Deciding on Prose scleral lenses

[heyjude0701]

I may have posted this message in the wrong thread, so I am re-posting it here, with apologies in case you have seen it in the archive thread.

I see ballpark figures on the forum for scleral lenses for about $1200 and $2500. I am deciding whether to get PROSE scleral lenses. Here is my predicament: the process for making, fitting and training me how to use PROSE lenses at Weill Cornell in NY costs $10,000. My health insurance may cover 80% of the cost, but there is no guarantee that it will cover it at all. My insurance plan has no pre-authorization process, and I would not know how much, if any of it, would be covered until Weill Cornell bills them. But Weill Cornell won't bill them until I sign a contract with them that I will be responsible for the entire $10K if the insurance company doesn't pay. Weill Cornell says that my insurance company typically pays $7,000-$7,500 of the cost, but they cannot guarantee that the insurance company will pay.

So, I am not sure how to proceed. After seeing much lower costs than 10K quoted in the forum archives, I am wondering if Weill Cornell's charges are out of line and if I should look for a place that is less expensive. Are all PROSE lenses this expensive? Are there other kinds of scleral lenses I should investigate that may be less expensive?

Thanks for any suggestions!
Judy

[Rebecca Petris]

Ugh, that's a toughie.

I don't think the $10k is specific to the location - I think it's the same at most PROSE clinics.

Weill Cornell says that my insurance company typically pays $7,000-$7,500 of the cost, but they cannot guarantee that the insurance company will pay.

A suggestion... I would go back to WC and ask them:
- How many of their PROSE patients have had it paid by your insurance company and
- Of those, how many had an indication similar to yours. If, for example, they were all keratoconus patients, that gives you no indication at all whether they're going to cough up for dry eye (or whatever your specific situation is... sorry I have a short memory and didn't look it up just now ).

Other than that, my stubborn little linear brain, while attempting to briefly tone down its intense prejudices in favor of BFS/Boston and DrG, really struggles with how to make a rational flowchart out of this decision.
- If I can't get a guaranteed insurance payout and I can't afford $10k cash and I'm not a gambler, then I find the best I can in my budget, right?
- If I CAN afford $10k cash but would rather not spend it unnecessarily and don't like the incalculability of the insurance payout odds, I remind myself that even with $10k I am not guaranteed success, what box does that take me to next?
- etc.

As I said, ugh. I'm sorry. Hard call.

[heyjude0701]

Thanks Rebecca, and yes, it's a tough call. I will take your suggestion and ask what % of scleral lens approvals by my insurance company at Weill Cornell have been for severe dry eye. I know that they sent my insurance company a 72 page document on why I need these scleral lenses and the insurance company said that they won't look at it until they are billed by Weill Cornell because we have an indemnity plan. Judy

[Amyfloor]

I have been to Weill Cornell for consultation but winded up at BFS since Dr. Michele Lee did not take my insurance. If you would like, I can pm you with the details.

[heyjude0701]

Thanks Amyfloor, please PM me. I have United Health Care, and Weill Cornell and Dr Michelle Lee do take my insurance, and UHC has paid for scleral lenses for other patients of Dr Lee; they just can't confirm that it will pay for it for me until after they submit the bill. Judy

[Blinks]

Do you have a letter from your referring ophth stating there is a "medical necessity" for the lenses? I may be off base on this, but I think the protocol for payment may hinge 100% on those two little words. I sent you a PM. Have been waiting for PROSE authorization from my insurance company because mine requires a pre-authorization and it's my understanding the PROSE provider (in my case not WC) is required to accept the insurance payment as payment in full. In other words, the PROSE center cannot "balance bill" me for any difference. That said, most likely, each carrier is different but I bet there is a written protocol on that payment somewhere out there on the web. Try a Google or a Bing search on Medically Necessary, payment policy, corneal prosthetic devices, and your insurance carrier's name. Good luck!

[heyjude0701]

Thanks for your response, Blinks. W-C sent my insurer a 72 page document explaining why the PROSE scleral lenses are a medical necessity. As per Rebecca's recommendation, I called W-C to ask what % of their PROSE acceptances by my insurance company have been for dry eye patients, and they said most of them are for chronic dry eye that has not responded to other treatments. They said my ins co has not rejected a claim for payment for PROSE lenses for any dry eye patients at W-C. So I went ahead and signed the agreement and have an appointment next Tuesday.

[Rebecca Petris]

Judy, I'm glad... and at the same time will be on tenderhooks for you. Here's hoping all goes very, very, very well!!!!

[heyjude0701]

Thanks, Rebecca!
Judy

[Blinks]

Good luck with your PROSE appointments on Tuesday. Hope you'll find relief with the devices.
Sending all ***good energy*** for smooth sailing with the ins coverage.
Hope you'll post and let us know how it goes.

[PotatoCakes]

USC told me to expect a cost of $12k.

If you do decide to jump, it is possible to petition (not sure if that's the right word) the insurance company to pay. I don't know exactly what the process is but you'll want to talk to your current doctor to find out if he/she is willing to support you in your efforts. Sometimes a strongly worded letter is sufficient. Sometimes they need to make a couple of phone calls. I know someone that did this (with another medical issue) and was successful after multiple denials from the insurance company.

My insurance paid a small fraction since USC is out of network. I found USC to be very helpful and knowledgable about the entire process. You might ask if there is someone at the clinic that can help you navigate the system.

[heyjude0701]

PotatoCakes, so far it seems that the Prose people at Weill Cornell will get the ins co to pay. I had asked them in the beginning what would happen if I went ahead and agreed to pay for the procedure myself and then put in a claim to my ins co so we could start immediately and I wouldn't have to wait the month for the pre-determination procedure. They said that I could do that if I wanted to, but W-C would be more likely to be able to get approval from the ins co then I would be. They are nearly certain that the ins co will pay; the only issue is that they can't guarantee it 100%. They sent the ins co 72 pages of documentation explaining why this procedure is a medical necessity for me. This being the case, I think they would send more documentation and a strongly worded letter if the ins co declines the claim. Judy

[miki-mama]

Other than that, my stubborn little linear brain, while attempting to briefly tone down its intense prejudices in favor of BFS/Boston and DrG, really struggles with how to make a rational flowchart out of this decision.

Hi, Rebecca.

I have one more question about the choice of providers for the scleral lenses. I know you are a big fan of both BFS and Dr. G. If you had to go to one today to get a new pair of lenses, who would you choose to go to? It sounds like Dr. G's method of fitting the lenses are more advanced and precise. Dr. G does not use trial lenses, possibly taking less overall fitting time. I have had several different "brands" of scleral lenses including an earlier version of BFS, and I need a new pair at the moment. I want to make the right decision. In your opinion, is one provider better suited for one type of issue than another? I am SJS patient. Before I heard about Dr. G at this forum, I would have gone to BFS. Do you think that Dr. G's use of OCT result in more precise fitting lenses compared to the trial and error method utilized by BFS?

Thanks!

[Rebecca Petris]

I know you are a big fan of both BFS and Dr. G. If you had to go to one today to get a new pair of lenses, who would you choose to go to?

Difficulty with answering that is, I can't compare an institution to an individual If I had to compare Lynette Johns who generally did most of my fitting in the past at BFS (she is no longer there) to DrG, and if the only thing to be considered was how confident I was that I could walk out the door ultimately with lenses that do everything I need them to do in terms of both vision and comfort, it would be a coin toss. I know so many BFS patients' stories (I sell plungers etc in my shop so I get to talk to people practically every day) that even though Lynette's no longer there, I don't really have any doubts that they have other fitters who would be able to do what I need. As for DrG he's a wizard. And, of course everybody everywhere has some patients they can't fix. Sigh.

I have had several different "brands" of scleral lenses including an earlier version of BFS

Curious how long ago the BFS lenses were? I've used PROSE since 2006 and boy have they changed in those years. Last ones I got were 4 or 5 years ago and I wouldn't be surprised if they've changed just as much since then too.

In your opinion, is one provider better suited for one type of issue than another? I am SJS patient. Before I heard about Dr. G at this forum, I would have gone to BFS.

That's a toughie. Can't answer really. Problem is I know so many more BFS patients than DrG patients - especially SJS and GvHD types. In the past my understanding was DrG considered the challenging visual situations more his bailiwig than dry eye but that may well be outdated.

Do you think that Dr. G's use of OCT result in more precise fitting lenses compared to the trial and error method utilized by BFS?

After shmoozing with post refractive patients for, what, almost 13 years now, I still put my confidence wholly in the drs fitting the lenses, not the technology - except of course to the extent that you can't separate them, I mean, good people choose and/or develop good technologies. Proof's in the pudding. Don't care what they use if it's working! In other words I'd go to these people no matter what they were using. "Back in the day" before all this OCT stuff, DrG solved a lot more of the hardest post refractive large GP fit challenges with his relatively "trial and error" method than others were doing with their fancy schmancy z wave and whatever other technologies were developing in those days.

Tough decision: where to go next. I guess maybe what I should have asked first is, what happened at all these other lens fittings you've had? What caused the lack of success? Discomfort, vision, wear time, difficulty getting a good fit, other? There might be a factor lurking somewhere that might help sort this out.

[L8rgator]

I don't really have anything to add about results - I agree with Rebecca. But I will say that for me one of the top 3 factors was price of follow up lenses. I lose things. I break things. And I like to buy spares of everything so I can keep them in cars and such. I was a little freaked out by the price of the BFS lenses after the first, and was afraid that if I broke it I'd probably not replace it just because of cost. From what I think I understand, when insurance covers these lenses they usually limit it - so spares and replacements aren't covered as often (???). And the BFS doctor said I'd want 2 on hand, and plan to replace them yearly on average (but they'd likely last much longer). Dr. G's spares and replacements are a few hundred dollars. So I can have a clear lens (for I plan to do alot of reading/close-up work, or want to wear my glasses), and a prescription for everything else. Plus a few other spares. Without feeling like I need to locked them in a safe like valuable jewelry. (I do put them high up in my medicine cabinet though so the cats won't lick the cases, knock over the solutions, and steal my plungers! )