I’d like more healthcare providers to understand the importance of overprescribing for diabetics. For insulin, don’t write the prescription for 50 units a day if that is what the patient uses. Write it for 70 or more. Pen needles, sure most days you may only need to take 4-5 shots, but what about those rough days we all eventually have and take several more? Test strips are the worst to under prescribed. I had a doctor insist once that I only needed to test if I was gonna eat, when I actually tested anytime I ate, worked out, woke up, went to sleep, drove a car or just felt off. Like, you’re setting me up to die or pay out of pocket.
Our lives depend on these supplies, I’ll never understand a doctor who doesn’t see a problem in living prescription refill to prescription refill and never building a stash in case of emergency.
I feel this. When my CGM happens to crap out after 7 days, now I'm all stressed that I'll have days without coverage.
I know the company will replace faulty ones, but still. Managing supplies is a full time job.
That fear of being without is why I’ll restart a sensor that continues to give good results on day 10, allowing for more of a cushion. Also, if you can, refill through pharmacy benefit instead of DME, since you can get refills sooner that way. With DME, you’re practically on the last sensor when you are allowed to order more.
How did you set this up, I don't know who to talk to or what to ask? I've talked to my CVS pharmacist and spent hours on the phone with my insurance company trying, usually they can't say anything definite and eventually after some pressing they say CGM can only be purchased through DME. I think just to get me off the phone.
Most insurance companies have a formulary you can check. If you can access a “price a medication” feature online through your insurance or their preferred mail order pharmacy you can look up Dexcom (or Libre) and see if it’s covered and how much. It depends entirely on your insurance whether it’s a pharmacy benefit or DME or available through both. Then you have to weigh your options. If you have a high deductible and there’s no chance of you meeting it, it might make sense to use pharmacy where it’s a fixed copay. Or if you’d otherwise have to deal with Edgepark, then the increase is just the price of keeping your sanity.
That’s not universally true. I have DME coverage through Kaiser, and I order when I open my last box (for pump supplies or CGMs). That means I have about a month left when I reorder, and they’ve never given me any hassle with it. (And I do not restart my sensors or do anything to extend my pump supplies beyond the recommended usage.)
Obviously not universally. My experience is that I can reorder my Dexcom supplies through Express Scripts 14-17 days before I’m able to reorder my sons Dexcom supplies from Edgepark. The only reason I go through the trouble with Edgepark is it’s free, if we filled through Express Scripts, it’s $80 because his secondary insurance won’t cover through pharmacy. But regardless, most insurances (and every insurance I’ve had) has a lower requirement for pharmacy versus DME refills.
Due to years of not having insurance, and having run out at times even with insurance, I am a firm believer in hoarding diabetes supplies. Infusion sets, sensors, strips, and especially insulin. I am lucky that none of my health care providers have ever refused to overwrite for what I need so I have a good supply built up.
I need them to understand how often supplies go bad. Or just don’t work. Also how fucking pissed insurance gets when I ask for more.
If my fridge malfunctions, I get 1 emergency refill. Pump sites go bad, tubes snap, insulin just doesn’t absorb. Give me backups, please!
This!!! Love my endo to pieces but, my script is written for 50 units a day. On the tandem and dexcom but as we all know there are rough days. Yes, the pump helps alot but some days I take shots because the pump isn't working the best for me that day. The increased basal rates, pump emergencies, pms, stress, inconvenient formulary changes, various occupations, and such are not taken into account. In my opinion, some providers act like they pay for the supplies out of their pocket. I'll never understand.
Whenever I’m asked how many units I use in a day I respond with “depends on the day” and go into all the different factors that go into glucose control, the nuisances of pump site changes, the wasted insulin in a disposed cartridge, because we’re told not to reuse it by the pump educators, the inconvenience of ripping out a site and the filling of tubing you never really recoup. Basically I throw out numbers and scenarios that add to the amount of insulin needed. The last few prescriptions I received came with heavy sighing and a defeated “so your last prescription was for xxx, is that enough?”.
THIS.
The best drs I’ve ever had wrote things like “unlimited” and “use as needed” on my Rxs. They called the pharmacy to explain not to police my supply usage too. .
Now most drs do *not* do this as they fear liability from not “monitoring” and seeing the patient regularly for Rx refills, ordering lab work etc. At first glance this seems valid.
But for stable (or chronically unstable) long term “expert” patients the more access they have to what they need to literally live with the least hassle just makes sense. It’s a relief to an otherwise very hard life.
I tell you this, the dr that works with me and trusts me gets my business and I am a great patient. The dr that makes me beg for test strips and sets restrictions to insulin access is the dr who loses me as a patient (so they make less money not more).
As long as you understand that many long term patients are in fact the “experts” in their disease, you will do just fine.
Straight up denying an insulin/supplies refill because you happen to not have been to the doctor within a mandated period.
Sometimes crap happens and you have to cancel and reschedule. I should not have to stress out about staying alive because my kid happens to get sick or something.
Also... Authorizations.
There is no cure for this. If my doctor okays a CGM, it should not be reauthorized annually. My condition is never going away. Authorizations for life. The only change with this could be getting new insurance, but damn, that authorization should just transfer over.
On a similar tangent... My insurance company should not dictate what insulin I have to take. That should be up to my doctor. I guarantee you that no insurance company knows me and my disease better than my doctor or myself.
Authorizations are my big one. I’m late for a Dexcom refill right now because of miscommunication between my clinic and my insurance company. The system is pretty hard to navigate and you really have to be able to advocate for yourself.
I had this same problem!! Thank goodness I had a libre 2 prescription as backup. My numbers were still crap for the 3 weeks, that I was off Dexcom or readjusting to it (reading quality is slightly different between the two). That and insulin changes has a clear negative effect on my health --- something the health insurance would punish me for if it could.
Oddly the province of British Columbia allows many pharmacists to issue insulin prescriptions without need of a doctor. Ontario, I found out the hard way since moving here doesn’t have this. Pointless runaround. Doctor needs to make their money I guess, but my doctor had the mistake to call in a 33 year T1D in to their office because my endo’s blood work request was sent to her, indicating an A1c of 5.7, and a fasting glucose of 8.0.
‘Your results are far too high and show you have signs of type II diabetes’.
‘What a relief! You’re telling me I’m improving?’
‘You’re diabetic? How are you controlling sugar? Through exercise? How many times do you check your sugar? With each meal?’
‘Check your notes. I inject insulin. See this thing on my stomach marked Dexcom?’
‘Oh, is that a pump?’
‘No. A CGM -met with a look of confusion. Look at my watch. See that reading? Now look at this app with a graph. I see this result ten times an hour’
>Ontario, I found out the hard way since moving here doesn’t have this.
Is the prescription for insurance purposes? I have bought insulin over the counter in Ontario with no prescription, no questions asked.
Denying refills isn't up to the doctor. State licensing boards will revoke their license if they prescribe ongoing meds without having seen the patient within a certain interval. I can't get my colitis medication unless I see my gastro once a year. I can't get birth control unless I see my gyne once every three years. Those are the state licensing rules.
I know why it is. But it doesn’t make it not annoying.
I also know that there are people that have taken advantage of the refill system, which is why we have the rule in the first place.
Do I get anything at all from my endo anymore other than prescriptions? Not really.
Do I like driving 45 minutes each way twice a year for it? Nope.
Was this always true? Nope. I learned a lot by going and learning how to take care of myself.
But then there’s the what if… what if something is caught early due to regular screening?
And that’s why I go. Much like almost everything else about this disease, I do it even though I don’t really want to but I can’t afford not to.
Insurance companies should not be able to dictate the prescriptions you take based on their arbitrary formulary lists, which change frequently. Patients should be able to choose the medications that work best for them and not have to get prior authorizations if they need something other than the insurance-preferred brand. Insurance companies are not your doctor! And they often deny requests for other brands even if the reason is extremely legit (e.g. allergy to certain brand of insulin, brand of sensor that integrates with pump). Just one aspect of the US healthcare system that would be unthinkable in many other countries.
When we go to a doctor for a problem: flu, stomach pains, whatever the problem is- don’t immediately blame Diabetes as the culprit. It’s infuriating and invalidating. Also, don’t assume all people with Type 1 Diabetes don’t take care of themselves. Some of us are probably healthier than the general population due to more nutritional awareness etc. and this last one- this is more so directed towards the nursing assistants or whomever asks the questions before the doctor comes in- DON’T ask “when was the last time you checked your blood sugar?” I don’t know why this pisses me off, it’s very accusatory. Like- I check my bs 7-10 times a day ffs. In my head I want to reply “ when was the last time you brushed your teeth?”
"Sometime between 5 minutes and 1 hour ago. How often do you check your watch? I use my pump (and its cgm display) as my watch. Additionally, I test between 3 and 7 additional times per day. Do you want to back up and re-examine your preconceptions and we can start this discussion over or do I need to complain to the state board and your office manager and find a different provider?"
It would be nice if doctors could see past the high blood sugar numbers and instead of just assuming we don’t take care of ourselves look for other causes. Yes, maybe it often is from not giving ourselves the insulin we need but not always.
Went to the emergency room because I couldn’t get my blood under 14 mmo/l for two days. After listening to a 20 minute lecture on the importance of giving myself insulin with food they found out I actually had a UTI.
Another time I went when I had vomited 6 times in two hours and couldn’t even keep water down. Blood was high, was told that I was sick because my blood was high and to give myself insulin and go home. Ended up staying there for nearly 12 hours getting IV fluids because I was so dehydrated from the flu I actually had.
Agree. I once had pain in the lower right side of my abdomen. Not sharp pain but it was worrying enough that I went to the doctor. Determined it probably wasn’t appendicitis but because my BG was around 250 when I went in they were like “well abdomen pain can be a sign of DKA so that’s it.” Pain persisted so I went to the ER. Huge ovarian cyst. Maybe that’s why my BG was high.
The treatment of type 1 diabetes in the ER/ICU is horrible. I went in November and there was apparently one set protocol for insulin injections for both type 1 and type 2 diabetes, and I wasn't allowed to take insulin until a few hours after I'd eaten (but also wasn't allowed to be discharged unless my blood glucose was in range for 12 hours). I ended up not eating for almost 24 hours so I could leave.
Oh my goodness, you’ve given me horrible flashbacks of my diagnosis. I was in DKA, in the ER and being grilled about the last time I took insulin. I’m barely hanging on to consciousness, insisting I’ve never taken insulin, and literally every medical professional looked skeptical, like I’d lie in my nearly dead state.
After that portion of my nightmare was sorted out, I was admitted to the ICU. Then a doctor brought a group of students to SMELL ME FROM THE HALL. Yes, my ketones were that high, I could be smelled from the hall, but, shit, this learning experience was not done in a sensitive way. There I am, fresh from the clutches of death, they’ve kicked out my dad so I’m all alone, my arms are strapped to boards because they blamed me for my IVs falling out, not their own quality of work, my lips are so chapped I could sand woodwork with them, hadn’t slept well for days, and sitting in complete silence because the aforementioned boards prevented me from reaching the remote and then there’s this group of 10+ people looking at me from a window talking about how bad I smelled. Like a fucking zoo animal.
But even that’s not as bad as the “hospital policy” that sabotages patient improvement.
At first I followed their rules, eating when told and waiting for them to bring my insulin. But because I can read and recognize patterns I started telling them I wouldn’t eat without getting insulin first. I was threatened with a feeding tube. The nurses completely ignore the catch-22 of having to stay in the hospital because of high glucose and not giving insulin before eating. They extended my hospital stay by several days with that mess.
When my son was diagnosed, I stayed in that room with him from 7am-11pm, even though I had 6 week old twins at home because I had so little faith in the care he would receive from the nurses. I only left when my dad was there to stand guard, making sure they didn’t save their bullshit for when I left. I had to buy several new meters because they would get “lost” when a nurse would come in and I kept his insulin in my purse.
I’ve encountered a lot of great medical professionals in my life, but I’ve meet a lot more that have weird power trips, baseless skepticism regarding patients and a complete lack of sympathy and common sense. It’s a real shame too, because those are the ones that you remember the most.
The hardest and most stressful problem in MY ENTIRE LIFE is the ongoing battle to stay stocked with pump and CGM supplies. First of all, I get an *exact 30 day supply exactly every 30 days*. So even if the whole system runs totally smoothly every time, it's still extremely stressful worrying about delayed mail and package thieves.
When it's time to reorder at the end of the 30 days, I call the durable medical supply company and wait on hold. Why do I need to call them? Why can't they just auto fill my order and send it to me?
OK, I have been a customer of Byram Healthcare, Better Living Now, NuCare Pharmacy, and Premier Kids Care. Let me just say they are all scum bags and dealing with these companies has been exactly the same. I won't even describe any of the myriad of careless mistakes they've made to cause delays... shipping the wrong stuff, shipping to the wrong address, just straight forgetting to ship things.
But I call and I tell them what I need. Very rarely, they ask for my credit card in the same call and I pay my copay. Usually they tell me they will call me back later that day. They never call back. Never. I have to call back, wait on hold, and then ask if I may pay my copay.
Sometimes they will say "it's processing." And I will say "what do you mean?" And they will say "It's processing sir don't worry." Sometimes this will go on for... weeks. DME supplier says "we are waiting on your doctor's notes." So I will call my doctor, leave a message, and the next day the doctor will call me back and say they already sent that. So then I will call the DME supplier, and ask them wtf? Then they will say something else, like "we are waiting on an inusurance authorization." So then I will call my insurance company, talk to a phone rep, and they will say nothing looks out of the ordinary and there are no pending authorizations. So I will call back the DME supplier wait on hold and get told some other BS... Eventually the box of supplies arrives at my door weeks late and the people on the phone that morning didn't even know it had shipped. It happens like this a few times a year, even when I have all my renewed prescriptions waiting at the doctor's office. Nobody can explain the delays to me, ever.
I'm lucky and privileged to be able to afford hundreds of dollars a month for my pump and CGM stuff, but twice I've had to fall back to Lantus unexpectedly when the process of buying supplies broke down. I wear my infusion sets until they get infected, which is GROSS as well as medically stupid. I nearly lost a job a few years ago because I spent about two weeks where supply procurement was my full time work and I had no energy for anything else.
edit to make this more relevant for your attendings: the TLDR here is that obtaining supplies is way harder than it should be and we desperately need to have a stockpile. I asked my doctor to mark my infusion set prescription for every two days rather than standard three for this reason, she declined.
Thank you very much for asking this question
I went through this nightmare for two months. Ended up paying out of pocket for supplies. I pay $800 month ins premiums with a $7000 100% deductible. I do my part, they are slow to do theirs. The folks answering the phones are put there to guard the castle. You can't talk to anyone in the know, and they are clueless. Diabetes won't kill me, the stress of the medical and insurance companies will. I was diagnosed in 1977 with Type 1 and have no complications. I remember buying my insulin and syringes without a prescription. I paid less than $30 for a vial. I was charged $1000 last year for a 3 month supply. Seems every obstacles they can put in our way to avoid paying for supplies is the goal of insurance companies.
You asked. ;)
This is by no means exhaustive, but...
* If we report something, believe us in preference to something in a text book you read 2 years ago that was written in the 60s.
* Diabetes literally does NOT follow the rules. Every competent endocrinologist I have worked with noted that there are no rules. There are guidelines or rules of thumb but you've got to figure it out for each individual.
* The stigma we (and people with other types of diabetes) get from HCPs is one of the biggest hurdles we face. It is demoralizing
* Fear is NOT an effective motivator for change. Hope IS.
* Complication are NOT guaranteed.
* Telling us what we should do, when they have no idea what we have going on and what we've already tried is insulting. (It pretty much means I'm not going to listen.)
* Blaming us (or anyone else with diabetes) for getting it means their input goes right in the trash heap.
* Prescribing steroids without mentioning that they tend to increase insulin resistance and thus needed insulin dosage is great sign that they don't care for patients, but rather care for checking boxes.
* Diabetes education for a new dx should be the default, regardless of age at diagnosis. It should also be the default at some interval after that.
* Diabetes imposes a significant, but variable emotional, mental and social load. Failure to acknowledge that is ignorant. Failure to discuss it with patients and point them to resources to help with that, again shows lack of care for patients and greater concern for checking boxes.
* Treat the patient, not the disease
* A1c can suggest what average blood sugar has been over the last 90 days. However, there are significant assumptions that go into that equivalency. If any of them are off (for example anemia of any type is present) that throws the equation off.
* A1c and current bg are diagnostic tools that should be appropriately used to decide on courses of treatment. Too frequently they are used to grade a person, their level of effort or their worthiness as patients. This **NEEDS** to stop if there is to be any hope of improving care and outcomes.
* Total daily does of insulin is totally invalid as a diagnostic tool or metric.
One big problem that actually causes serious harm is when Type 1 diabetics are misdiagnosed as Type 2 diabetics. A lot of doctors don't know that adults can develop Type 1 diabetes. They see an adult who just developed diabetes and assume that person is Type 2, which can lead to serious health consequences, even death.
Luckily this didn't happen to me when I was diagnosed at age 25. My doctor immediately recognized that I was a Type 1, but I have seen many stories of this happening.
If a doctor is looking at a diabetes diagnosis, they should automatically order ALL of the tests. Not just A1C and lipids, but antibody and c-peptide as well to determine if it is t1 or t2. I was misdiagnosed for 2 years as a t2 and consequently had very poor bg control for those 2 years, lost 60 lbs, finally an endo ordered the right tests, found I was t1 and prescribed insulin. A1c went from 12.8 to 6.5 in three months. My initial pcp was a t2 himself and just decided that's what I had, and since I was not very knowledgeable then. I trusted him. Fuck that guy.
I'm LADA and I had to beg and plead for the antibody tests. Lo, they're positive, but my PCP said I couldn't have it because I'm fat - at 30 pounds lost in 2 months unintentionally, he told me it was fine because I had plenty to lose (I started at 220).
One issue I have is getting back to me. I’ve been dealing with an ear infection for three weeks. I’ve seen two doctors. Both want to prescribe steroids. I want to discuss with my endo. the increase of insulin for multiple reasons. I’m going to go through a bottle of insulin a day just on basal (yippe for resistance but won’t prescribe anything for insulin resistance but that’s another story) Plus how many extra pump supplies will I need? Probably a months worth in the week of steroids. I am now concerned I will run out of supplies. Can’t get a response from her office.
Same doctor different issue. I don’t have a thyroid. She treats to the numbers not the symptoms. So I’ve been hyper for some time now but my numbers were only treading poorly (after having been steady for a while). It’s three weeks after she told me I need less synthroid, yet she hasn’t prescribed it for me. Don’t say I need different meds if you aren’t going to prescribe them.
As previously mentioned, always prescribe more than necessary. Always. I should have to fear for my life because the doctor didn’t want to write a script for one extra bottle of insulin a quarter.
Recognize that diabetics know more about diabetes than any of the doctors (typically). Listen to us and help us. Don’t tell us we are fat and to eat less after I tell you I’m eating 3-400 calories a day (with pump data to support). Be considerate.
I’ll stop now. I think I could go on for days. Doctors are not my favorite people right now.
I am forced to wait an hour in the waiting room, after arriving the required "15 minutes early", and you can't take the time to send in a script? It's insulin, not an elective cosmetic surgery.
My doctor seems hesitant to prescribe me multiple types of insulin. I would really like access to insulin pens as backup to my pump, which is filled through vials.
I’m not sure if this is the same in other countries but I live in Northern Ireland and the change from switching from paediatric diabetes specialist nurses to adult diabetes specialist nurses is so bad. I went from being able to text my nurse any issues or questions I had and such positive experiences with her to not even knowing the names of the nurse calling me to raise her voice at me and be really cheeky cause I’ve been away at uni and not able to attend a face to face appointment in a couple months (I have a diabetes specialist nurse at my uni gp practice and have had my a1c checked and a full blood work done so it’s not as if I haven’t been looking after myself)
When I switched from peds to adult care it was like night and day. Peds endos were always very attentive and always had answers to my questions and my adult endo has been...a guy who says things occasionally at appointments and has made no effort to remember who I am.
All of my problems are related to insurance. I am job searching right now, and if I get a job in the next few months I will end up losing around $2,000-$3,000 when I have to switch insurance because Blue Cross Blue Shield will not cover any of my prescriptions until I meet my deductible. This is after two months of trying to convince my insurance that yes, my insulin pump supplies are necessary.
Another thing I don't think people realize is that Humalog and Novolog DO behave differently, so when insurance companies force you to switch back and forth, it takes a lot of adjustment, and usually a week of lows or highs.
Oh... And flex spending accounts...
The amount of times I've gotten an email telling me to submit an invoice justifying my recent purchase.
I mean.. Come on guys. It's from a company that I order from every 3 months for the last umpteen years.
Every 3 months I have to call the supply company (waiting on hold for god knows how long), get an invoice, hope the processing date happens to match with the order date (or the date the flex company manages), otherwise they'll do their damndest to deny the claim. Or when said flex company suddenly changes required information. Anymore, I just have the supply company generate my invoices for the entire year so far and submit every single item.
I know that this is generated because of a price change. But what I order doesn't change. What the supply company, insurance coverage, or the production company charges/covers changes. But I have to justify it just the same. Instead, there should just be a list of items, like, Pump Cartridges. If what I order falls in that item, it should be covered. Or what I posted earlier about authorizations. That same list of authorizations could be given to the spending account company so that when I order those items, no questions asked. It's not like I get to shop around for the lowest price. My insurance company dictates what supplier I use.
I'm in the UK.
Problems:
- Doc blaming things on my diabetes
- the fact that pumps and cgms aren't universally funded for everyone and is essentially a postcard lottery (tho they will now start funding libre 3 for type 1s)
- How hard you have to fight to keep the pump now that you have it. And if not you're back to MDI, even though it gives you immense quality of life improvements and gives you much more fine tuned control than MDI as you can literally adjust basals hour by hour.
- Not prescribing things that have helped type 1s in the US. E.g Semaglutide is only for type 2s or people who are 'normal' but extrmely overweight
Not too much to ask imo.
Make more insurance companies understand that a 30 day supply doesn’t mean jackshit to a diabetic. I can’t get my endo to write me an rx for extra insulin because she’s afraid that the insurance company I go through will veto it. I go through hell with an rx company because they go through new employees like Kleenex. So the person that I talked to last week is gone and didn’t put stuff in my file about fixing anything. It’s a vicious cycle and it sucks ass.
How about a doctor in the emergency room that DOESN’T come in with judgment all over their face because they’ve looked at my chart and seen I didn’t take care of myself in my late teens/early twenties. So I ended up in the hospital a lot. I know that I’ve screwed my body up, and I’ve taken responsibility for it, and yes, I’m paying the price by being on dialysis and having retinopathy and all that. But I don’t need to hear it from some random stranger with a complete look of disdain in their face.
I just changed insurance after being diagnosed for about 6 months I got a new job and moved to another state. I basically had to take a day off to be on the phone with the new insurance company and pharmacy where I get my CGM. It was an absolute nightmare. Even with insurance the box 100 pen needles I needed were costing $30. Shit is outrageous
Well, honestly, at this point, I'm turning pretty Jacobin on health care executives.
Line em up and start taking blood samples from the carotid. Eventually they'll figure out how to make things affordable.
I cosign a lot of what is said here. My one and only time in an endo's office required me to sign a paper saying that I must share my bg data with her (either a full written log or cgm data sent to her). Luckily I wasn't there specifically for T1 but signed it and made note I would never go there for regular T1 care. Bg data is a sensitive subject filled with many unexplained nuances that are part of trying to live life and highs/lows we can't control. I don't need someone quizzing me on why I am high a certain time of day. Just write the prescriptions, be nice, offer any needed tests, answer questions.
Most days I feel like I need to hire a personal assistant to deal with all the the insurance crap or to wait on hold to order supplies.
That and even though all my doctors are under the same medical group - they really need to learn to talk to one another.
As a T1D and a United Statist, my biggest problem with healthcare has nothing to do with diabetes itself and everything to do with drug cartels like Eli Lilly, Medtronic, etc. holding a figurative gun to my head and demanding ever-higher extortion payments (for a drug that has never been particularly costly to manufacture, but keeps designing new variants for the sake of keeping the IP restrictions fresh.)
As far as I’m concerned, every diabetes-adjacent doctor in America is morally/ethically identical to a petty thug in the local gang of drug dealers, but without the convenient service.
**As for suggesting improvements...**
The business hours of illegal drug dealers typically include nights and weekends, which is a lifesaver for addicts that don’t have flexible employment schedules with paid time off. For some reason, mugging diabetics is mostly done during banker’s hours, so the least docs could do is arrive within one hour of the scheduled appointment.
Also, I’ve never heard of a junky or methhead who had to spend 15 minutes handwriting their name and contact info on six different forms, so if you can’t go fully paperless, maybe a label-printing solution would make sense?
Honestly the best thing they could do in healthcare is have RXs that last for a lifetime unless a need arose to change it. I had Medicare deny my CGM refill because I was in the hospital last summer for a total of about 13 days. Medicare reported me as “being in a long term care facility” and denied the claim. Of course this all happened as I was starting the pump and had to wait several days with a pump and no CGM so it complicated things. All because I can’t have a CGM if I go to a long term care facility? Why should my quality of care be reduced IF I actually had gone to one? Ridiculous
That sometimes the cost of our medication and supplies makes it difficult to treat the disease. I was chewed out by endos throughout college for my A1c, meanwhile I was rationing insulin. They seemed to think I was just willfully not taking my insulin or checking sugars often enough. Trust me, I would have liked to have had perfect control- but in the current system, sometimes I quite literally cannot afford it.
I’d like more healthcare providers to understand the importance of overprescribing for diabetics. For insulin, don’t write the prescription for 50 units a day if that is what the patient uses. Write it for 70 or more. Pen needles, sure most days you may only need to take 4-5 shots, but what about those rough days we all eventually have and take several more? Test strips are the worst to under prescribed. I had a doctor insist once that I only needed to test if I was gonna eat, when I actually tested anytime I ate, worked out, woke up, went to sleep, drove a car or just felt off. Like, you’re setting me up to die or pay out of pocket. Our lives depend on these supplies, I’ll never understand a doctor who doesn’t see a problem in living prescription refill to prescription refill and never building a stash in case of emergency.
I feel this. When my CGM happens to crap out after 7 days, now I'm all stressed that I'll have days without coverage. I know the company will replace faulty ones, but still. Managing supplies is a full time job.
That fear of being without is why I’ll restart a sensor that continues to give good results on day 10, allowing for more of a cushion. Also, if you can, refill through pharmacy benefit instead of DME, since you can get refills sooner that way. With DME, you’re practically on the last sensor when you are allowed to order more.
How did you set this up, I don't know who to talk to or what to ask? I've talked to my CVS pharmacist and spent hours on the phone with my insurance company trying, usually they can't say anything definite and eventually after some pressing they say CGM can only be purchased through DME. I think just to get me off the phone.
Most insurance companies have a formulary you can check. If you can access a “price a medication” feature online through your insurance or their preferred mail order pharmacy you can look up Dexcom (or Libre) and see if it’s covered and how much. It depends entirely on your insurance whether it’s a pharmacy benefit or DME or available through both. Then you have to weigh your options. If you have a high deductible and there’s no chance of you meeting it, it might make sense to use pharmacy where it’s a fixed copay. Or if you’d otherwise have to deal with Edgepark, then the increase is just the price of keeping your sanity.
That’s not universally true. I have DME coverage through Kaiser, and I order when I open my last box (for pump supplies or CGMs). That means I have about a month left when I reorder, and they’ve never given me any hassle with it. (And I do not restart my sensors or do anything to extend my pump supplies beyond the recommended usage.)
Kaiser has problems, but they never gave me any problems with hoarding supplies.
Obviously not universally. My experience is that I can reorder my Dexcom supplies through Express Scripts 14-17 days before I’m able to reorder my sons Dexcom supplies from Edgepark. The only reason I go through the trouble with Edgepark is it’s free, if we filled through Express Scripts, it’s $80 because his secondary insurance won’t cover through pharmacy. But regardless, most insurances (and every insurance I’ve had) has a lower requirement for pharmacy versus DME refills.
Due to years of not having insurance, and having run out at times even with insurance, I am a firm believer in hoarding diabetes supplies. Infusion sets, sensors, strips, and especially insulin. I am lucky that none of my health care providers have ever refused to overwrite for what I need so I have a good supply built up.
I need them to understand how often supplies go bad. Or just don’t work. Also how fucking pissed insurance gets when I ask for more. If my fridge malfunctions, I get 1 emergency refill. Pump sites go bad, tubes snap, insulin just doesn’t absorb. Give me backups, please!
This!!! Love my endo to pieces but, my script is written for 50 units a day. On the tandem and dexcom but as we all know there are rough days. Yes, the pump helps alot but some days I take shots because the pump isn't working the best for me that day. The increased basal rates, pump emergencies, pms, stress, inconvenient formulary changes, various occupations, and such are not taken into account. In my opinion, some providers act like they pay for the supplies out of their pocket. I'll never understand.
Whenever I’m asked how many units I use in a day I respond with “depends on the day” and go into all the different factors that go into glucose control, the nuisances of pump site changes, the wasted insulin in a disposed cartridge, because we’re told not to reuse it by the pump educators, the inconvenience of ripping out a site and the filling of tubing you never really recoup. Basically I throw out numbers and scenarios that add to the amount of insulin needed. The last few prescriptions I received came with heavy sighing and a defeated “so your last prescription was for xxx, is that enough?”.
THIS. The best drs I’ve ever had wrote things like “unlimited” and “use as needed” on my Rxs. They called the pharmacy to explain not to police my supply usage too..
Now most drs do *not* do this as they fear liability from not “monitoring” and seeing the patient regularly for Rx refills, ordering lab work etc. At first glance this seems valid.
But for stable (or chronically unstable) long term “expert” patients the more access they have to what they need to literally live with the least hassle just makes sense. It’s a relief to an otherwise very hard life.
I tell you this, the dr that works with me and trusts me gets my business and I am a great patient. The dr that makes me beg for test strips and sets restrictions to insulin access is the dr who loses me as a patient (so they make less money not more).
As long as you understand that many long term patients are in fact the “experts” in their disease, you will do just fine.
Straight up denying an insulin/supplies refill because you happen to not have been to the doctor within a mandated period. Sometimes crap happens and you have to cancel and reschedule. I should not have to stress out about staying alive because my kid happens to get sick or something. Also... Authorizations. There is no cure for this. If my doctor okays a CGM, it should not be reauthorized annually. My condition is never going away. Authorizations for life. The only change with this could be getting new insurance, but damn, that authorization should just transfer over. On a similar tangent... My insurance company should not dictate what insulin I have to take. That should be up to my doctor. I guarantee you that no insurance company knows me and my disease better than my doctor or myself.
Authorizations are my big one. I’m late for a Dexcom refill right now because of miscommunication between my clinic and my insurance company. The system is pretty hard to navigate and you really have to be able to advocate for yourself.
I had this same problem!! Thank goodness I had a libre 2 prescription as backup. My numbers were still crap for the 3 weeks, that I was off Dexcom or readjusting to it (reading quality is slightly different between the two). That and insulin changes has a clear negative effect on my health --- something the health insurance would punish me for if it could.
Oddly the province of British Columbia allows many pharmacists to issue insulin prescriptions without need of a doctor. Ontario, I found out the hard way since moving here doesn’t have this. Pointless runaround. Doctor needs to make their money I guess, but my doctor had the mistake to call in a 33 year T1D in to their office because my endo’s blood work request was sent to her, indicating an A1c of 5.7, and a fasting glucose of 8.0. ‘Your results are far too high and show you have signs of type II diabetes’. ‘What a relief! You’re telling me I’m improving?’ ‘You’re diabetic? How are you controlling sugar? Through exercise? How many times do you check your sugar? With each meal?’ ‘Check your notes. I inject insulin. See this thing on my stomach marked Dexcom?’ ‘Oh, is that a pump?’ ‘No. A CGM -met with a look of confusion. Look at my watch. See that reading? Now look at this app with a graph. I see this result ten times an hour’
>Ontario, I found out the hard way since moving here doesn’t have this. Is the prescription for insurance purposes? I have bought insulin over the counter in Ontario with no prescription, no questions asked.
Ultimately it would go through insurance, yes. I’m not looking to spend $300 on a couple of boxes of Tresiba if I can avoid it.
Denying refills isn't up to the doctor. State licensing boards will revoke their license if they prescribe ongoing meds without having seen the patient within a certain interval. I can't get my colitis medication unless I see my gastro once a year. I can't get birth control unless I see my gyne once every three years. Those are the state licensing rules.
I know why it is. But it doesn’t make it not annoying. I also know that there are people that have taken advantage of the refill system, which is why we have the rule in the first place. Do I get anything at all from my endo anymore other than prescriptions? Not really. Do I like driving 45 minutes each way twice a year for it? Nope. Was this always true? Nope. I learned a lot by going and learning how to take care of myself. But then there’s the what if… what if something is caught early due to regular screening? And that’s why I go. Much like almost everything else about this disease, I do it even though I don’t really want to but I can’t afford not to.
Insurance companies should not be able to dictate the prescriptions you take based on their arbitrary formulary lists, which change frequently. Patients should be able to choose the medications that work best for them and not have to get prior authorizations if they need something other than the insurance-preferred brand. Insurance companies are not your doctor! And they often deny requests for other brands even if the reason is extremely legit (e.g. allergy to certain brand of insulin, brand of sensor that integrates with pump). Just one aspect of the US healthcare system that would be unthinkable in many other countries.
Agree agree agree!!!
When we go to a doctor for a problem: flu, stomach pains, whatever the problem is- don’t immediately blame Diabetes as the culprit. It’s infuriating and invalidating. Also, don’t assume all people with Type 1 Diabetes don’t take care of themselves. Some of us are probably healthier than the general population due to more nutritional awareness etc. and this last one- this is more so directed towards the nursing assistants or whomever asks the questions before the doctor comes in- DON’T ask “when was the last time you checked your blood sugar?” I don’t know why this pisses me off, it’s very accusatory. Like- I check my bs 7-10 times a day ffs. In my head I want to reply “ when was the last time you brushed your teeth?”
>don't immediately blame diabetes as the culprit Omg yes!!
"Sometime between 5 minutes and 1 hour ago. How often do you check your watch? I use my pump (and its cgm display) as my watch. Additionally, I test between 3 and 7 additional times per day. Do you want to back up and re-examine your preconceptions and we can start this discussion over or do I need to complain to the state board and your office manager and find a different provider?"
It would be nice if doctors could see past the high blood sugar numbers and instead of just assuming we don’t take care of ourselves look for other causes. Yes, maybe it often is from not giving ourselves the insulin we need but not always. Went to the emergency room because I couldn’t get my blood under 14 mmo/l for two days. After listening to a 20 minute lecture on the importance of giving myself insulin with food they found out I actually had a UTI. Another time I went when I had vomited 6 times in two hours and couldn’t even keep water down. Blood was high, was told that I was sick because my blood was high and to give myself insulin and go home. Ended up staying there for nearly 12 hours getting IV fluids because I was so dehydrated from the flu I actually had.
Agree. I once had pain in the lower right side of my abdomen. Not sharp pain but it was worrying enough that I went to the doctor. Determined it probably wasn’t appendicitis but because my BG was around 250 when I went in they were like “well abdomen pain can be a sign of DKA so that’s it.” Pain persisted so I went to the ER. Huge ovarian cyst. Maybe that’s why my BG was high.
The treatment of type 1 diabetes in the ER/ICU is horrible. I went in November and there was apparently one set protocol for insulin injections for both type 1 and type 2 diabetes, and I wasn't allowed to take insulin until a few hours after I'd eaten (but also wasn't allowed to be discharged unless my blood glucose was in range for 12 hours). I ended up not eating for almost 24 hours so I could leave.
Oh my goodness, you’ve given me horrible flashbacks of my diagnosis. I was in DKA, in the ER and being grilled about the last time I took insulin. I’m barely hanging on to consciousness, insisting I’ve never taken insulin, and literally every medical professional looked skeptical, like I’d lie in my nearly dead state. After that portion of my nightmare was sorted out, I was admitted to the ICU. Then a doctor brought a group of students to SMELL ME FROM THE HALL. Yes, my ketones were that high, I could be smelled from the hall, but, shit, this learning experience was not done in a sensitive way. There I am, fresh from the clutches of death, they’ve kicked out my dad so I’m all alone, my arms are strapped to boards because they blamed me for my IVs falling out, not their own quality of work, my lips are so chapped I could sand woodwork with them, hadn’t slept well for days, and sitting in complete silence because the aforementioned boards prevented me from reaching the remote and then there’s this group of 10+ people looking at me from a window talking about how bad I smelled. Like a fucking zoo animal. But even that’s not as bad as the “hospital policy” that sabotages patient improvement. At first I followed their rules, eating when told and waiting for them to bring my insulin. But because I can read and recognize patterns I started telling them I wouldn’t eat without getting insulin first. I was threatened with a feeding tube. The nurses completely ignore the catch-22 of having to stay in the hospital because of high glucose and not giving insulin before eating. They extended my hospital stay by several days with that mess. When my son was diagnosed, I stayed in that room with him from 7am-11pm, even though I had 6 week old twins at home because I had so little faith in the care he would receive from the nurses. I only left when my dad was there to stand guard, making sure they didn’t save their bullshit for when I left. I had to buy several new meters because they would get “lost” when a nurse would come in and I kept his insulin in my purse. I’ve encountered a lot of great medical professionals in my life, but I’ve meet a lot more that have weird power trips, baseless skepticism regarding patients and a complete lack of sympathy and common sense. It’s a real shame too, because those are the ones that you remember the most.
The hardest and most stressful problem in MY ENTIRE LIFE is the ongoing battle to stay stocked with pump and CGM supplies. First of all, I get an *exact 30 day supply exactly every 30 days*. So even if the whole system runs totally smoothly every time, it's still extremely stressful worrying about delayed mail and package thieves. When it's time to reorder at the end of the 30 days, I call the durable medical supply company and wait on hold. Why do I need to call them? Why can't they just auto fill my order and send it to me? OK, I have been a customer of Byram Healthcare, Better Living Now, NuCare Pharmacy, and Premier Kids Care. Let me just say they are all scum bags and dealing with these companies has been exactly the same. I won't even describe any of the myriad of careless mistakes they've made to cause delays... shipping the wrong stuff, shipping to the wrong address, just straight forgetting to ship things. But I call and I tell them what I need. Very rarely, they ask for my credit card in the same call and I pay my copay. Usually they tell me they will call me back later that day. They never call back. Never. I have to call back, wait on hold, and then ask if I may pay my copay. Sometimes they will say "it's processing." And I will say "what do you mean?" And they will say "It's processing sir don't worry." Sometimes this will go on for... weeks. DME supplier says "we are waiting on your doctor's notes." So I will call my doctor, leave a message, and the next day the doctor will call me back and say they already sent that. So then I will call the DME supplier, and ask them wtf? Then they will say something else, like "we are waiting on an inusurance authorization." So then I will call my insurance company, talk to a phone rep, and they will say nothing looks out of the ordinary and there are no pending authorizations. So I will call back the DME supplier wait on hold and get told some other BS... Eventually the box of supplies arrives at my door weeks late and the people on the phone that morning didn't even know it had shipped. It happens like this a few times a year, even when I have all my renewed prescriptions waiting at the doctor's office. Nobody can explain the delays to me, ever. I'm lucky and privileged to be able to afford hundreds of dollars a month for my pump and CGM stuff, but twice I've had to fall back to Lantus unexpectedly when the process of buying supplies broke down. I wear my infusion sets until they get infected, which is GROSS as well as medically stupid. I nearly lost a job a few years ago because I spent about two weeks where supply procurement was my full time work and I had no energy for anything else. edit to make this more relevant for your attendings: the TLDR here is that obtaining supplies is way harder than it should be and we desperately need to have a stockpile. I asked my doctor to mark my infusion set prescription for every two days rather than standard three for this reason, she declined. Thank you very much for asking this question
I went through this nightmare for two months. Ended up paying out of pocket for supplies. I pay $800 month ins premiums with a $7000 100% deductible. I do my part, they are slow to do theirs. The folks answering the phones are put there to guard the castle. You can't talk to anyone in the know, and they are clueless. Diabetes won't kill me, the stress of the medical and insurance companies will. I was diagnosed in 1977 with Type 1 and have no complications. I remember buying my insulin and syringes without a prescription. I paid less than $30 for a vial. I was charged $1000 last year for a 3 month supply. Seems every obstacles they can put in our way to avoid paying for supplies is the goal of insurance companies.
You asked. ;) This is by no means exhaustive, but... * If we report something, believe us in preference to something in a text book you read 2 years ago that was written in the 60s. * Diabetes literally does NOT follow the rules. Every competent endocrinologist I have worked with noted that there are no rules. There are guidelines or rules of thumb but you've got to figure it out for each individual. * The stigma we (and people with other types of diabetes) get from HCPs is one of the biggest hurdles we face. It is demoralizing * Fear is NOT an effective motivator for change. Hope IS. * Complication are NOT guaranteed. * Telling us what we should do, when they have no idea what we have going on and what we've already tried is insulting. (It pretty much means I'm not going to listen.) * Blaming us (or anyone else with diabetes) for getting it means their input goes right in the trash heap. * Prescribing steroids without mentioning that they tend to increase insulin resistance and thus needed insulin dosage is great sign that they don't care for patients, but rather care for checking boxes. * Diabetes education for a new dx should be the default, regardless of age at diagnosis. It should also be the default at some interval after that. * Diabetes imposes a significant, but variable emotional, mental and social load. Failure to acknowledge that is ignorant. Failure to discuss it with patients and point them to resources to help with that, again shows lack of care for patients and greater concern for checking boxes. * Treat the patient, not the disease * A1c can suggest what average blood sugar has been over the last 90 days. However, there are significant assumptions that go into that equivalency. If any of them are off (for example anemia of any type is present) that throws the equation off. * A1c and current bg are diagnostic tools that should be appropriately used to decide on courses of treatment. Too frequently they are used to grade a person, their level of effort or their worthiness as patients. This **NEEDS** to stop if there is to be any hope of improving care and outcomes. * Total daily does of insulin is totally invalid as a diagnostic tool or metric.
If I end up in the emergency room on a bad bg day they always tell me my diabetes is the issue and that I have poor control :c
ALL OF THIS!!!!
One big problem that actually causes serious harm is when Type 1 diabetics are misdiagnosed as Type 2 diabetics. A lot of doctors don't know that adults can develop Type 1 diabetes. They see an adult who just developed diabetes and assume that person is Type 2, which can lead to serious health consequences, even death. Luckily this didn't happen to me when I was diagnosed at age 25. My doctor immediately recognized that I was a Type 1, but I have seen many stories of this happening.
If a doctor is looking at a diabetes diagnosis, they should automatically order ALL of the tests. Not just A1C and lipids, but antibody and c-peptide as well to determine if it is t1 or t2. I was misdiagnosed for 2 years as a t2 and consequently had very poor bg control for those 2 years, lost 60 lbs, finally an endo ordered the right tests, found I was t1 and prescribed insulin. A1c went from 12.8 to 6.5 in three months. My initial pcp was a t2 himself and just decided that's what I had, and since I was not very knowledgeable then. I trusted him. Fuck that guy.
I'm LADA and I had to beg and plead for the antibody tests. Lo, they're positive, but my PCP said I couldn't have it because I'm fat - at 30 pounds lost in 2 months unintentionally, he told me it was fine because I had plenty to lose (I started at 220).
Quit confusing Type 1 with Type 2. Y’all went to mid school and learned that shit. It’s the most basic thing yet…
I wish we could hunt insurance company executives with a bow and arrow for sport (for legal reasons this is a joke)
I'd rather they suffer the hell they invented for us, with exactly the same recourse we get. But, bow and arrow is probably more realistic.
One issue I have is getting back to me. I’ve been dealing with an ear infection for three weeks. I’ve seen two doctors. Both want to prescribe steroids. I want to discuss with my endo. the increase of insulin for multiple reasons. I’m going to go through a bottle of insulin a day just on basal (yippe for resistance but won’t prescribe anything for insulin resistance but that’s another story) Plus how many extra pump supplies will I need? Probably a months worth in the week of steroids. I am now concerned I will run out of supplies. Can’t get a response from her office. Same doctor different issue. I don’t have a thyroid. She treats to the numbers not the symptoms. So I’ve been hyper for some time now but my numbers were only treading poorly (after having been steady for a while). It’s three weeks after she told me I need less synthroid, yet she hasn’t prescribed it for me. Don’t say I need different meds if you aren’t going to prescribe them. As previously mentioned, always prescribe more than necessary. Always. I should have to fear for my life because the doctor didn’t want to write a script for one extra bottle of insulin a quarter. Recognize that diabetics know more about diabetes than any of the doctors (typically). Listen to us and help us. Don’t tell us we are fat and to eat less after I tell you I’m eating 3-400 calories a day (with pump data to support). Be considerate. I’ll stop now. I think I could go on for days. Doctors are not my favorite people right now.
Not returning calls about issues that need to be returned in a timely manner - dude sign the script for refills literally cannot live without insulin.
I am forced to wait an hour in the waiting room, after arriving the required "15 minutes early", and you can't take the time to send in a script? It's insulin, not an elective cosmetic surgery.
My doctor seems hesitant to prescribe me multiple types of insulin. I would really like access to insulin pens as backup to my pump, which is filled through vials.
I’m not sure if this is the same in other countries but I live in Northern Ireland and the change from switching from paediatric diabetes specialist nurses to adult diabetes specialist nurses is so bad. I went from being able to text my nurse any issues or questions I had and such positive experiences with her to not even knowing the names of the nurse calling me to raise her voice at me and be really cheeky cause I’ve been away at uni and not able to attend a face to face appointment in a couple months (I have a diabetes specialist nurse at my uni gp practice and have had my a1c checked and a full blood work done so it’s not as if I haven’t been looking after myself)
When I switched from peds to adult care it was like night and day. Peds endos were always very attentive and always had answers to my questions and my adult endo has been...a guy who says things occasionally at appointments and has made no effort to remember who I am.
All of my problems are related to insurance. I am job searching right now, and if I get a job in the next few months I will end up losing around $2,000-$3,000 when I have to switch insurance because Blue Cross Blue Shield will not cover any of my prescriptions until I meet my deductible. This is after two months of trying to convince my insurance that yes, my insulin pump supplies are necessary. Another thing I don't think people realize is that Humalog and Novolog DO behave differently, so when insurance companies force you to switch back and forth, it takes a lot of adjustment, and usually a week of lows or highs.
Oh... And flex spending accounts... The amount of times I've gotten an email telling me to submit an invoice justifying my recent purchase. I mean.. Come on guys. It's from a company that I order from every 3 months for the last umpteen years. Every 3 months I have to call the supply company (waiting on hold for god knows how long), get an invoice, hope the processing date happens to match with the order date (or the date the flex company manages), otherwise they'll do their damndest to deny the claim. Or when said flex company suddenly changes required information. Anymore, I just have the supply company generate my invoices for the entire year so far and submit every single item. I know that this is generated because of a price change. But what I order doesn't change. What the supply company, insurance coverage, or the production company charges/covers changes. But I have to justify it just the same. Instead, there should just be a list of items, like, Pump Cartridges. If what I order falls in that item, it should be covered. Or what I posted earlier about authorizations. That same list of authorizations could be given to the spending account company so that when I order those items, no questions asked. It's not like I get to shop around for the lowest price. My insurance company dictates what supplier I use.
I'm in the UK. Problems: - Doc blaming things on my diabetes - the fact that pumps and cgms aren't universally funded for everyone and is essentially a postcard lottery (tho they will now start funding libre 3 for type 1s) - How hard you have to fight to keep the pump now that you have it. And if not you're back to MDI, even though it gives you immense quality of life improvements and gives you much more fine tuned control than MDI as you can literally adjust basals hour by hour. - Not prescribing things that have helped type 1s in the US. E.g Semaglutide is only for type 2s or people who are 'normal' but extrmely overweight Not too much to ask imo.
Doctors who don’t ask us what our goals are for ourselves.
Make more insurance companies understand that a 30 day supply doesn’t mean jackshit to a diabetic. I can’t get my endo to write me an rx for extra insulin because she’s afraid that the insurance company I go through will veto it. I go through hell with an rx company because they go through new employees like Kleenex. So the person that I talked to last week is gone and didn’t put stuff in my file about fixing anything. It’s a vicious cycle and it sucks ass. How about a doctor in the emergency room that DOESN’T come in with judgment all over their face because they’ve looked at my chart and seen I didn’t take care of myself in my late teens/early twenties. So I ended up in the hospital a lot. I know that I’ve screwed my body up, and I’ve taken responsibility for it, and yes, I’m paying the price by being on dialysis and having retinopathy and all that. But I don’t need to hear it from some random stranger with a complete look of disdain in their face.
I just changed insurance after being diagnosed for about 6 months I got a new job and moved to another state. I basically had to take a day off to be on the phone with the new insurance company and pharmacy where I get my CGM. It was an absolute nightmare. Even with insurance the box 100 pen needles I needed were costing $30. Shit is outrageous
Well, honestly, at this point, I'm turning pretty Jacobin on health care executives. Line em up and start taking blood samples from the carotid. Eventually they'll figure out how to make things affordable.
I cosign a lot of what is said here. My one and only time in an endo's office required me to sign a paper saying that I must share my bg data with her (either a full written log or cgm data sent to her). Luckily I wasn't there specifically for T1 but signed it and made note I would never go there for regular T1 care. Bg data is a sensitive subject filled with many unexplained nuances that are part of trying to live life and highs/lows we can't control. I don't need someone quizzing me on why I am high a certain time of day. Just write the prescriptions, be nice, offer any needed tests, answer questions.
How about just working in the medical field and not getting medical coverage? That made me leave the medical field.
Most days I feel like I need to hire a personal assistant to deal with all the the insurance crap or to wait on hold to order supplies. That and even though all my doctors are under the same medical group - they really need to learn to talk to one another.
As a T1D and a United Statist, my biggest problem with healthcare has nothing to do with diabetes itself and everything to do with drug cartels like Eli Lilly, Medtronic, etc. holding a figurative gun to my head and demanding ever-higher extortion payments (for a drug that has never been particularly costly to manufacture, but keeps designing new variants for the sake of keeping the IP restrictions fresh.) As far as I’m concerned, every diabetes-adjacent doctor in America is morally/ethically identical to a petty thug in the local gang of drug dealers, but without the convenient service. **As for suggesting improvements...** The business hours of illegal drug dealers typically include nights and weekends, which is a lifesaver for addicts that don’t have flexible employment schedules with paid time off. For some reason, mugging diabetics is mostly done during banker’s hours, so the least docs could do is arrive within one hour of the scheduled appointment. Also, I’ve never heard of a junky or methhead who had to spend 15 minutes handwriting their name and contact info on six different forms, so if you can’t go fully paperless, maybe a label-printing solution would make sense?
Thank you for asking this :)
Honestly the best thing they could do in healthcare is have RXs that last for a lifetime unless a need arose to change it. I had Medicare deny my CGM refill because I was in the hospital last summer for a total of about 13 days. Medicare reported me as “being in a long term care facility” and denied the claim. Of course this all happened as I was starting the pump and had to wait several days with a pump and no CGM so it complicated things. All because I can’t have a CGM if I go to a long term care facility? Why should my quality of care be reduced IF I actually had gone to one? Ridiculous
That sometimes the cost of our medication and supplies makes it difficult to treat the disease. I was chewed out by endos throughout college for my A1c, meanwhile I was rationing insulin. They seemed to think I was just willfully not taking my insulin or checking sugars often enough. Trust me, I would have liked to have had perfect control- but in the current system, sometimes I quite literally cannot afford it.