Insurance Cover For Operation

[Sallyabryant]

My claim for cxl was rejected by AXA/PPP as they 'do not provide benefit for treatment which has not been established as effective or which is experimental'

[longhoc]

Hi Sally

I always feel personally responsible for when insurance claims for Keratoconus treatment get rejected -- even if it's not my company involved !

For the procedures which are becoming the mainstay of Keratoconus management (Crosslinking and DALK or full depth transplants) there is a very good case for these being covered under most policies currently written. The case is stronger, somewhat perversely, for DALK or transplant. But there are still ample grounds for accepting a claim for Crosslinking. Most rejections seem to be on the “unproven” type of grounds. There is now a significant body of clinical opinion which supports the application of this procedure, but as the most comprehensive study that I’ve seen http://www.ncbi.nlm.nih.gov/pubmed/20398104 seems to point out, because of the inherent variability of Keratoconus as a condition, it’s rarity and the need to monitor any new treatment over a long-ish period, it will take a while before anyone can pronounce with certainty that Crosslinking is a sure-fire winner. And from what I can tell, in medicine, “certainty” is a relative concept. So it is probably unreasonable for an insurer to insist on waiting for when the day finalliy arrives that a definitive decision is made by the clinicians.

So, for those wishing to get their medical insurance policy to pay out for Crosslinking, there’s going to have to be a bit of a battle in most cases unfortunately. On the “plus” side, there’s an increasing weight of medical opinion which says that Crosslinking is indicated for Keratoconus in some patients. And then there’s the important NIHCE approval which Anne mentioned earlier. Set against that on the “minus” side is the continued lack of FDA “safe and effective” classification for Crosslinking.

Right, let’s get down to the regulatory framework. Insurance is incredibly – and I do mean incredibly – tightly regulated. Insurers must comply with a whole slew of policy design and implementation standards. Here’s the key high-level statement of the guiding principles for how policies must be written:

The Policy

Policies will define the terms they use – for example employment, unemployment, redundancy and disability.

The policy will make it clear whether the terms of the policy and the premium can be altered and with what notice.

The policy will make it clear that a change in the insured persons’ status could significantly alter entitlement to benefit.

The policy will define when the insured person will receive benefit. Any conditions relating to payment of benefits will be clearly displayed in marketing material and policy documentation.

Policy proceeds may affect claimants’ rights to state means-tested benefits. Insurers will ensure documentation distinguishes between cover against committed debt and cover supplementing income.

Insurers will set out clearly any variations or restrictions in cover for insured persons who are self-employed or on contract or part-time work. These terms will be clearly defined in the policy. Similarly, the effect of pre-existing medical conditions upon the extent of cover will be explained.

Insurers will treat contract workers as permanently employed if their contracts are renewed regularly. The policy will define such “permanent continuous employment” and this will be the basis of the contract.

Insurers will provide cover for complications arising from pregnancy, which are diagnosed as such by a doctor, or consultant, who specialises in obstetrics.

Where proportionate refunds are not provided upon cancellation of a policy, insurers will outline to policyholders how premium refunds will be calculated and give examples of the amounts, which may be provided.

Policy documents will provide information on complaints or arbitration procedures, which are open to insured persons.

In your case Sally, it looks like your provider didn’t adhere to the regulations. They failed in the following ways:

1) Terms were used – treatments must be “established as effective” and not deemed to be “experimental”. It’s okay for the insurer to use terms, but they must be defined. The insurer will need to say how they determine when a treatment is declared as “effective” and when it’s stopped being “experimental”. For policies written by UK providers, this is usually NIHCE or FDA approval. Crosslinking is not FDA approved but it is NIHCE approved. The insurer or the underwriter must tell you which criteria they apply. If it’s not FDA or NIHCE standards, the insurer must provide another qualified, objective standards body to govern their decision and they must state what this decision making authority is in the policy document.

2) You made a claim, the provider rejected the claim. You weren’t happy (presumably!) with that decision. The insurer is obliged under insurance regulations to advise you how to make a complaint and also to assist you with making a claim.

I know it can seem like an uphill struggle, but it really is worth persevering. The more people who do, the more the insurers will understand the need to assess treatments for Keratoconus more diligently. If you feel up to it, please do consider asking your insurer to review your claim again, this time treating it as a formal complaint, the subject of the complaint being a) that you weren’t assisted with making a claim, b) offered arbitration when a claim was rejected and c) the policy used terms which weren't defined.

Point c) is especially important if the insurer didn't make it clear in the origional policy documentation this clause applied (they can't later pop up with it when you make a claim; it must be suitably prominent in the origional documentation, because it would likely affect a consumer's decision to purchase the product).

Anyone else who has had problems with insurers covering Keratoconus treatment under a private medical cover policy, please do post. I’m collating a list of cases and looking for any common themes. So far, the coverage of the Crosslinking procedure seems to be a particular issue.

Best wishes to all

Chris

[Emma-Milton Keynes]

Hi.

I have also recently been diagnosed with KC and have been to see Mr Martin Leyland at Oxford John Radcliffe hospital. Mr Leyland recommended I undertake the CXL procedure.

My company provide me with Bupa private medical cover and as part of the authorisation process and contacted them to confirm whether they will cover this. They stated that if the procedure was covered under a clinical trial then they would fund the procedure, however if not then they would not pay for it. Moreover they strongly recommended against paying for it myself as should there be any complications or I need any additional treatment that the costs for this would also fall at my door. This is before I go into the time off work factor where I am not sure if I would be covered to take leave for this.

My eyesight is important to me and as my job is in the construction industry, I would have thought Bupa and my company would have taken a different approach. I am currently 28 and have had the symptoms for about 5 years. Considering i have been with my company for 8 years, their attitude is very poor.

Having read your response on the policy conditions inam going to have a read of mine at home tonight, but would appreciate any further advice on getting them to pay for the treatment. I had challenged the initial decision but it was certainly not formally handled nor was I given the opportunity for it to be.

It's very reassuring to have such an amount of people on here to offer so much help.

Regards,

Alistair Wilson

[Lynn White]

Chris,

I am interested by your various replies, as I was under the impression that private healthcare in the UK was implacably ranged against any prophylactic treatment of KC and indeed, will not even recognise medically necessary contact lenses. The latter is an oddity, as the NHS DOES recognise such an entity. Yet you imply that if a consultant is forceful enough, this could be accepted by an Insurance company?

As a professional who has fought for many years to try and get KC accepted as a acceptable condition under private health care and even as a condition to be registered as one related to Low Vision classification, I really do doubt any insurance company would pay out for any KC related treatment/management.

The NHS does not nationally accept CXL as a "proper" procedure, thus private health care does not either. This, as I see it it, is a purely business stand point, which is understandable. If the NHS will not accept it, why should they?

However, as I said, the NHS DOES accept the reality of medically necessary contact lenses but the private sector does not, unless one fights particularly ferociously.

As for CXL procedures being proven,I think you will find that NICE still feels CXL requires more "research", which is why it has not approved the procedure outright. Until it does, CXL will still be "esoteric" in the UK.

Lynn

[Anne Klepacz]

But we do have at least 2 members who have succeeded in getting their health insurance to pay for CXL - see the thread here 'CXL paid for WPA insurance' from Emmsie31. And a member who came to our conference last month had also had his CXL covered by private insurance. Plus all the expert advice provided by Longhoc on this forum. So it is possible!
Anne

[longhoc]

Hi !

Well, the maddening – but unfortunately accurate – answer is “it depends”. There’s three variables to consider:

1) The patient’s individual circumstances
2) The clinical opinion of patient need and justified treatment options
3) The policy’s specific T’s and C’s

Taking each in turn to explain what I mean, for 1) you could have patient Mr. A who has been diagnosed with Keratoconus for 20+ years, is happy to confirm in clinic that they manage well day-to-day with glasses or contact lenses and for whom their Pentacam’s remain pretty much unchanged year-on-year. Then you could have Miss B who is 25 years old, reports that they are contact lens intolerant and has shown to have a thinnest local reading of 475 microns, having lost 100 microns of corneal thickness in the past three years of which 50 microns is in the last year.

For 2), again taking my example cases above, typically, it would be hard to make a convincing case for treatment being customary and reasonable for Mr. A. But for lucky Miss. B there would be a very strong medical case for crosslinking to have shown curative intent rather than preventative aims. Further, all insurance providers and their policy holders have a duty to minimise the total cost of claims. Given that Miss. B presents a very real risk of hydrops developing, complications arising from continued contact lens wear and eventual progression to the point where a graft was seemingly unavoidable, the “do nothing” option (i.e. to withhold crosslinking) could reasonably be said (and would – crucially – indeed be said by an independent medical expert in the field of corneal disorders) to likely create higher potential claims loss than paying out for the crosslinking. Of course, there’s a whole load of grey area in between these two somewhat extreme examples. But that’s just the point – a single default response by an insurer would almost certainly be unreasonable. They would have to get the whole medical picture to make a judgement on. Often, alas, the first response you get when trying to make a claim lacks this rigour.

Finally for 3) this is where the fun really starts. Each policy is going to be worded differently and even policies from the same provider have differing criteria for benefits, shared responsibilities for costs, CCSD schedule rates etc. etc. It is a (intentional ??!!) minefield. For the cheap ‘n cheerful “cash plan” end of the market, you can probably forget it (crosslinking being covered at all or the benefit covering the costs). But for a policy which does provide some degree of treatment cover, the policy MUST (and I repeat it because it’s very important) MUST and WILL specify where a particular procedure crossed the “experimental” line. Picking a provider who I’ll let stay anonymous, here’s is an example from their policy document on this point:

(boring policy blub omitted)
Non-Established Treatment
Established treatment is treatment that is considered to be acceptable recognised clinical practice by XYZ Insurance Ltd's medical advisors (Chris: means “we get to decide”) and which falls into one or more (Chris: means “we accept a variety of criteria”) of the following categories:

■ It is approved by NICE for routine use in the NHS; (Chris: means “oh bugger, that’s probably out then for crosslinking but you’d have a case on the ‘routine use’ possibly although it is a bit of a long shot, but actually we don’t need to – see below”)

■ It is an established clinical practice in the UK, supported by peer reviewed published evidence of significant clinical benefit; (Chris: means “BINGO ! Well, maybe. You’d need to get supporting evidence from your clinician. But we’re probably at or near the tipping point now where corsslinking is ‘established’. And from what I can find, we're drowning in published evidence of the procedure's effectiveness. Certainly for Miss. B in my example you’d be hard pushed to find an expert in the field of corneal disorders who would say that it wasn’t established and had no evidence of clinical benefit”)

■ It involves the use of drugs that are licensed by EMEA for safe use for the stage of the condition being treated. (Chris: means “not applicable here because it relates to drugs, but interesting nonetheless as NICE is certainly not seen by this particular policy provider’s underwriters as the be-all and end-all”)

Now, that is the kind of policy you really want. At least you’ve got grounds for having the crosslinking procedure being covered, under the “established clinical practice” clause. There is though huge variation. If it is just the “NICE likes it” clause you’ve got in your policy document, that is much trickier. If that is the case, then the best advice I can give anyone in this situation is the get yourself on the NHS waiting list for crosslinking, then show your insurer the letter confirming that fact. The point of that exercise being that it is proof the NHS considers the crosslinking procedure “routine” for your degree of corneal impairment and/or progression history and/or age.

If anyone is struggling with an insurer or claim I’m happy to help out. I’ll need to know your provider and product name so I can check the exact T’s and C’s which apply – but I should be able to give you pointers on where to start appealing against a decision to decline your claim.

Looking wider and deeper, and risking a bit of a generalisation, I think we all (both for us patients and clinicians looking for legitimate reimbursement of their time and costs in treating our condition) get a raw deal from the insurance industry. There are of course honourable exceptions. But they are just that – exceptions. Regrettably our condition doesn’t lend itself to the Policy Holder: “Mr GP says I’ve got a wonky knee” Insurance Provider “we’ve got Mr. Jones in your area who does knees” Policy Holder “okay, line me up with Mr. Jones then” model. One of the things which this support group might like to consider is a group-representative approach to the insurers to see if we can lobby them collectively to improve their claims handling processes for Keratoconus. In the meantime, the larger a body of evidence I can collate from individual cases, the stronger a case I can build.

Things can – will – change for the better on this subject. We (policy holders seeking to have their provider cover crosslinking) have to put some effort into making that happen. It starts with challenging the no-brain default policy responses we typically receive. As you so rightly say Lynn, there's going to be an element of ferociously fighting our way through this. Not right or fair, but reality. So we're best off just getting on with it I think (sorry!)

For the patients amungst us specifically rather than the hapless professionals trying to get a functioning system in place, one more thing I’d like to leave everyone with. Certainly everyone who has any kind of private medical cover. It is this: Effective insurance isn’t cheap. It would be a good rainy day job to dig out your policy document (the full one, not the meaningless Key Facts pamphlet) and have a read. As you go through, ask yourself, envisaging all sorts of awful medical mishaps which might one day (hopefully not though) befall you – “would I really be happy with having to pay that?” or “would I really be okay with that not being covered” or “would I really not mind if I couldn’t see anyone other than who my insurer thinks I should see”. Challenge yourself that you’re not paying for cover which won’t when push comes to shove do what you want it to.

Best wishes all

Chris

[Lynn White]

Hi Anne

Its possible but not probable! As I said, the NHS easily accepts medically necessary contact lenses but the private sector does not. There is simply so much to do about educating "the system" about KC. We really cannot realistically fight every single case individually. There has to be an accepted system in place to deal with KC.

Longhoc, I could accept the Insurance companies argument about curative vs preventative if they simply acknowledged patients need CLs to actually see and therefore lead a normal life.. but they do not. They still insist CLs are "cosmetic" rather than a basic necessity. I can understand why... because once one embraces the concepts of KC, that opens a whole can of worms that leads to cost implications of payments out to claimants. So best not go there?

I know Ken Pullum has fought many a long hard battle with private insurance companies re scleral lenses and got nowhere. This situation somehow needs a co-ordinated plan.....

Lynn

[longhoc]

Hi Lynn

My comments were soley in the context of crosslinking (alongside related follow-on treatments such as INTACS or LASIK etc.) When it comes to contact lenses being covered that is a complete non-starter unfortunately.

The reason goes back to a fundamental principle of what insurance is. Legally, an insurance policy is a contract -- a special kind of contract with one primary purpose, which is this:

"To make the insured party whole after suffering a loss event"

(the language is somewhat archachic, but it is important)

For the contract to be performed, both parts of the above must be possible. The insured must be capable of being made "whole" withing the scope of the policy cover AND there must have been an "event" (note the singular form of the word -- it says "event" not "events") which triggered the contract being enforced.

Medical insurance is no different from any other form of insurance. It has to operate in the same way as all insurance. This means that the insured party must suffer an event (occurence of a disease process) which -- if a course of treatment is followed -- the end result must be that they are restored to their previous state of health.

The treatment must be capable of making the policy holder "whole". Palliatives, of which contact lenses, glassess or other devices such as false teeth are incapable of doing that.

Let me give a related example. Every medical policy ever written will have specific exclusions for prosthetic limbs. The reason isn't that providers have anything against those who have limb amputations. It is simply down to the incontravertable (however regrettable) fact the what's gone is gone and it isn't coming back. No artificial limb, no matter how well designed or innovative it is will make the patient "whole".

I wish I'd known that the wonderful Mr. Pullum and your good self had been trying so hard to get insurance providers to change their approach. It is unfortunately never going to be possible because what is being asked is a complete violation of extremely well established basic principles (insurance contracts and law is very well settled and it's in neither providers interests nor that of policy holders to introduce such radical change -- the law of unintended consequences would inevitably bite back and impact other areas).

It's not that I'm being "pro the industry" here. Far from it -- I think providers are unfairly behind the curve when it comes to claims for the newer procedures which do offer, at least by some definitions, a "cure".

Maybe best to concentrate efforts there rather than aspects which (contraversial statement follows!) shouldn't be meddled with.

That all said, I do understand why experts in the contact lens field (both yourself in the "soft" sphere and also those producing advanced sclerals) would read that with not a little frustration.

Best wishes

Chris.

[dalbeath]

Has anyone ever managed to get a claim through Pru Health? I called them 2 weeks ago before my CXL treatment and was told "No, we wont pay as there is no evidence that this treatment works!".

Thanks for all the info above, I'm going to call back on Monday and ask to speak a claims person as their web site says they follow CCSD procedure guidelines and then ask them why they won't pay. I think having a procedure code will help as I could not find one last time I called.

[Andrew MacLean]

I am not sure that Pru Health is wrong about this; the whole question of analysis of data for CXL remains a bit up in the air and hinges, in part, on the criteria for accepting patients.

It is known that the corneas of people over 40 tend to stiffen by themselves, so that the inclusion of any data for that part of the population is already problematic.

It is known that most people with keratoconus will never need more than glasses or contact lenses to correct their vision, so the inclusion of data that does not relate to people who have shown progression in their condition in the last 12 months is also problematic.

So, what happens when you strip out the data from these two groups? There's the rub. Much reporting does not include the information that would be necessary for the sort of analysis that the Pru seeks. This has been the problem in the United States and in England and Wales where NICE have also been trying to find some dependable basis on which to analyze the data produced by several clinics, each of which has a commercial interest in demonstrating that the procedure is effective as a treatment for keratoconus.