CXL Debate

[Lynn White]

Anne,

I agree with you and Rosemary that it is difficult to know when to jump on the CXL bandwagon. Certainly, now we are more aware of KC and detecting it earlier, it is hard to say whether a certain person's KC will progress or not. This implies that really we ought to be redefining KC and monitoring it more closely in order to be able to pick up on signs that indicate a fast vs slow or non-existant progression.

Up until now, firm diagnosis and definition has been based on non-topographic signs. This was brought home to me in Trinidad when I worked there. There is no eye bank there, only a limited number of contact lens options and a lot of people non tolerant to RGP lenses. Hence many ophthalmologists were reluctant to even diagnose KC until it was really advanced as actually, where did it get anyone?

Now that we have CXL as an option, the situation is much changed. We need to catch KC much earlier, monitor it more effectively, and pick up on clinical evidence to indicate how it might progress. This will take time and meanwhile, detection is not that consistent. I am currently dealing with a patient that was being monitored by a UK hospital. They had given a scleral lens for the left eye but had totally missed the right eye progression which has now overtaken the left and was only discovered by a clinic abroad while the patient was visiting there.

When I was in South Africa recently, it was suggested at the conference I was at, that in the future, insurance companies may well insist that CXL be done in any suspect cases to obviate the possibility of future grafting. Now that would seem to be going to the other extreme but you can see how this could arise!

The Crystal Ball thing:
Ahhhh now couldn't we all do with this! If you think of it, we currently live in a "'elf an' safety" environment. Almost anyone over 55 is on a variety of blood pressure pills and statins to reduce cholesterol. We do as we are told because we are told its good for us. But is it? For all we know, you or I could go throughout life without a problem but have to put up with taking pills with possible side effects all our lives because medical research says its the best thing to do.

Thing is: medics deal with the consequences of illness all the time. So a corneal surgeon is looking at people who have left things too late day after day. Contact lens fitters are always dealing with people who are intolerant to lenses. This does shape our responses to new treatments.

I suppose what I mean to say then, is that we know what will happen if the KC is progressive. But how do we know that? I know its an extreme comparison, but there are women who have mastectomies as a prophylactic. If their family history points to breast cancer, they would rather do the surgery than risk the disease. Gareth points out he would rather a child of his have CXL than risk KC. Its a hard decision!

Lynn

[cclman]

One important thing I did not metion or anyone else- is insurance. I am British and my wife is French. We tried to get an intact and cxl paid for by our French medical insurance. We went to a clinic in Paris. We were told by our insurance that its not covered ( I mean the treatment is not paid for by our insurance) why because they consider it cosmetic Not being in the UK anymore (thank goodness) and being out of touch with that kind of thing there, is it he same in the UK in that insurance companies will not pay either if yes don't you find that crazy

I had to pay from own pocket 1,000 pounds to the clinic to have ccl/cxl done. Maybe its juts a French issue with insurance how they can say KC and rings (intacts) are cosmetic I will never understand. Enough from me I'v rattled on too much. Bye.

[GarethB]

cclman,

Hope I am not misreading your post, but people in the UK were getting intacs done privatly through their health care insurance, especially when the insurance was taken out before the KC was diagnosed. I have come across a couple people in the UK now who have had CXL done too through their private healthcare.

The issues come when KC is diagnosed before you take out priovate healthcare as many refuse to cover pre-existing conditions which in many respects I can understand as they are in the business to make money and not be a charity.

[pepepepe]

My personal view is that in the UK it is very balanced or as balanced as it can be for the most part. If we go east - say to China health care is more state run, if you go west from here to to say the states the health care is more privately run, here in the UK I think you have the best of both worlds.

When I mentioned to my GP about Crosslinking - she said quick as a flash with out even drawing a breath or blinking an eye "Do It"

[cclman]

cclman,

Hope I am not misreading your post, but people in the UK were getting intacs done privatly through their health care insurance, especially when the insurance was taken out before the KC was diagnosed. I have come across a couple people in the UK now who have had CXL done too through their private healthcare.

The issues come when KC is diagnosed before you take out priovate healthcare as many refuse to cover pre-existing conditions which in many respects I can understand as they are in the business to make money and not be a charity.

Well my sitauation is a bit diffrent in regards to health insurance. Just to expalin again, I'm British my wife is French we don't live in the UK but in a country in eastern Europe as we work here. My wife pays the health insurance which is French. They (the French health insurance company or as the French call it "social insurance") told us they would not pay for intacts (rings) as they think its cosmetic as glasses will fix the problem. That's their crazy logic. I don't know if that is the case in the UK for all or some health insurance but I would be interested to know. I get more cynical in my old age so I would not be surprised if it was the same in the UK. In the end, I had clx/ccl done in the Czech Republic (as I live near that country) and not intacts. I paid for it myself.

[rosemary johnson]

NOt that I wish to claim to be an expert in the field....
.... but I'd think it would depend on how good the vision could be made with glasses - and mow much the intacs might improve that.
In which sense...... if intacs and ccl/cxl are to be done together in early stages of KC, before it progresses too far, then the difference in vision may not be great so it might count as "csmetic" - in the same way as people who want laser surgery so they don't have to wear specs.
By the time the KC has advanced and the vision is already pretty poor, then it may be classed as "medically necessary" - but by then, CXL may be of little benefit, or impossible (because cornea too thin).
And by the time the KC has advanced that much, the chances are it would e counted as a "pre-existing condition" because you've had it long enough to have passed at least one renewal date onthe insurance and had to fill in the renewal questionnaires.
Unless, of course, the insurance scheme comes through an employer big enough for them not to be so strict onthe "preexisting conditions" rules because of the large size of the company deal.
Please do bear in mind that health insurance in the UK is regarded as a "luxury" for those who can afford it, with the aim of getting privately the treatment the NHS would (probably!) provide - but with the aim of jumping the waiting list queue, and picking your time to fit in with other events in your life. IN other countries without an equivalent NHS system and where health insurance is "compulsory" and what one has to rely on, the system may work rather differently. (We also have providers of health insurance for people going abroad, which can vary enormously between companies.]
Rosemary

[Lynn White]

Healthcare systems vary all over the world, but one of the main problems underlying treatment of KC is the lack of understanding of the condition by many health systems. Strangely in the UK, the NHS fully recognises KC and its correction with contact lenses, but private healthcare still reckons CLs are "cosmetic". In the UK, as CXL is still undergoing trials in the NHS, so many seek private treatment.

What has happened is that KC treatment has been static for many years and even diagnosis is still stuck in pre-topography mode. Events have moved very fast and everyone is playing catch up. It is a fact that most advances in recognition of conditions globally are driven by patient groups. Diabetes and breast cancer are two high profile conditions mainly because patient groups applied pressure in conjunction with interested professionals. Unless this happens, private medical insurance feels there is not a problem that needs to be dealt with. This isn't fair but it is life!

Lynn

[Andrew MacLean]

I've been away during much of this debate, but I have been interested to read through the various posts.

As an ethics 'insider' I guess I have a different perspective on new treatments to many others. There is a temptation to insist that everything should be available to everybody as soon as possible. There is a corresponding temptation to insist that nothing should be available to anybody until every avenue has been explored and the treatment can be guaranteed as 'safe'.

In the UK the ethics committees attached to the NHS tend to steer between these two extremes and focus on the issue of 'Informed Consent'. Trials are authorized and patients who are accepted for the trials are recruited on the basis of their fitting into fixed criteria and on the condition t hat they are aware that the treatment is 'experimental' and that not all side effects are currently understood.

As a treatment emerges from trials, patients being offered the new treatment will first hear an explanation of the therapeutic goal of the treatment and a description of the known possible side-effects. In the case of CXL they also ought to be told that there is no way of telling whether or not their condition, if left alone, will progress.

Once all this has been explained, it can be assumed that the patient is in a position to give 'informed consent'.

I think it is fairly well known that the precautionary principle grew out of the painful experience of thalidomide in the 1960's.

Andrew

[cclman]

god the forum is slow to open all valid points. I still think its crazy that insurance companies think ccl/cxl and intacts are cosmetic!!! if we let them get away with it they always will, but as said o the above posts it takes patient groups to apply pressure, but some doctor (or doctors) must have been paid a stack of money by the insurance companies to sign ccl/cxl and intacts "off" as cosmetic or am I being too synical

[Lynn White]

cclman

I think you are being just a bit cynical

I think there is a great resistance in insurance companies to admit to new medical "necessities". This tends to open expensive floodgates and you have to remember that they are in business - they are not obligated to extend insurance to people at all. Hence you have to go through extensive descriptions of your medical background when being taken on by them. This is partly why the NHS was created - to deal with actual medical conditions irrespective of financial implications. However, even this well intentioned outlook is now being put severely to the test by ever increasingly expensive drugs and treatments.

The NHS does acknowledge the medical need for contact lenses and consultants have the ability to say yes or no to this. However, in the private sector things get a little more complicated. Intacs were first invented to correct myopia - short sight. This could be considered an entirely cosmetic correction as one could always wear glasses or contact lenses. If one said, OK then CXL is a medical necessity, surely? Well, it hasn't been around enough to definitely prove it will stop progression of keratoconus indefinitely. So when is it a medical necessity? When you have just been diagnosed with possible KC and you don't know its going to progress? Or later when it is fast progressing? Who draws what line?

Andrew is quite right - we in the UK are particularly haunted by the Thalidomide disaster. It taught us that what seemed to be an innocuous treatment could have horrendous consequences. For those of you too young to remember, Thalidomide was a mild anti nausea tablet given to pregnant women for morning sickness - it also helped them sleep. However, what did not come out in the trials is that it is tetragenic - that is it damages the unborn foetus. Many children all over the world were born without limbs.

Recently, aspirin came under fire after being considered so beneficial for years that people were advised to take it routinely over 40.

This all points to being very cautious about new treatments, no matter how safe they appear to be in the short term. But then defining "short" and "long" term is very difficult!

None of this is easy. There are no clear answers. Its a case of risk assessment and every individual has a different definition of what their own risks are. I will admit that professionals can get over-enthusiastic about treatments - mainly because they have to deal with the consequences of conditions day after day and the really want to help their patients. Some patients want cures no matter how new or how untried they are. Its human nature and often its the combination of professional enthusiasm and patient eagerness that pioneers groundbreaking medical treatments.

So cclman, I do think you are being cynical about doctors as they do have to weigh everything neutrally. Insurance companies, on the other hand, are businesses and have an entirely different agenda!

Lynn