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McCamy Taylor

(19,240 posts)
Wed Jul 16, 2014, 02:58 PM Jul 2014

Life Without CPAP: A Cautionary Tale About Public Healthcare Resource Rationing

Life Without CPAP is about a public hospital and clinic system that decided that sleep studies to detect sleep disorders such as obstructive sleep apnea and treatments for OSA such as CPAP were ineffective and too expensive. The money spent diagnosing and treating sleep disorders could be better spent elsewhere. And so, the administrators adopted a system wide policy. No county patient would get a sleep study. No one would get CPAP. Period. If anyone was in danger of dying from untreated OSA, they would be offered a tracheostomy—a surgical procedure in which a hole is cut in the throat and a tube in inserted in the airway. A permanent fix. And about as appropriate for most OSA as decapitation would be for migraine headaches.

The decision was a quiet one. There was no sign over the door of the hospital advising patients that if they had a sleep disorder, they should probably seek treatment elsewhere. The people being seen assumed that their health care providers would diagnose and treat their medical problems to the best of their ability. Since public awareness of sleep disorders is low, very few of them would have noticed if a sleep disorder was missed or not treated. They were grateful to be getting “free” health care that they otherwise could not afford.

This book is about the five years I spent working as a family physician with an interest in sleep disorders for a public health system that declared that sleep disorders did not exist—and if they did, we would not treat them. Sort of like Alice through the looking glass.

While the administrators’ intentions were good----allocate limited resources where they could be used most effectively---the results were not what they hoped. For sleep is an essential function of all higher animals, including humans. If you disrupt sleep, you disrupt the system of checks and balances that keep our bodies functioning in times of low stress. Sleep disorders tell the body, in effect, “You are living in a time of war. Mobilize all your defenses now. Live like there is no tomorrow.”

Do that long enough, and there may well be no tomorrow. Blood pressure goes up. Blood sugar goes up. The appetite goes up---have to put on pounds in preparation for that coming famine. Stress goes through the roof. So does paranoia. Can’t trust anyone. Pain levels rise, the body’s way of keeping you alert even when you don’t need to be alert. The libido falls. Don’t want to sire any children, not with all this danger looming. The elevated blood pressure and sugar take their toll on the arteries. Here comes that first heart attack at 3 am in the morning. That first stroke----

Now, add in unlimited medical resources to treat the results of that chronic sleep deprivation and what do you get? A lot of money spent chasing consequences when it might be cheaper and more effective to treat the underlying disease. But once folks in power make up their minds, it can very hard to persuade them to change their minds. If you know that sleep disorders are inconsequential and that the available treatments are ineffective, you will not see sleep disorders. You will see an epidemic of coronary artery disease and uncontrolled diabetes. You will allocate your resources towards the cardiology department. You will hire more clinical pharmacologists to get your patients’ blood sugars under control----

Never realizing that all that money is being thrown down an enormous sinkhole. For, if you fix the coronary arteries without fixing the underlying sleep apnea, the heart will quickly become diseased again. If you control the sugars without controlling the OSA, the patient will continue to put on weight. If you allow sleep deprived men and women to drive on the streets of your community, they put everyone at risk, and Everyone will be brought to your emergency room in an ambulance to be treated for their life threatening injuries.

What’s that you ask? What difference does it make to you, in your community, if people with sleep apnea in some other part of the country are not getting the treatment they need? Right now, at this very moment, around 8% of Americans over 40 all across the country have OSA and do not know it. But they sense that something is wrong. As more and more of them get insurance, they will seek out doctors, trying to figure out why their minds are no longer sharp, why their bodies seem to be falling apart, why they ache all over. They will visit doctors complaining of memory loss---and their new doctors will get expensive neurologic work ups. They will describe joint and muscle pains---and they will be checked for arthritic conditions and get MRIs of their spines, knees and shoulders. They will describe their panic attacks---and spends years in therapy, taking two, then three, then four medications, some of which will cause their weight to rocket up, making their underlying sleep disorder all that much worse. They will talk about the palpitations that wake them from sleep and get extensive cardiology evaluations. These tests will cost tens of thousands of dollars. They will see specialists and subspecialists. And, in 4 times out of 5, none of the doctors will guess what is really wrong with the patient, unless he happens to be hospitalized and unless a nurse happens to walk by in the middle of the night when he is snoring and she or he notices that the patient has frequent pauses in breathing and the nurse alerts the doctor and the doctor knows what the snoring and apneic spells mean.

Because, with the exception of pulmonologists (lung specialists), Ear Nose and Throat (ENT) specialists and a handful of Sleep Medicine Specialists, American doctors are extremely bad at diagnosing sleep disorders. So bad, that they miss 8 cases out 10. Meaning that unless something is done to bring physicians up to speed, they will waste a lot of valuable time and medical resources before their patients with OSA receive a correct diagnosis.

How much time and how much money?

Back in 1999, Kapur et al. calculated the excessive cost associated with undiagnosed OSA as $2700 versus $1,384 per year. In other words, in the year before doctors determined that someone was, in fact, suffering from sleep apnea, they did tests and treatment totaling twice what they would have done on the average person. Where did the money go? To work up chest pain. To treat uncontrolled diabetes and high blood pressure. To look for brain tumors and multiple sclerosis.

“Although the data are limited, the effect of sleep disorders, chronic sleep loss, and sleepiness on accident rates, performance deficits, and health care utilization on the American economy is significant. The high estimated costs to society of leaving the most prevalent sleep disorders untreated are far more than the costs that would be incurred by delivering adequate treatment.”

From Sleep Disorders and Sleep Deprivation: An Unmet Public Health Problem http://www.ncbi.nlm.nih.gov/books/NBK19958/

There is an epidemic of undiagnosed and untreated sleep disorders. It has a huge economic impact on our country. It affects road safety, work place safety. It leads to early disability and retirement, putting a strain on the Social Security fund and Medicare.

If we get universal healthcare without improving our primary care physicians’ ability to recognize and treat sleep disorders like sleep apnea, we risk wasting enormous sums of money the way that the health clinic I am about to describe wasted health care resources treating the effects of sleep apnea instead of addressing the underlying problem.

From the Introduction to Life Without CPAP, available free for five days at Amazon for Kindle (and other electronic readers) by McCamy Taylor. http://www.amazon.com/Life-Without-CPAP-Healthcare-Eliminated-ebook/dp/B00LS9K5GG/ref=sr_1_4?s=digital-text&ie=UTF8&qid=1405537020&sr=1-4&keywords=mccamy+taylor If you would like to read Life Without CPAP but do not have an electronic reader send me a message and I can send you a word document.
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Life Without CPAP: A Cautionary Tale About Public Healthcare Resource Rationing (Original Post) McCamy Taylor Jul 2014 OP
OMG. And you wrote this? Ilsa Jul 2014 #1
Thanks for raising awareness of this issue IronLionZion Jul 2014 #2
In early 1990s my insurance company denied a sleep study Gothmog Jul 2014 #3
I could use a CPAP with automatic pressure adjustment. No Vested Interest Jul 2014 #6
I had a script for a basic machine and the doctor sent me to a retail type supplier Gothmog Jul 2014 #11
I "failed" old CPAP---could not breathe out against all that pressure. My husband just McCamy Taylor Jul 2014 #17
The new machines are neat Gothmog Jul 2014 #21
I need to have the study done. Puzzledtraveller Jul 2014 #4
Do it now, GeorgeGist Jul 2014 #16
I've had a bi-pap for 5 years wyldwolf Jul 2014 #5
I don't know what I would do without my CPAP Hatchling Jul 2014 #7
I got one a couple of years ago Go Vols Jul 2014 #8
My BIPAP has made a world of difference for about 12 years now. hobbit709 Jul 2014 #9
I use one and feel so much more rested. I used vanlassie Jul 2014 #10
So many posters already saying what I planned to say. randome Jul 2014 #12
I am a sleep technician... rppper Jul 2014 #13
I was told for years I couldn't possibly have sleep apnea as I was a young woman REP Jul 2014 #14
Thanks for all the (on-topic) discussion McCamy Taylor Jul 2014 #15
K&R as you have uncovered the corporate death panel. Snarkoleptic Jul 2014 #18
Not a corporate death panel. A poor public health clinic trying to get by. Underfunded and McCamy Taylor Jul 2014 #20
A tip on how to stay on your side, kid's backpack stuffed with towels. McCamy Taylor Jul 2014 #19
Do you have any advice in finding a good OSA person? hootinholler Jul 2014 #22
Ask around. OSA is very common. More people have it than you realize McCamy Taylor Jul 2014 #23

Ilsa

(61,675 posts)
1. OMG. And you wrote this?
Wed Jul 16, 2014, 03:50 PM
Jul 2014

Is this just in one place, that particular clinic, or widespread? It wouldn't surprise me if it was widespread.

As long as medicine is about money, people won't get the best medicine they need.

IronLionZion

(45,256 posts)
2. Thanks for raising awareness of this issue
Wed Jul 16, 2014, 03:54 PM
Jul 2014

sleep apnea is often a root cause of lots of other serious problems.

Gothmog

(143,999 posts)
3. In early 1990s my insurance company denied a sleep study
Wed Jul 16, 2014, 04:36 PM
Jul 2014

This was back when we still had insurance regulators who cared about consumers. I ended up getting nasty and filing a complaint with Texas insurance commission that finally resolved issues. It was a mess.

Sleep apnea is a serious condition. I have a newer machine that automatically adjusts the pressure so that I never have to do another sleep study.

No Vested Interest

(5,156 posts)
6. I could use a CPAP with automatic pressure adjustment.
Wed Jul 16, 2014, 06:05 PM
Jul 2014

Did you have to have a physician prescribe it?

I've been using CPAP for over 10 yrs., after Primary care/internist prescribed the test.
Bought a smaller, more compact one online several yrs later - no prescription needed.
Shortly thereafter, I stopped going to the sleep disorder specialist, but have used CPAP nightly ever since the first recommendation. Probably 6-7 yrs now.

I'm thinking maybe this needs revisiting.
(Have other medical conditions - heart, pre-diabetes, weight and age issues, etc.)

Gothmog

(143,999 posts)
11. I had a script for a basic machine and the doctor sent me to a retail type supplier
Wed Jul 16, 2014, 07:03 PM
Jul 2014

A client of the firm runs a wholesale cpap business and I got the then top of the line for the same price for the basic model that does not self adjust. Once you have a script for any machine, you can get a better one.

If you are in the Houston area, PM and I will give you the name of my firm's client

McCamy Taylor

(19,240 posts)
17. I "failed" old CPAP---could not breathe out against all that pressure. My husband just
Thu Jul 17, 2014, 08:09 AM
Jul 2014

got diagnosed and his machine has BIPAP---the pressure goes down when he breathes out---and Auto-serv---if he does not breathe it gives him a little breath. LIke a Cadillac compared to my old Yugo. I asked my sleep specialist ten years ago why I couldn't have BIPAP and her answer was like "Just because." After seeing his machine, I am going in for another study and getting a new machine. I don't have any smoking lung disease but my airways are small and my peak flow has always been low like that of a child.

Gothmog

(143,999 posts)
21. The new machines are neat
Thu Jul 17, 2014, 09:15 AM
Jul 2014

I really like the new machines. The new machines have a chip that allows the doctor to see if the machine is working. The doctor takes the chip out of the machine and can get a printout of your compliance with the machine and pressures. The humidifier on the new machine is easier to use and makes a major difference. If I forget to fill the unit with distilled water and the machine runs out, I wake and now can refill the unit without opening my eyes

I do not understand the difference between a cpap and bipap.

I am very happy with my new unit. Be careful in that the doctor will refer you to a medical supply company who will in effect get you the machine at retail prices. I went to the company referred to my one of my partners and I got the wholesale price which was better. They do not take insurance but I had not met my deductible under the old pre-ACA policy and so had to pay for the machine in cash with both companies. For the same price quoted by the retail medical supply company for a basic machine, I got a self adjusting machine that appears to be still in use. The current price for my machine is $400 less than I paid.

I can not live without my machine. When I was without power following Hurricane Ike for 40 hours, I was about to buy a generator so that I could work the machine and then the power came on.

Good luck

Puzzledtraveller

(5,937 posts)
4. I need to have the study done.
Wed Jul 16, 2014, 04:40 PM
Jul 2014

Long overdue. I'm 41 and am being told I can't fool around about this anymore. I know I stop breathing several times a night. I can sleep 8 hours and it feels like 4, the problem is worse lately as I have only been getting about 5, so maybe I benefit from about half that. Severe allergies and a short palate exacerbate it greatly.

GeorgeGist

(25,294 posts)
16. Do it now,
Thu Jul 17, 2014, 07:27 AM
Jul 2014

I wasn't aware I had sleep apnea for many years. Once I was diagnosed and got a CPAP it was like I had a new life.

wyldwolf

(43,865 posts)
5. I've had a bi-pap for 5 years
Wed Jul 16, 2014, 04:44 PM
Jul 2014

It changed my life - although my ENT told me there's a minimally invasive laser procedure that is quite effective in most cases and cheaper than the constant replacement cycle of PAP machines and supplies. The name of the procedure escapes me now BUT insurance (at the time) was dragging their feet in approving it.

Hatchling

(2,323 posts)
7. I don't know what I would do without my CPAP
Wed Jul 16, 2014, 06:07 PM
Jul 2014

I used to think I had night terrors, waking up choking and and terrified. But once I got mine, I can't sleep without it now.

Go Vols

(5,902 posts)
8. I got one a couple of years ago
Wed Jul 16, 2014, 06:18 PM
Jul 2014

and it was the first time I can remember having a dream since the mid '80s.

vanlassie

(5,637 posts)
10. I use one and feel so much more rested. I used
Wed Jul 16, 2014, 06:46 PM
Jul 2014

to say i had to wake up to recover from my very poor sleep.

By the way, in my profession as a lactation consultant, it is becoming clear that failure to breastfeed puts infants at risk for future apnea problems in adulthood. This us because the breast applies pressure via the baby's tongue to widen the upper palate. Bottles cause a narrow oral structure.

 

randome

(34,845 posts)
12. So many posters already saying what I planned to say.
Wed Jul 16, 2014, 07:09 PM
Jul 2014

CPAP changed my life, too. Not having it available is a crime and I wish there was some way to sue the hospital.
[hr][font color="blue"][center]You should never stop having childhood dreams.[/center][/font][hr]

rppper

(2,952 posts)
13. I am a sleep technician...
Wed Jul 16, 2014, 07:29 PM
Jul 2014

Meaning I do overnight EEGs and PSGs for a neurology practice here in central Florida...if you have had a stroke or mini stroke, have diabetes, over 35, have had a heart attack, have high blood pressure, overweight or just have a thick neck, chances are pretty good you suffer from some type of OSA....please get checked if you're able. I've seen people stop breathing for up to 3 minutes and watched people's blood/O2 levels plummet into the 60-50% range in their sleep. Nose strips and dental dams don't work nearly as well as cpap, bipap or autosv machines.

REP

(21,691 posts)
14. I was told for years I couldn't possibly have sleep apnea as I was a young woman
Wed Jul 16, 2014, 09:40 PM
Jul 2014

Turns out I have severe mixed apnea (obstructive and central). My overnight O2 saturation was below 60% and I didn't get beyond Stage II sleep. The damage years of doctors refusing to treat me has done is serious and irreversible.

McCamy Taylor

(19,240 posts)
15. Thanks for all the (on-topic) discussion
Wed Jul 16, 2014, 10:03 PM
Jul 2014

I broke my own resolve and went back to a certain unnamed political site that has a huge Astroturf infestation. A particularly nasty strain of Astroturf that popped up when I blew the whistle on BCBS for selling crap bronze ACA policies with huge front end deductibles and very few local providers to chronically ill people immediately showed up to start trying to strangle the discussion as only the most virulent strain of Astroturf can.

That is one of the things I love about DU. No friggin' Astroturf.

Snarkoleptic

(5,995 posts)
18. K&R as you have uncovered the corporate death panel.
Thu Jul 17, 2014, 08:09 AM
Jul 2014

I've been using a CPAP for around 12-years and it's made a world of difference. At the time of my sleep study, it was estimated I was getting around 2 hours of sleep per night. I used to nod off in meetings, at red traffic lights, etc. The running joke was that I had a switch on my butt, which would cause my eyes to close.

McCamy Taylor

(19,240 posts)
20. Not a corporate death panel. A poor public health clinic trying to get by. Underfunded and
Thu Jul 17, 2014, 08:16 AM
Jul 2014

desperate for money and probably noticing how many people were getting CPAP machines and then NOT using them at a time when sleep research was beginning to make great strides (but how were they to know that?) so they said "Enough is enough! We can't keep paying $4000 for treatment people don't use."

McCamy Taylor

(19,240 posts)
19. A tip on how to stay on your side, kid's backpack stuffed with towels.
Thu Jul 17, 2014, 08:10 AM
Jul 2014

I wear the straps loose. I have a waterbed and could never stay on my side. Now, I never roll on my back. My oximetry (my husband has one) went from AHI 15 to 5 using just the backback. Amazing! Very comfortable, too and a lot cheaper than that $200 thing you can buy.

hootinholler

(26,449 posts)
22. Do you have any advice in finding a good OSA person?
Thu Jul 17, 2014, 12:20 PM
Jul 2014

I have a history of sleep apnea and also shortness of breath (apparently volumetric not exchange function) during mild exertion, which is getting worse as I age and my weight.

I'm having a hell of a time finding a general who is good and finding a sleep specialist.

Any clues as to how to go about finding someone good?

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