CXL paid for WPA medical insurance

[Emmsie31]

Hi guys

I just wanted to let you know that I recently had collagen cross linking done on my right eye in the UK and managed to get my insurance to pay for it. When I first enquired about I was told by my consultant that he wasn't aware of anybody successfully getting it paid for and all of his patients have had to pay for it themselves.
When I initially contacted WPA I was pretty sure they would turn me down as my keratoconus was a pre existing condition. They didn't even mention this, but said that they wouldn't pay as the proceedure is not NICE approved.
I called NICE and asked them how long they felt it would be before CXL became approved by NICE. They said that it won't be long, but although it is not approved they do have guidelines in place as the proceedure has been around a long time and for people with keratoconus it is the only available option for preventing progression. They said that in certain circumstances it is done on the NHS.
I went back to my insurance company and exlained this. They then said tha they would need info from my consultant regarding the thickness of my cornea and whether or not this really was the only option available to me. I suffered a hydrops last year on my left eye and I'm currently on the waiting list for a graft. My consultant told them that my right cornea could potentially go the same way as my left. He explained that the thickness of my right cornea meant that I could have the CXL, but if I waited any longer then I would be too thin.
Once he had provided the info and the thickness of my cornea my insurance company agreed to pay all the costs for the treatment. £2250! It felt like a lottery win.

I just wanted to share in case any one is in a similar position and may be able to get their insurance to pay. If I hadn't contacted NICE I would've ended up paying for the treatment myself.

If you need any more information, please do not hesitate to contact me.

Emma :0)

[longhoc]

Hi there Emma

Many thanks for your post ! One of the forum committee will probably come along soon with a proper welcome, but I just wanted to chip in and say well done for perseverence. What you ended up doing was demonstrating that an insurance policy cannot legitimately refuse to pay out for a procedure which is not "experimental" (and that so long as some governing body decrees it as such) an insurer is on dodgy ground saying it is. Also -- that this is probably more important -- all parties to an insurance ocntract are obliged to minimise lossed. Failing to pay out for Corssliking can -- depending on the patient's individual circumstances -- give rise to a greater cost falling due for a more complex procedure (e.g. a graft).

Thanks so much for letting everyone know that with the right approach, it is far from a lost cause getting the insurance provider to cover this procedure.

Best wishes from Chris

[itansey]

Hi, thats great news. I've asked my insurance provider BUPA about covering the procedure but they said no because its not NICE approved, which is a pain. If you have any tips as to getting this covered by them, can you let me know. When do NICE think it will be approved - within the next few months or will it be years?

Thanks,

Ian

[longhoc]

Hi Ian

Okay, the first thing to do is to ask your insurer to state the what EXACTLY in the policy's Terms and Conditions is preculding them from accepting the claim (this will almost certainly be "experiemental procedures" or somthing similar). It's a bit of a faff, but I'd do this in writing and ask for a written reply.

Once they've done that (if they've not already given you this information) you'll need to reply back asking how they determine "experimental". They'll probably say something about NICE approval. If they do, that's good news (really!) because the current state of play with NICE is that it's neither formally approved nor rejected; it's in imbo awaiting more clinical trails. So it cannot be said to be truly experimental.

Having got to that point, which is merely scene-setting, you need to get tough. Write back to the insurer saying that you are not satisifed with their decision because NICE hasn't yet reached a conclusion on the treatement. Make it clear that you are now asking for this matter to be treated as a formal complaint. It would help enourmously if you could get your consultant to write a letter advising that in their clinical judgement, the Crosslinking procedure would have a good probability of halting the progress of your condition for a significant period of time, if not indefinitely. If they could state the reason for their opinion, such as a significant body of clinical trails -- and their own observations -- even better. A further statement that continued progression of your Keratoconus may necessitate a more invasive procedure, such as DALK / graft / transplant, would be just the ticket. Please ask your consultant to confirm in writing how long they or the clinic you attend have been managing your condition -- the longer the better as it confers they are more knowledgable about you, your condition and the best treatment option than another expert opinion that the insurer may get an input from.

Send off all that, and wait for their reply.

If it's "Yes", great. Result !

If it's "No", then advise your insurer you will be making a complaint to the Ombudsman. At that point, if it comes to it, let me know and I can advise you how to take it from there.

Not going to be a quick win -- there's a bit of chasing around to do. But I'd encourage everyone to start mounting some challenges because it's only through that happening that much-needed change will come.

Best wishes,

Chris

[itansey]

Thanks Chris, this is really useful. I’m going to push BUPA on this matter…

[Emmsie31]

Hi guys

Sorry I've not got back to you sooner Ian, but Chris has done a fabulous job of explaining what to do! They way I got around it was to direct my insurance company to the NICE guidelines for the proceedure. This proceedure is available on the NHS if it is deemed the only option for the patient. Any operation available on the NHS should be availavle through insurance.

Good luck and let us know how you get on!
Emms

[itansey]

I’ve been in contact with BUPA about claiming the CXL procedure. At first they said it was an experimental treatment and wouldn’t cover the procedure, I then asked them to clarify what they meant by experimental. They came back to me by letter stating “CXL is not currently licensed for treatment within the UK and is presently undergoing clinical trials with NICE. When a treatment is undergoing trials its classified as experimental. When we consider benefits for treatment we are guided and instructed by the rulings of NICE. NICE guidelines state that you must be taking part in a clinical trial in order for us to consider providing benefit for this experimental treatment“.


According to other posters on this forum, BUPA’s understanding of the current NICE rules are incorrect as they have neither approved or disapproved the procedure….any help with my next course of action would be very helpful….

[longhoc]

Hi Ian

From what I can tell, you've made quite a bit of progess because now your insurance provider is shifting from the "it's not NICE approaved so it's not anything we can accept a claim for" to "it's undergoing trials, we consider trials to be confirmation that a procedure is experimental, we could possibly accept a claim if your procedure is performed as part of a trial".

The obvious first question is, therefore, could your specialist perform the crosslinking as part of a trial ? If so, the insurer has all but confirmed they would accept the claim.

If not, we'd need to look a little deeper into the policy document. Have you been able to dig it out and have a look through to see what it says about "experimental" or "unproven" treatments ? I've a hunch there'll be some other clauses which could be used to possibly make a case for accepting your claim. This is because it could be considered unreasonable for a private medical insurance policy to automatically decline everything that is not on the NICE-approved-by-default list. There'll probably be some additional criteria in there.

Of course, insurers can't be expected to just wave through every whacky brainwave that the more gung-ho consultants or big pharmaceutical companies dream up. But that's not what we're talking about here. Crosslinking is heading increasingly towards "customary and expected" territory. Providers should take note of this shift if they are to avoid mishandling claims. If your policy's Terms and Conditions are available online, do let me have the details. Happy to review exactly what it means.

Cheers

Chris

[itansey]

Hi Chris,

I finally got my hands on the bupa t&c's and here's what they say about experimental treatment:

Exclusion 16 Experimental drugs and treatment

We do not pay for treatment or procedures which, in our reasonable opinion, are experimental or unproved based on established medical practice in the United
Kingdom, such as drugs outside the terms of their licence or procedures which have not been satisfactorily reviewed by NICE (National Institute for Health and Clinical Excellence).

Exception: We may pay for this type of treatment of an acute condition. However, you will need our written agreement before the treatment is received and we need full clinical details from your consultant before we can give our decision. Please also see ‘Complications from excluded conditions/treatment and experimental treatment’ and ‘Drugs and dressings for out-patient or take-home use and complementary and alternative products’ in this section.


Exclusion 7 Complications from excluded conditions/ treatment and experimental treatment

We do not pay any treatment costs, including any increased treatment costs, you incur because of complications caused by a disease, illness, injury or treatment for which cover has been excluded or restricted from your membership. For example, if cover for diabetes is excluded by a special condition, and you have to spend any extra days in hospital or a treatment facility after an operation because you have diabetes, we would not pay for these extra days.

We do not pay any treatment costs you incur because of any complications arising or resulting from experimental treatment that you receive or for any subsequent treatment you may need as a result of you undergoing any experimental treatment.

http://www.bupa.co.uk/jahia/webdav/site ... -guide.pdf

Let me know what you think and what i should go back and say to BUPA.

Thanks,

Ian

[itansey]

One other thing i forgot to mention. I'm moving jobs in 3 months time so will this effect the claim. I will have BUPA cover with my new employer.