Insurance Cover For Operation

[james101]

Hi everyone..

Hope you are all ok and thanks for reading this message.

I basically have KC bad in right eye and have been told I need Cross Linking (procedure code C5130).

This costs about 2500-3000 K and apparently not currently being offered by NHS / do you all confirm this that NHS do not cover KC cross linking?

However I do have private medical cover with my work so have started exploring this area. .. and my worst fears have been confirmed and AVIVA are trying to weasel their way out by saying they will not cover this condition.

I was just wondering has anyone els had problems with insurance companys covering KC cross linking?

Thanks again for your help.

I need this done so I suppose I will have to get a loan on top of other loans to pay for it... doh triffic

[Anne Klepacz]

Hi James and welcome to the forum,
There are a few hospitals in the UK which now do crosslinking on the NHS. I don't know where you are in the country, but Liverpool is one, I think both Sheffield and Edinburgh do and Moorfields in London was negotiating with surrounding PCTs - not sure where the negotiations are at. Other people here may come up with more information. For CXL on the NHS, there would have to be definite evidence that the condition is progressing. You don't say how long you've had KC, whether you get reasonable correction with contact lenses, and whether it has been getting worse over time (for most people KC will stabilise eventually).
I was also recently talking to one of our members who did manage to persuade her health insurer to pay for CXL (she isn't with your insurer, and I'm afraid I don't remember who she is with). She told me they initially refused, but agreed when she referred them to the NICE guidelines on CXL which you'll find at www.nice.org.uk/IPG320
Hope this helps.
Anne

[james101]

Hi Anne..

Thank you kindly for your response. Very useful. I have forwarded guildlines to AVIVA who apparently are "reviewing my case" .. I am not holding my breath.

In answer to your question I have had KC for a long time now.. over 13 years I would say and for the first 6 years was examined regulary by Bath NHS eye hospital for any KC progression which remained stable around this period so the staff member eventually signed me out of her care saying "their are far more important people with far more serious conditions than you needing my attention"

The staff member had prescribed me glasses (I tryed contacts but never got on very well with them @ £60 a pop and I kept losing them) which I have been using up this present day. their was a time when I only needed the glasses for driving and computer work etc.. Now I need them all the time! by the way I no their are far worse people off than me here so for those people please ignor my moaning but its making me feel better.

So anyway a couple of years ago I went on a fly drive holiday to usa and it was here I noticed my vision had detoriated in my right eye. Left eye has KC but is not serious. The KC in right eye has continued to progress since then and have now been advised to have the cross linking.

I am currently also experiencing a dull aching in my right but dont no what this is. I have never had this feeling before.

If AVIVA blow me out I will try to explore your provided NHS options again VERY useful thankyou. but am worried I may encounter NHS long wait times with my condition worsening..

Like you said and "that person" who signed me off from NHS examinations eye hospital because my condition was stable over a period of time she assumed I suppose it was not going to get any worse but it has. Why is this Anne?

Do you have KC Anne?

Peace to you all and anyone taking the time to read this message.

James

[longhoc]

Hello James

I work in the insurance industry and while I can't speak for each and every policy written, can say that it would be pretty inconceivable for crosslinking to not be covered. The only things that might result in this happening would be because of a breach of fiduciary duty on the part of the policy holder e.g. non disclosure of pre-existing conditions or if it’s one of those policies which doesn’t actually cover treatment but only pays out for hospital stays – or similar.

As Anne rightly says, crosslinking is NIHCE-approved so that virtually guarantees your claim can’t be declined. In fact, any decision by an insurer is subject to a test of reasonableness, so even new or developing treatments can still be covered. A big subject for another post so I won’t go into it here.

The main step in the claims process where things usually go wrong for the claimant is when the provider gets notified of an intention to claim, but then can’t easily determine either the condition or the treatment or both. For the big general insurers, the usual practice is to run the claims line with non-medically qualified staff on the first touch point. You read out your diagnosis and the proposed treatment, they type it into a computer and out pops an “approve” or “reject” decision. You can probably spot the snag right there ! For common conditions and treatments, there’s not much to go wrong. So if you were to phone up saying "Osteoarthritis" indicates "Total hip replacement" the person on the phone would have heard of these, type something like the correct words in and obtain an approval decision. But get to something obscure (and Keratoconus is officially classed as a “rare disease”) then throw a treatment which has several variants in its naming convention and you can more-or-less guarantee it all going wrong.

Okay, you can spell K-e-r-a-t-o-c-o-n-u-s phonetically worse-case so that can at least convey that bit correctly. But more likely than not it’s not going to be on their system. And then the treatment, which I’ve seen described variously as “Corneal collagen crosslinking with riboflavin”, CXL, CCR, CCL, C3R, KXL etc. etc. etc. well, a snowball’s chance in a hot place getting them to find that one.

If the insurer really ends up getting confused, there’s a few ways of sorting it out. First off, you can ask the claim be referred to the underwriter. They are usually in possession of more detailed information and, to be frank, more understanding of what they are doing. Reading between the lines, I think that's what they are doing for you now. Wait and see what comes of it.

If still no joy, the best thing to do though, if you can, is to quote what is called the procedure code. Within the industry, this whole condition-indicated treatment-claim decisioning problem causes no end of head scratching. So a database of every procedure and the indicated conditions it can be applied to has been created which is supposedly common to both the insurance providers and the clinicians. If you can ask your consultant to let you have the procedure code for crosslinking then you can simply quote that at your provider. They can look that up and see that it’s indicated by Keratoconus, this should be covered and you’ll get the approval. The only issue is that – and here I’m speculating as I’ve only got limited experience to go by – I do have a suspicion that the medical professionals just hate having their knowledge and experience boiled down to simply throwing out a code number and don’t like the system at all. So the consultant or their practice admin people may claim not to know it. But hopefully I’m wrong and they’ll be happy to give this to you. If all else fails, I’ve got access to the procedure code data so can look this up (I used to know it from memory, alas middle age has set in..) – but I’d rather your consultant quoted it as I’ve a worry that there may be slightly different variations on the crosslinking theme and there may be more than one procedure code in play now.

Finally, some insurers are getting rather precious about having their own panel of “pre-approved” practitioners. While this is a laudable attempt to keep a cap on runaway fees, sometimes this leads the insurer to overstep the mark and make it difficult to use the clinic and/or the personnel you want. Don’t be fobbed off if you get this – you’re entitled to have the procedure done by who you want, provided they meet some industry-standard criteria.

If you continue to get grief, please do post again. I can advise you how to deal with a particularly recalcitrant provider. I don’t think that’ll be necessary here though. Sounds like they're putting your claim through their internal machinery from which a valid result should eventually emerge !

Good luck, with best wishes.

Chris

[Anne Klepacz]

Hi again James,
Do let us know what happens next. As for your KC being stable for 6 yrs and then starting to deteriorate, I don't know if there is any research into why KC can suddenly put on a spurt. There seem to be some general 'rules' for KC such as that mild KC which stays stable won't progress very far, KC that progresses very quickly right from the start is more likely to end up needing a graft, KC generally starts stabilising around the age of 40 when the cornea begins to age naturally and become thicker. But for every rule there are cases of KC that don't follow it! It's likely that there are several factors affecting KC, both genetic and environmental and that there may be 'triggers' that set KC off. But although there a lot of research into the condition, there's an awful lot that medics still don't know about it.
Yes, I do have KC although I was diagnosed 30 yrs ago when there were only a few options for the condition. I'd been wearing rigid contact lenses for some years for what I thought was just shortsightedness so it wasn't until I started getting blurry vision in lenses that KC was diagnosed by which time it was very advanced and I went quite quickly to having corneal transplants in both eyes. CXL didn't exist at that time and neither was there the wide range of contact lenses of various types which people with KC can now try. If you'd like more info, do PM or e-mail me your postal address anne@keratoconus-group.org.uk We have various booklets, DVDs etc that our postal mailing list members receive from us.
All the best
Anne
PS It's great to have your insurance expertise on this forum, Longhoc. Many thanks for sharing it with us!

[james101]

Thanks for your messages Chris and Anne

Its great that people take the time to help other people unconditionally. I think this is a very good thing and would like to see more of it in this world..

Anyway progress is insurance company have declined claim stating "cross linking is an unproven procedure"

However their is still hope as our insurance rep may be able to move us to an alternative insurer but rep said does not hold much hope as cross linking is not established enough.

So basically it would appear they want me to wait until I will need grafting.

Will keep you posted.

Thanks

James

[james101]

ME AGAIN!

Does anyone no of an insurance company that does cover this procedure please?

Thanks

James

[Anne Klepacz]

Hi James
The company that did cover CXL for one of our members was WPA, though I think she also had a backup letter recommending the treatment from her consultant, as well as sending them the NICE guidelines.
Anne

[longhoc]

Hi again James

<groan> this can be a right nusience can't it ?

Aviva subscribes to the CCSD code scheme. They even pubish a fee structure for this procedure ! If you're having to hand off the claim to an internal department via your employer, it means you can't easily deal with your provider directly. It's complicated enough making a not-common claim yourself. Having to do it via a third party is worse. I can't comment with any real accuracy on what the third party you're having to involve is doing, but it's HIGHLY quesionable that another provider would willing transfer you in and put you under their cover knowing knowing that you have a pre-existing condition for which you had an impending claim ! They'd almost certainly exclude the condition. Unless some sleight of hand is going on there... Anyhow, as I say, I can't comment without speculating.

In an ideal world it would be good if your consultant could provide a letter detailing what they are recommending clinically and why they believe it would allow you to Lead a Normal Life (a standard policy term for when you have something done and it more-or-less fixes the problem), that the condition is not classed as Chronic (i.e. it responds to the specific treatment they are recommending) and that for the purposes of loss minimisation (which you, your consultant and your insurer are obliged to take all reasonable steps to do) the C3R would likely reduce or remove altogether the possibility that you would need DALK or a full depth graft. But in the meantime, could either yourself or whoever is dealing with your company scheme request your insurer check their records under the CCSD Schedule of Procedures.

If they do, they'll find the following:

Fee Schedule
Eye and orbital contents
Cornea

Code
C5130

Description

Ultraviolet irradition of riboflavin for cross
linking of corneal collagen

Procedure

£ Units
192 16

Anaesthetic

£ Units
N/a N/a

... and please ask for a response in writing. ("C5130" is what I'm pretty sure the Procedure Code is). Say that you'd like an explanation as to why a procedure with a CCSD code is considered "unproven".

Happy to help more if you're willing to do battle with the beaurocracy !

Best wishes

Chris

[longhoc]

Just as a postscript to what I wrote above, was in a hurry so submitted the main info but left out an explanaiton of my reasoning, which I'll give here for the benefit of anyone following this sorry soap opera ! It's quite interesting and may be more widely useful to others.

When James was advised “cross linking is an unproven procedure” – well, that we can safely file under “complete misinformation”. Crosslinking is certainly not an unproven procedure. However, the full story from the insurer may have been something like “cross linking is an unproven procedure for the treatment of Keratoconus”. That would certainly be, by some measures, true. C3R for the treatment of Keratoconus is not yet FDA approved in the US as “safe and effective”. This is the “gold standard” in the industry for a combination of condition and treatment. For the big pharmaceutical companies, it’s the Holy Grail because it means that their treatment cannot be withheld from patients by an insurance provider. However, it’s not given lightly. It takes many, many years of clinical trials and follow ups. (C3R for Keratoconus has, I believe, completed the clinical trials; it’s in peer review or observation phase I think which could run for anything up to 2 more years). For those thinking at this point “What about NICE ?" (or NIHCE as I think they call themselves), I’ll come on to them later.

So, we’ve got a procedure which is indicated for Keratoconus patients but the safety and efficacy of which isn’t clear yet. As I say, the procedure itself is proven. What is an open question is whether it is reasonable to receive it (and for insurers to pay for it) for the treatment of Keratoconus.

Now we come to the crux of the matter. James’s consultant thinks it is going to be beneficial. In that, they are relaying the current best medical advice. The person most qualified to determine whether a procedure is warranted is the clinician dealing with the patient. Not the insurer ! If, once we can establish that the procedure itself isn’t unproven, it’s down to clinical opinion. If push comes to shove, I’d hope that James’s consultant will be willing to state that it is her or his opinion that the procedure is needed and it will be beneficial. The insurer could then, if they chose, challenge one clinical opinion by finding someone to give another, different, one.

Here, we get into the murky matter of financial impact. In order to mount a challenge to James’s consultant’s advice, the insurer would have to have a suitably qualified person provide a counter-argument. That sort of qualified person doesn’t come cheap. In reality, it will almost certainly be cheaper to settle the claim.

Unfortunately, to force this issue, it’s down to James’s willingness to keep going with it. Not right, maybe and not fair, perhaps. But that’s the way the world works alas.

I can’t leave this subject without mention of NIHCE. NIHCE is our copy of the FDA in the US. Primarily, it is trying to do the same thing (look at conditions, look at treatments, and provide consistent information about what is appropriate for the professionals to do in clinic). There’s one big difference. NIHCE also has a “Value for Money” agenda. The FDA is solely concerned with patient safety and clinical effectiveness. As for the implications of this additional criteria for NIHCE decision making, I’d better stay off my soapbox ... ! Luckily, they've given the nod to C3R for Keratoconus. One reason maybe is that it is cheaper to pay for C3R than it is for grafts so there's definitely some cost-avoidence which could have outweighed any safety/effectivenss concerns. This approval is still though of great help to anyone needing to make an insurance claim because it informs clinical opinion. Of course, you may have a bit of a ding-dong with the insurer to go through...