systems primary practical purpose and a sacred moral duty. Any kid, working on an ambulance for $20/hour would be sued into bankruptcy for Duty of Care violations. That duty exists all the way up the chain, even though it is blatantly disregarded. That disgusts me.

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I might be on kinda a tear over this. I’m throwing the idea across a random doc on the internet, named Howard, who is always bitching about prior authorizations. It frustrates me how much the Docs ■■■■■ on the internet, but they never DO anything. They are totally complacent. The result of that is that patients and pharmacists have to do all the docs own work for them. I think they should do their own work. I think they should help us.

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Maybe it illustrates some of the extremes in experience and perspective that are generated on either ends of the spectrum by a highly disordered, monopolistic market.

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If the politician was referencing Roosevelt’s “speak softly and carry a big stick; you will go far” the explanation was “the exercise of intelligent forethought and of decisive action sufficiently far in advance of any likely crisis”. Too late, the problem is now. Hitting the industry with a proverbial stick of dynamite would be more effective.

Spitballing some ideas, not all would work together

  • Ban PAs. Mandate health plans offer free, real time coverage checks that can be used by docs and patients.
  • Pharmacies must publish a price list of all drugs available from the pharmacy. Pharmacies may not charge a different price to different customers. Note this doesn’t preclude a customer paying a copay and a company paying the remainder
  • Drug benefits must pay for all medications prescribed by health plan in network doctors without QL and ST. This eliminates formularies. If days supply is part of the plan it is calculated by the doctor as part of the prescription.
  • % copays cannot be combined with tiered formulary lists
  • A company offering health plans shall offer all contracted doctors to all customers. (banning artificially small doctors networks)
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You overestimate the type of legislation that I have the power to move, personally, spdif. :sweat_smile: But it’s good to hear some thoughts on it all.

Ban PAs. Mandate health plans offer free, real time coverage checks that can be used by docs and patients.

I’ve not heard of anybody working on anything like this.

Pharmacies must publish a price list of all drugs available from the pharmacy. Pharmacies may not charge a different price to different customers. Note this doesn’t preclude a customer paying a copay and a company paying the remainder

The closest thing to this that currently exists is Drug Transparency Reform. The big thing this week, related to that, was this: Trump signs healthcare price transparency executive order | Reuters In there, you will see that they came at the transparency issue, NOT from the pharmacy side, but from the hospital side. There’s two sides. No one ever works on the hospital side. Everyone is preoccupied with monopoly busting the PBMs. Why? Because there a lot of ‘bad blood’ with the PBMs from back in state legislatures. Everyone hates them. But there are valid reasons for that.

"It required health plans to post their negotiated rates with 
providers, their out-of-network payments to providers, and the 
actual prices they or their pharmacy benefit manager pay for 
prescription drugs; and to maintain a consumer-facing internet 
tool making price information accessible."

If you come at the drug transparency legislation, alternatively, from the pharmacy side, you will see a lot more legislative actions in the works because the pharmacists are EXTREMLEY active, legislatively.

Most legislation starts at a state level, then it spreads to other states, and if enough states work on it, then it moves up into federal hands for consideration. Diabetic patients move a lot of legislation at a state level. They have been very active since c. 2018. As you will recall, that all got started because of insulin pricing and some high profile patient deaths. A lot of patient advocacy laws (particularly diabetes) seem to stem from someone’s mom or dad going down to the capital and raising hell after a death. It’s our parents and its born of parental grief.

insulin pricing → healthcare pricing, more generally → PBMs, etc.

That’s all gone federal.

The pharmacists came up behind the diabetics. They work on a lot of the same PBM and drug pricing issues. But this is their first year in federal legislation, really. They kinda just arrived after doing a ■■■■ ton of work at the state level. But they had a couple federal bills move last session (2024).

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NCPA Source https://ncpa.org/sites/default/files/2024-05/aspl-key-updates-pharmacy-law.pdf

In here, you will be a lot of common drug pricing terminology, like “rebates,” and “spread pricing.”

But this session, you should see the pharmacists move NOT on ‘drug price transparency,’ but ‘drug pricing.’ It’s actually a much bigger punch than simply asking them to disclose data. Its an accusation of “price fixing” in the markets, which is illegal (maybe). The diabetics will work on this legislatively, but their big deal is the FTC case in administrative court. That’s historic because it will be the first effective thing of its kind that has succeeded. Everyone before them has failed.
Source: https://www.ftc.gov/news-events/news/press-releases/2024/09/ftc-sues-prescription-drug-middlemen-artificially-inflating-insulin-drug-prices

The pharmacists will punch hard legislatively on price fixing and market fixing. They are a bunch of bad asses because they bring numbers and data with them. Diabetics don’t have access to that stuff, but its really important when you are trying to talk to lawyers. Congress is all lawyers. Congress is a lot like a court.

You’ll see pharmacists bring federal bills like, “The Patient Before Monopolies Act” That stuff has all moved up from the states. It’s all super bipartisan. It’s gonna move fast.
Source:https://www.warren.senate.gov/imo/media/doc/patients_before_monopolies_pbms_act_-_one_pager.pdf

The pharmacists are fighting antitrust because they are being put out of business by the PBMS, and the small, family run businesses, aka “independent pharmacies,” are furious. They are in a rage. They lobby hard. Like, look at this ■■■■: https://www.truthrx.org/pbm-on-the-rocks

This is new from the pharmacists,. They are mad at the wholesaler and Medicare reimbursement. Independent pharmacies oppose Medicare’s drug price negotiation

A lot of transparency (with respect to drug prices) is kind of underway at a federal level. But it moves in tandem with these other legislative initiatives (if that makes sense). Right now, no one can get data out of the PBMs. FTC will be the first (other than the Change healthcare hack that occurred last year against UHG by the Russians. That was a big deal). If they can’t get data out of the source, then they can’t litigate or regulate. This stuff all happens in a couple steps:

1.) They need to get data; 2.) They pass legislation/regulations based on that data; and, 3.) They have to actually be able to enforce those laws they just created.

It’s all really slow, but its moving.

Drug benefits must pay for all medications prescribed by health plan in network doctors without QL and ST. This eliminates formularies. If days supply is part of the plan it is calculated by the doctor as part of the prescription.

What are QL and ST?

% copays cannot be combined with tiered formulary lists

This is interesting. I don’t think anybody has ever tried this, but its interesting.

A company offering health plans shall offer all contracted doctors to all customers. (banning artificially small doctors networks)

I think this would be federal legislation because it relates to large employer sponsored private plans??? And that stuff can only be regulated at a federal level…maybe? I’m not 100% sure.

The ONLY thing that I have EVER seen related to health insurance networks is this: How to fix healthcare with the single stroke of a pen | EBA | Employee Benefit News

It’s written by a doctor. It makes me really mad and I bitched at this doctor because I feel like doctors never make the effort to walk anything down to a member at their state capitol. It would be SO easy for them, but they don’t show up. Never in history has a single doctor ever walked a single piece of legislation down to anyone at any capitol anywhere. It make me mad because there’s so many problems that they could help fix. They are lazy ■■■■-offs who ■■■■ and moan, but don’t act. I tell them so. Regularly. Maybe every day. What I find most annoying about this is that it is addressed to the President. Like, “I’m a Doctor. I got straight A’s. I demand a meeting with the President.” You know how long one of our diabetics worked on PBM reform before it made it into the hands of the President?

20 years.

I find everything about the doctors annoying. I wish we could get nurses to move some legislation. Nurses aren’t so annoying.

I am now actively trolling the Docs.

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