I use a CPAP machine. I've had one for, I dunno, 12 years? It started out being owned by a company that leased it to my insurance company. Monthly. For most of the first 8 years. Then that machine started dying, and as I found out, the medical device company had gone out of business, and its assets were bought by another company. The original company was supposed to refill the consumable supplies. They didn't. All out of pocket.
Ok, so I called the new folks up with my prescription, because, you need a prescription to get a machine. They didn't have any available for the lease process, but I could buy one from them. So I got a nice ResMed Air Mini, which was an open box, and they programmed it for me. Cost me ~$950 +/- some. They said they would put me on their supply list, so I'd get updated bits at the appropriate intervals.
These are headsets, masks, tubing, filters, cleaning supplies. You know, consumable supplies.
I never once got those. I called them up and left messages a few times, but never a response to my inquiries. They did call me about 2 years later about payment for the machine (made in full on a credit card, eg. I've got the receipts). I got the distinct sense that they are scammers. They, in this case, meaning not just this one company, but maybe, I dunno, this whole complex of insurance cos to medical device suppliers.
When that unit started dying earlier this year, I bought another ResMed Air Mini. I can't say enough good things about it. Small and easily portable (other unit was large, unwieldly, and I usually had to fight the boarding folks when I brought it on airplanes. Turns out if you use a CPAP, you are considered "disabled" and can leverage the Americans with Disabilities Act allowing you to carry your breathing apparatus aboard, and it doesn't count as a carryon.
I'm not disabled, but I did carry it on. The Air Mini fits (easily) into my backpack, with 2 laptops, and my wires/chargers/notebooks, and other supplies. So less of an issue these days.
Back to my story.
Getting the prescription to the replacement medical device company was easy. I asked my doctor to fax it over. Yeah, fax. Today. I did ask about email, but apparantly there is some issue (I was told) that faxes are documents that can show a physician's signature and therefore legal instruments for prescriptions, and emails ... could not.
I didn't argue the idiocy of that point. If its real, we collectively, need to fix it. Maybe a blockchain for presriptions with signatures? I dunno.
Ok, back to my points.
Getting the prescription, that I wanted to fax to ResMed for the device (literally cutting out the dumb middleman) was ... well ... interesting. I asked my doctor to fax it to them. I called up ResMed a week later, and nothing. I asked the doctor again, and a nurse swore it would be done.
Nothing.
At this point, you may be thinking that this is a problem with this doctor/nurse. No. I'll explain in a moment. This appears to be standard operating procedure, delay, lie, obfuscate when a patient requests faxing to a place they don't like.
Overall, the process took about 1.5 months from initial request, until I told them I wanted a paper copy of my prescription, so I could do what I wanted. I was insistent, but polite. I kept bugging them. They finally gave in. I picked up my prescription copy, scanned it, and emailed it to ResMed. Who got me the new CPAP within 3 days.
So, this story is over, right?
No. I promised I'd explain that it wasn't the nurse/doctor.
My daughter had the same diagnosis this past summer. The doctor promised she could get a CPAP quickly, before she went to school in NY. This was July time frame.
I think you can see where this is going.
But first, CPAP enables you to get sleep if you have obstructive sleep apnea. Its an annoying condition, and if you snore all the time, chances are, you should get tested. Remember, I'm not a medical doctor, so I cannot and do not give medical advice.
Without good sleep, many things happen. You are tired and unable to concentrate. Your stomach hurts all the time. You have intense anxiety and mood swings. Your health declines.
As graduate school is very intense, I wanted her to have it before she left, or get it shortly thereafter. I promised her I could show her how to use/maintain it in a few minutes. I did, but this is for later in the story.
Remember, the patient (supposedly) comes first. Before profits. Before other issues. Which means, by default, you should do your best if you are a medical provider, physician, insurance company, or medical device provider, to get the patient what they need in a reasonable time frame.
August. We drove out to her school, got her set up. Stayed for 2 weeks as a backstop to make sure she was ok. No CPAP. No communication from CPAP folks, or from doctor on this.
September. I asked daughter to call her doctor and ask for a paper copy of the prescription. I pointed out that the various difficulties she was having were likely exacerbated by lack of the CPAP.
October, she visits, and doesn't prioritize visiting her doctor to pick up the prescription. She has all the symptoms that not getting a good night sleep gives. In graduate school. In a hard STEM field.
This is not good. I ask on each call with her to call/email her doc.
November, thanksgiving time frame. Still nothing. I try to push her on getting the prescription. Because the CPAP and doctor folks have gone incommunicado. Issues increasing in intensity.
December. She comes home. Other (stressful) things happen. She sends note to doctor insisting she pick up a paper copy of prescription. Doctor finally complies. We get a copy. I scan it. Email to ResMed with the order. 4 days later we have the CPAP.
4 days and 5 minutes later, she knows how to assemble it, adjust the head set, and use it.
1st night she gets better sleep. Mask issues, but she fixes them for second night. Third night was last night, and she stayed at a friends place celebrating the new year. Fell asleep without using CPAP. She's in her room sleeping now, with it.
Fucking A.
All this time wasted ... WASTED ... because people wanted to make sure they could make recurring revenue rather than take care of a patient. Who needed this. Badly.
This is a different doctor and nurse. Part of the same (large university hospital) medical group as mine.
I know, once is an accident, twice is coincidence, three or more times is enemy action. I've spoken with other colleagues and friends about this and similar things, and everyone to a person, reports how hard it is to get a physical copy of a prescription.
The medical device supply industry basically makes medical decisions for patients, even though they are not generally doctors. They are sales and marketing people. They make decisions that will maximize their profit at the expense of the patient and their insurance. Their insurance tolerates and enables this behavior. Again, they not doctors, and they do not have the patient's needs in mind. They have their bottom lines to protect.
They sit between patients and doctors.
Some will scream at this point "single payer would solve this". No it wouldn't, and it should be obvious why. The issue is that the patients needs are not front and center if they are not paying for the care. Doesn't matter if its one payer, or many. Moreover, single or multi payer when the payer is not the patient, can deny care that the patient would elect to have.
Basically the US system is rife with these middlemen. They inject themselves into the middle of processes and try to enforce a monopoly scenario. Remember how hard it was to get the damned prescription? Again, this is all about revenue flow maximization for all concerned, and nothing ... not a fucking thing ... about what is good and right for the patient.
The problem is that it is bloody hard to break free of the control of the middlemen. If, somehow, we were able to get legislation written to enable better patient control over these processes, the large device manufacturers and large insurers and large device supply organizations would lobby (read as "ply with dollars") our elected officials to water it down. So it isn't a threat to their business model.
Of course, other folks will bring up Canada or UK's health systems as examples of "good". As far as I can tell from speaking with friends in both places, "good" wouldn't be a word they would use to describe it. Maybe I'm wrong, and they are just stellar. Maybe not. I still recall hearing a horror story of a family denied care for a child on life support, with the NHS and hospital going to court to get the government to give them permission to withhold care. Again, for budgetary/outcome reasons. And there are horror stories running around now about how Canada's system is offering assisted suicide to depressed patients. Again, these may be false. I dunno.
The places that seem to have done a reasonable job are France, Switzerland, Israel, and a few others. I don't think the middlemen can exist in those legal regimes, the way the do here. Again, maybe I'm wrong. I don't know.
All I know is that getting the right thing done for my (adult) child seems to have been beyond these organizations capabilities, and it took me being a bull in a china shop to get shit done.
I try to do that rarely, as it tends to piss people off. But if its a choice between pissed off people and my loved one's care, I'll piss em off all fucking day long.
Now offspring has her CPAP. She's getting the care she needs in this regard. Though we are told that the medical device company, funded by the insurance company, might have a device ready ... March time frame.
I didn't ask which year.
Take home lessons. There's a real threat to our healthcare in the US in the form of the insurance-medical device supplier cartels. There's added threat to us in the form that our government is the best damned government lobbying money can buy.
I hope to god that this isn't like Churchill's aphorism on democracy. That being, "its the worst system, except for all the others." That is, it would be a real horror show if, despite all the obvious failings, this was the best of all possible systems.