UK Keratoconus Self-Help and Support Association

I’ve been away with work and before I left there was a post advising that a health warning should go with any consideration of cross linking. Basically it stated that most people never progress beyond the point where their condition can be managed with glasses or contact lenses. Therefore CXL is expensive in these cases and unnecessary. This got me thinking, is this statement true?

It is a fact that a majority of people will only need contact lenses but what is the financial cost of a lifetime of contact lens wear compared to a one off CXL treatment (based on current CXL studies)?

Average age of diagnosis is 24 years (+/- 9 years from a DUSKS study)
Average lifespan in England & Wales is 80 years (Men 78 years, Women 82 years according to government figures)

Therefore based on these facts we will need to be treated for KC over a 56 year period.

Most people with KC from what I can find on this forum wear RGP Corneal Lenses (RGP Contact Lenses) and the cheapest solutions that I can find are from Get Lenses, an on line supplier at £23.70 for a three month pack which consists of a cleaner with combined wetting / soaking solution. This was cheaper than any of the own branded products in my local supermarket in the Midlands.

After contacting some optometrists they all said RGP lenses should be replaced annually even if there is no prescription change, but in reality this is more like every two years. Therefore as the NHS charge for our lenses is £54.20 per lens, the typical annual cost of lens replacement is £54.20.

Therefore the most basic annual cost to manage RGP lenses is £149.00 per year, so if we add inflation at the government’s target of 2% per year (currently about 2.5%) and factor in the 56 year period to be treated for KC, the most basic cost over this time that I come up with is £15,434.83.

If you were to factor in the additional cost on soaking lenses weekly in a protein cleaner, you can add £8.95 for 24 protein tablets which will last 12 weeks (1 tablet per lens) which also requires saline at £2.85 for 500ml which would probably last 12 weeks, so additional cost per annum is £51.13 to bring the annual cost to £213.13. Therefore over a 56 year period would make the cost of having and looking after RGP lenses £22,078.02.

I have deliberately ignored some costs because it is impossible to put a value on the quality of life and I don’t have any access to quantify how much it costs the NHS per year per patient, but I am sure it isn’t cheap. There is no cost attributed to loss of earnings due to KC issues, routine hospital visits etc.....

From the information that I have found, the average cost of CXL per eye is £1500 per eye, so £3000 for both eyes. The cheapest online loan for this amount incurs an interest rate of 14.9% from the Post Office, so over 5 years this would be £71 per month. If you were to play the credit card game and move money from one 0% interest card to another 0% card and pay on average 3% handling fee, the interest rate can come down to 6.3% over 5 years meaning paying back £58 per month. There are even bank accounts that offer an introductory £1500 overdraft at 0%.

So to summarise the cost of CXL is about 1/5th the price of managing contact lenses over a lifetime!

If caught early enough such as before needing glasses or while still wearing glasses (this is why it is so important to have regular eye tests); to me this makes sound economic sense. One of the indications that is in the current NICE guidance is that KC must be progressing. Therefore by definition if you go from having no indicators of having KC to being diagnosed with KC, then it is progressing.

The NICE guidelines were issued in 2009 and they said further studies were required, they never actually said hospitals are forbidden from providing CXL treatment on the NHS. Therefore if your consultant applied to the hospital for funding (which I believe has been the case for over 8 years for the provision of intacs), you could be treated on the NHS. From Anne Klepacz post, NICE are revisiting this and with the studies that I am aware of that have been conducted in the UK and Europe it is now only a matter of time before CXL is fully endorsed by NICE.

Over the past 5 years or so many people have had CXL with few issues, there are some on this forum, but on the whole it appears there a majority are successes. Studies in some countries have been going on for in excess of 10 years with no major complications reported which is nearly 1/5th of the period we might need treating over if relying solely on contact lenses.

We still must always consider be it being treated privately or on the NHS the competence of the surgeon and there is no such thing as risk free treatment, surgical or non-surgical (e.g. using contact lenses).

I am of the opinion that discouraging people researching CXL and having the treatment when first diagnosed with KC runs the risk of condemning yet another generation to needless contact lens wear and the issues it brings even if you consider yourself to be managing very well with them.

Excellent, logical post IMHO.

Gareth, I havent seen the original post, hence dont know the details. However, there's no doubt that crosslinking is very "fashionable" at present and one has to be careful. It appears to me that most KC sufferers seeing some corneal surgeons involved with CXL privately are recommended to have it done regardless of their age, or stability of their KC. A little while ago a patient of mine saw a corneal surgeon privately because his wife had laser eye surgery by him and he thought he would have a consultation as well, as one does! Surprisingly, he was advised to have CXL despite the fact that he was in his late 40s and still wearing the same fit RGP lenses for over 20 years, and showing no evidence of progression. I appreciate that his KC could progress spontaneously, but its unlikely and no effort was made to establish the history to ascertain if there was any progression. As you know crosslinking technology is advancing and I am sure it will continue to be refined, so all research is welcome and perhaps one day it will be routine procedure to carry out CXL before any clinical signs are evident to stop KC in its tracks. Is it wise to carry it out at diagnosis at present? I am not sure, and it might be argued that I am biased as I fit contact lenses! There's no doubt that financially CXL is much cheaper than lifetime cost of contact lenses, after-care, solutions, loss of income related to contact lens complications etc. One could make the same argument for laser eye surgery for short-sightedness which is financially a lot cheaper than wearing contact lenses or purchasing new glasses every couple of years, but a lot of people avoid it as they are concerned about possible complications. Similar caution needs to be exercised regarding crosslinking unless there's clear evidence of progression.

Hi Ali

I can see your logic but I can also give you case histories of patients in their 40's who, although not progressing, are not at all stable either. CXL has positively helped them stabilise and given them improved visual function.

The latest follow up studies on CXL are showing that improvements in VA are continuing into the 6th and 7th years post op. My own follow ups are showing an improvement in visual function that can often lead to improved spectacle VA and return to disposable/normal lathe cut soft lenses after 3-4 years post CXL.

I felt much as you do now even up to last year. After following up CXL patients for many years now though, I am finally seeing benefits which are currently not quite explainable. The most recent research based on Scheimpflug topography imply the changes take place on the posterior corneal surface, which is possibly why there seems to be a lack of hard evidence of improvement via corneal surface topography. However, these improvements ARE tangible and measurable.

I am also not sure that laser surgery is a correct analogy here. Laser refractive surgery is not a treatment for an eye condition - it is a cosmetic solution for refractive error. People with normal refractive errors can at least function with mainstream spectacles and contact lenses. People with KC cannot - they have a medical condition for which there is now, currently, a bone fide treatment regime that is currently still going through NHS/FDA accreditation. Like many other treatments, until it is approved, it is only available privately.

I think what Gareth is saying here, is that much is made of the fact that CXL is a costly private procedure. However, even with NHS subsidy, contact lenses are more expensive over a lifetime of use. So, perhaps we should take private health care costs out of the equation and look at the whole picture with regards to this procedure?.

Finally, for those with slightly longer memories.... I would point out that a few years ago, I was being very cautious about CXL and was attacked, on this very forum, for being anti progress re this procedure. I find it interesting that I am now regarded as being on the "pro" CXL side.

In fact, my views are entirely being driven by the clinical evidence. This procedure started in the early 1990s. After nearly 20 years of study results and my own clinical records, the overwhelming evidence is that CXL, at last, is proving to be a real benefit in improving the quality of life of people with KC.

Lynn

I note your comments Lynn and we are in agreement that crosslinking is worth serious consideration if there are signs of progression. However, I hope you are not suggesting that the patient I was referring to in my previous post in his late 40s with no evidence of progression over a 20 year period should still have crosslinking "just in case". There's no doubt in my mind that if he had seen the same consultant in an NHS setting he would have been told his KC is stable, hence doesnt need CXL. However, rules seem to change when patients are seen privately! Perhaps I am a cynic. I realise laser eye surgery isnt a terribly good analogy, I only gave it to make the point that cost alone is not and should not be the only consideration when undergoing an invasive procedure with potential risks of complication.

In terms of annual costs other than lenses, Boston solutions, hypromellose, I find it's the tissues and saline that are expensive. I use the 'ultra soft' tissues because they don't shred like cheap ones and I use the Bausch & Lomb saline [£4 per bottle] because I find with supermarket saline the nozzle hole is much smaller and when it's half empty I get RSI squeezing the damn thing hence why I get the more expensive saline because the nozzle is much wider.

I'm interested to know what percentage of people who have had CXL end up having grafts [or not]?

Lou

The cost of saline I quote, £2.85 is for a 500ml bottle of the Bausch & Lomb sensitive eyes saline from http://www.getlenses.co.uk, this is the price if you order four or more and if your order is above a certain value, delivery is free to. Get Lenses is also the cheapest place I have found for the Bausch & Lomb lens cleaning solutions; you need to shop on line and you'll save money for the Treckie stuff

In Europe CXL is done by removing the epithelium and of people treated in this manner I haven't found anyone that has gone on to have a graft. However I have heard of some people that had CXL with the epithelium in place (this is the accepted practise in America) have gone on to require a graft later on but I understand that their corneas were already very thin and they went for CXL to see if it would stop / delay the need for a graft. There is one I know of definitly because he used to post on this forum many years ago when CXL was relatively new to us.

The fact is that 95% (I think?) of people never need a graft and where I have discussed this with optometerists and ophthalmologists I always come away convinced that if CXL were the first line of treatment that even fewer grafts will be required in the future and long term the NHS would save money as these people would require less after care. In the short to mid term there will still be may of us where it is too late for CXL that will need to be looked after for the rest of our lives.

Plus in addition, if it is the NHS's desire that the 'less complex' cases are treated in the community, this may be easier and more workable if people newly diagnosed have their KC halted before it becomes a real issue?

If anyone has the patience to look at some of my early posts about CXL (you will have to go back a few years) I was very wary of this treatment, but the more I have learnt about this treatment, looked at the studies and spoken to those who have undergone the treatment, I feel others should be equally open to this treatment.

Chris split the original topic. The discussion continued at

viewtopic.php?f=1&t=7791&start=10

I am tempted to offer my own answers to the questions that head this string, but I'll exercise self control and abstain.