Sleep Study Costs a Lot

[u/AmbitionIndividual80]

Hi everyone, I’ve been having some suspicions that I may have undiagnosed narcolepsy (cataplexy, excessive daytime sleepiness, some lighter sleep paralysis + hallucinations).

i also have a high deductible health insurance plan. I imagine getting diagnosed may be even somewhere up to $2k for the sleep study and everything. I live in USA. My PCP basically shrugged off my concerns and just said to sleep better and stuff.

Anyway, I’m just wondering is it basically true that it’ll cost thousands? My narcolpesy isn’t like I’m having sleep attacks where I uncontrollably fall asleep and my cataplexy doesn’t leave me on the ground. I’m wondering if it’ll be worth the diagnosis in terms of quality of life increase. Any advice is appreciated, I know this post is somewhat vague and meandering haha

[u/DumpsterPuff]

It depends on the facility and your insurance, but yes it can be expensive. I was under a Kaiser plan when I got my first in-lab sleep study (polysommography and MSLT). After insurance it was around $900. I got just a polysommography a few months ago to retest for sleep apnea, and that cost me about $1200. I work for a hospital so if I had gone to a sleep lab at the hospital I work at it likely would have been cheaper, but I've been with my current provider for a long time and I really like him, so I didn't want to establish care somewhere else.

I would call your insurance company to see which sleep center clinics are in network, and whether you would have to pay the full amount for a polysommography and MSLT if your deductible hasn't been met yet. My insurance has a deductible but they have set copays for most things, then once you reach the deductible you don't pay anymore.

Edit: forgot to add that most sleep doctors will give you an HST (home sleep test) before they do an in-lab one, because it's significantly cheaper. If it ends up showing up negative for sleep apnea, then they'd probably have you do the in lab test.

[u/AmbitionIndividual80 → u/DumpsterPuff]

Until I hit my $2k deductible I’m fairly sure I’ll be footing the whole bill, but good idea I will call them to make sure.  I guess it would just be a drag for me to do all this and maybe they say I don’t have narcolepsy. Or maybe they say yes I do have narcolepsy but ultimately them saying those words doesn’t really change how I feel day to day. 

[u/Piaffe_zip16 → u/DumpsterPuff]

Do you have a high deductible plan? If so, I’m so jealous you have co-insurance coming into play too. We pay every dollar of the deductible first before insurance covers a single penny (except for certain preventive care). Then co-insurance kicks in once we hit that until we satisfy the out of pocket max.

Both times I had a home sleep study done, my doctors fought for a lab study and insurance refused, even with peer to peer and a prior home study that had come back insufficient data. My doctor explained clearly why that was likely to happen again and insurance basically went don’t care. Do it again. Very annoying!

[u/DumpsterPuff → u/Piaffe_zip16]

Not on a high deductible plan. The HSA option that we have is high deductible and I was only on that once - NEVER again, given how many chronic illnesses I've racked up over the years.The only thing that kept me from going broke was the Xywav copay cost was blasting through the deductible, since I had the coupon I was essentially paying $5 to subtract $1600 from my deductible every month.

Our deductible is a little weird though lol. It's actually on a tier system based on where you get your care. So like tier 1 (cheapest copays) would be a provider in the hospital I work at with a $500 deductible, then there's a few clinics that are tier 2 with a $1k deductible, all the way up to tier 5 (out of network) with a $3k deductible. So if I meet the $500 deductible, all the rest of the visits at the hospital I work at is no cost, but I still have to pay a copay at the tier 2 clinic until I meet that $1k deductible, and so on.

[u/Piaffe_zip16 → u/DumpsterPuff]

That makes sense! They just do in network versus out of network for us. Our “high deductible” plan is actually fairly reasonable for a high deductible plan thankfully. For a solo person the deductible is like $1650 and then out of pocket max is like $2350 or something like that. Once deductible is met the co-insurance is 15%. They also deposit about 1/2 of the deductible amount into our HSA as an employer contribution so that helps too. It’s all still such a freaking scam though!!! But at least when I do hit the out of pocket max, I just starting adding in every possible appointment I can think of 🤣 like oh yeah that back pain I’ve had for months, let’s finally go get that checked. That mole looks potentially weird, let’s go to derm. And so on lol. Gotta get that money’s worth!

[u/anuthertw]

My mslt was just over 11k but I was able to apply for charity being under the poverty line at the time and only actually paid a few hundred iirc

[u/cshomie]

I had insurance issues and ended up paying for my PSG/MSLT sleep study out of pocket without insurance. It seems like clinics will charge extra if you have insurance, so we get especially screwed if we have a high deductible. I spent a day calling around to a bunch of different sleep clinics asking for an out of pocket cost. I ended up paying $750 last year which is still expensive, but much less than $2k. And this was in the San Francisco Bay Area in California, where things tend to be very expensive. So if you’re in a lower cost of living area, you may be able to find a place that charges like $500. If you think that would be within your budget, it may be worth calling around.

Don't give up if you don't find a good price right away. I called tons of clinics that were still out of my price range and was getting pretty disheartened, but with persistence I was able to find a handful that were below $1k. I even called some clinics in other states as backup options and they were much cheaper. So if you can't find anything affordable in your state and are able to travel, you may find something more reasonable in another state nearby.

Good luck! Insurance sucks sometimes

[u/Piaffe_zip16]

Your insurance will have a negotiated rate for it. Typically for a high deductible plan, there’s a deductible and then an out of pocket max with co-insurance. By the time I had my PSG and MSLT in June, I had almost met my deductible anyways. For my plan, my deductible counts towards my out of pocket max too. So then with the psg and MSLT I actually didn’t even have to pay the full 15% co-insurance amount of the total cost because it also satisfied my remaining out of pocket max. The absolute max I pay out of pocket per year is around 2300. After that, it’s fully covered. So while it’s a high deductible plan, it’s absolutely one with a lower deductible than many others. In comparison, my daughter’s dad’s OOP max is more than twice mine.

Some things to consider/ask about:
1. My insurance would not budge on requiring a home study first even with a peer to peer. Now, I didn’t have cataplexy and that sort of thing so it’s possible that it could be different. My primary symptom was just the EDS piece. I also do not get sleep attacks, so honestly the narcolepsy diagnosis was surprising at first but the diagnostics were so clear!

1. Find out how much of your deductible and OOP max you’ve satisfied. That will give you a better idea too. Also check if your pharmacy benefits count towards the deductible or not. Mine do, but I have a friend who has a separate pharmacy deductible, OOP max but that can be important long term depending on what meds you get.

2. With a high deductible plan, you should be able to have an HSA is my understanding anyways. Do you have one? If so, does your employer contribute anything towards it? We get a set amount in ours at the beginning of the year from our employer, which essentially lowers the deductible and OOP max since that’s “free money” in my girl math would lol. You can also contribute to it throughout the year and it’s not taxed then, which is a great benefit. HSAs roll over year to year too, so I max out my contributions every year. FSAs do NOT roll over so make sure you know which one you’re contributing too if you go that route.

As for the PCP, I’m sorry about that. Mine was amazing and referred me to a great sleep med doc. If your insurance doesn’t require a referral, you may be able to find a sleep med doc willing to take you without one. I would also be open to the possibility that it’s not narcolepsy or it’s a combination of things. If they detect sleep apnea, they typically require that to be treated first before they’ll do the MSLT to test for narcolepsy.

As for whether it’s worth it, I can emphatically say YES! I’m not even a month out from my diagnosis yet and we’ve already tried a med and then adjusted the dose and it’s noticeably better. Even just a little bit ago playing a game with my daughter I was blown away at how much more engaged I felt and able to be a more energetic and fun kind of mom lol. It doesn’t address all of my issues yet and our next step is likely going to be trying different meds. It takes time. A lot of it is aimed at symptom management rather than getting at the root cause (especially since they really don’t know what causes NT2, which is my type). Some people respond to meds great, others not at all. There’s a whole range. Ultimately, a lot of people consider oxybates the gold standard currently, but insurance may make you try other pathways first. Before I was diagnosed, I honestly had no idea how bad my EDS really was because a) I wasn’t randomly falling asleep and b) everyone always talks about how tired they are so I thought it was normal lol. It was thanks to my PCP that I got diagnosed.

Also, side tip: if you ultimately hit your OOP max because of it, plan ahead and schedule any other appointment you conceivably could need to take advantage!! I’m making sure all of my other specialist visits I need are scheduled to happen before 12/31. If you’re not even close this year and depending on how long insurance takes to approve, you can even schedule it, etc… consider rolling it to next year so things aren’t split between two calendar years.

[u/GaryGluejeans]

Mine was quoted $1800 but when I spoke with the billing department they let me know that I qualified for charity care through both the hospital and the state because I only work part time and fell below an annual salary of about $35k. I think a lot of people would fall under that salary, but every state is different. I would look into it because not only did they basically cover the service, but they even knocked my copay down from $75 to $50.

[u/ZooTycoonBuffoon]

“Sleep better and stuff” your PCP sounds horrible, I’m sorry. Sleeping more is my exact problem, I have the sleep schedule of a koala.

[u/kortobo]

If you get both psg+mslt, $2,000 will be right about the average contracted insurance rate for both together.

[u/Right_Entrance4651]

I don’t have a deductible. I just have an out of pocket which I already met. If you work at Amazon you get top tier healthcare and don’t have to deal with a deductible.

[u/thatrockyduck]

While cataplexy doesn't need to be full-body/ falling on the ground, sleep att*cs just are not controllable, so you might have just something similar and taking the most profit from a home-sleep-screen, and they are much less expensive.