CXL Debate

[cclman]

Phew..........finally got the page to open having gone from page to page. 5 mins later I'm here!!

Well I agree with your points up to a point and you do make sense on the insurance debate BUT I am a bit of a "Michael Moore" fan and so I always have a healthy caution for most things. Remember Insurance companies the world over need doctors or a "medical generals" or boards of doctors to shall we say.... "sign off" illness and conditions so they dont have to part with their billions in cash profits from insurance payments. Its just a little to strange that KC and intacts are thought off as being "cosmetic" and a little too convenient!! Some man or men and women enjoyed a fast car or a good holiday so that KC could be binned as a non payer by insurance companies!!! trust me on that I'm sure its true.

[Andrew MacLean]

Actually, this is a sign that we ought to be careful about the terms of any financial contract we sign.

Some private health insurance policies include keratoconus and other exclude the condition; not necessarily because it is 'cosmetic', but because in some populations it is relatively common.

Also, some treatments may be included and others excluded by a given insurance contract. This is usually on the basis of a cost-benefit analysis. If keratoconus is an insured risk, then insurance contracts will be written on the basis of the company's assessment of the benefit that will accrue against the costs involved. Some therapies will be offered as a temporary measure with the possibility of more expensive treatment to follow. Some therapies may prove to offset completely the risk of another and more expensive therapy to follow.

As time goes by the various strategies for 'corneal stiffening' may come to be recognized as having value, not only in themselves, but also as a way of preventing the need for a subsequent and more expensive intervention. If and when that becomes established, I guess that those policies that offer cover for keratoconus will fall over themselves to make sure that these 'cornea stiffening' therapies are offered as early as possible.

But, for now, the advice still holds good: read the small print before signing on the dotted line!

Andrew

[Dubai Gal]

I had my CLX covered by my private health insurance, they did try to exclude it on a correcting 'refractory error' basis, but I went back to them with lots of supporting documents/evidence that it is used to stop proression and to try and prevent the need for a corneal graft etc etc and tit is not designed to correct a refractory error and they covered it. I think it's a standard thing that insurance companies try to get out of paying anything out though!!

[rsnr]

Hallo everyone. First of all, must say that I am very happy this support group exists as everyone is very helpful and there is a lot of information and personal experience circulating. Now to the problem.
I was diagnosed wit KC a year ago, but it was quite progressed. Before that my doctors thought I had astegmatism. I am originally from Bulgaria but study in the UK. During my last visit to the corneal specialist at York District, he was very possitive about Crosslinking and said that's the best option for you at this time. When I asked him about his experience with the procedure his exact words were: "Had the equipment for a year now, would love to give it a go". I did some asking around and people said he's a good specialist but obviously has no experience with crosslinking. Do you think I should trust him? I mean my options are limited anyways. I have another appointment in may to track the progress with Orbscan and will probably have the procedure in June. What do you think?

Thank you in advance.

Martin

[Lynn White]

Hi there rsnr,

No-one can give an opinion like that on limited information. Everyone has to learn at some point but you cannot judge a person's competency in a procedure if he has never done it.

On the other hand, cross linking itself does not involve a massive amount of physical skill (as opposed to doing a graft, say).

My instinct would be to ask him if he intends to get guidance from another professional on the procedure. I wouldn't really be happy to be the first patient without him having back up?

Lynn

[Anne Klepacz]

I guess this is an issue that people face all the time as new treatments or options become available, whether for KC or other conditions. Increasing numbers of specialists will be being trained in inserting Intacs or doing crosslinking, and all will need to do the procedure for the first time for real! I dare say some of us will have had a corneal transplant performed for the first time by a fledgling registrar - though with the supervision of a consultant. Our medic members here will probably know more than I do about the protocols involved in the use of new technologies.
But the other important question for us as patients is, is this the right procedure for me at this time? As with any surgical procedure, we need to know the benefits and risks involved. Questions such as, will I still need to wear contact lenses after the procedure, what is the rate of progress of the KC (is it stabilising anyway without any intervention), is there a risk it could make things worse, and many more! It's more difficult with new procedures when there isn't any long term data to go on. Ultimately of course, no one else can make the decision for us. And there would be no progress in new treatments if some people weren't willing to go for it! Good luck, whatever you decide.
Anne

[Dubai Gal]

Hi rsnr,

I had my CXL a year and a half ago, and at that time my Dr. here in Dubai had done it one a good few people but not to the same extent that she has now. Even so I decided to go ahead with it as she had a good reputation and sometimes you just have to take a risk (a calculated one of course!) Having said that I am not sure I would like to be the very first as I am not at the point where I have 'nothing to lose' as I still have decent vision with glasses.
For CXL in general it was the best thing I have done so far in relation to my KC. I have wasted time with contact lenses for years whilst allowing it to progress and never really getting anywhere, and my eyes have even shown great improvement in the reduction of my KC since the CXL (though my refraftory error remains the same.) I am now looking into the PRK plus another CXL to try to correct as much as possible of my -7 refractory error.
Had I left my eye and not done CXL I would be looking at a graft not far from now, as the Dr. noticed some scarring from Hydrops from before my CXL and ym eyes were progressing. Even though there have been many who have had successful grafts there have also been many who have not and I want to try everything possible before I get to that point. For me CXL is a no brainer. They say there is no long term data, yada yada yada,I believe they have around 10 years ish? Well if I have to repeat it in 10 years I am more than happy to, and if for some reason I can't repeat it and my cornea needs a graft, well I least I got 10 more years with my own cornea (from my point of view, as I said, I can manage just fine with glasses with both eyes.) But my KC was definitely progressing so I needed to do something. I would definitely do lots of research and talk to a few different people before you make your decision, for me it was the right choice.

Good luck.