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Post Info TOPIC: Taking matters into my own hands --- My recent KC diagnosis


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Posts: 1
Date: Fri Jun 22 6:47 AM, 2012
Taking matters into my own hands --- My recent KC diagnosis

Hello all, I am new to the site here which I luckily stumbled upon. I will try to be to the point and explain what I wish to convey in my disucssion here.

- I have just been diagnosed a couple months ago having KC

- For some years I've lived with inadequate vision and eye glasses have only enabled me to instead of having aweful eyesite to have simply bad eyesite.

- I have purchased Acetyl-L-Carnosine Eyedrops (brand: CanC) and taken them over the years, they really freshen my vision up after a long day and perform much better than standard saline or PEG eyedrops but do not fix my KC.

- I also take the carotenoid vitamin: Astaxanthin which is supposed to enahance eye health, though I knew this would not fix a thing I have been told by my doc that aside from having KC my eyes are in great health and my cornea is clear and undamaged structuraly.


Now to my problem and solution to my problem, which I hope I can have some constructive feedback on:


- I was told first by my doc about "Hard" contact lenses and that they were my only treatment option to fix my eye problem.

- Being a good patient I followed doctors orders and searched out a place to get fitted for "Hard" contact lenses.

- Turns out my insurance won't cover a damn thing, neither will my supplemental insurance discount. I would have to pay out of pocket no if's ands or but's.

I AM BROKE..... So I wrote off the possibility of hard contacts as I and my sister who also has KC cannot afford the cost of examinaton and lenses at this moment in our lives being that our insurance will not help us. I am in the United States btw.

- I have recently come across CXL (cross-linking) and read extensively on it.

- I am very optimistic now about having KC since there seems to be a long term fix now to this issue. Better yet, it would appear to be something likely cheaper than hard contacts.

- I am a Chemistry undergradute attending University this moment, and have my own home lab with all the glassware and equipment I could ever want for. But I need to qualify this to you so you can understand where I will now be getting at.....


It appears unfortunatly that the (:insert obsenity here:) FDA has not yet approved CXL in the United States, and if it did it would likely cost a small fortune (i digress). Simply put, I have no formal access to CXL treatment, this treatment being the only I've found yet to be a solution to my mild/moderate KC.

- Seems to me that CXL is nothing more than administering a certain concentration of dilute B-2 solution to the eyes over a 30 minute period of exposure to UV-A light.

- Seems to me all I need is .1% Solution of Riboflavin-5-Phosphate in a sterile solution of NaCl (saline water) or Dextran T500.

- Seems to me something I am more than qualified, capable, and confident I can prepare. I have all the studies and access to research necessary which can give me the exact concentration of B-2/etc. used in the treatments.

-UV-A lamps are cheap, no worries on that front.


Soooo..... it seems that I can take matters into my own hands and CHEAPLY fix this eye condition of my ONCE AND FOR ALL!!


I am tired of living with bad vision. I can't read road signs anymore, I can't recognize faces from a fair distance, etc etc. And now that I'm finding my insurance can't help me afford hard contacts I find myself stuck with self-treating (medical profesionals in the US tremble with anger at that word) myself with my lab prepared B-2 and UVA lamp. I would most certainly prefer a vision specialist facilitate my treatment but that option doesn't even exist in the United States, and hard contacts are well out of my financial means. Can anyone offer up their thoughts on this? Perhaps there is a medical study I can enroll in for CXL in the states. I am caught between a rock and a hard place, and I want to get on with my life. I need to SEE!







Veteran Member

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Posts: 33
Date: Fri Jun 22 11:16 AM, 2012


Take a look at this link:

It is a letter to insurance companies requesting reimbursement for "medically necessary" contact lenses. It is possible that with more forceful persuasion (like the letter), your insurance company might cover contact lenses.

As for do it yourself CXL, I don't think it is a good idea. There is always the danger you could do more harm than good. Also, CXL is supposed to prevent your KC from getting worse, not help you see better.

Taking care of KC is expensive. Often I read about people being unable to afford the treatments. I wish someone would show up here and indicate that there are foundations that help pay for the cost of treatments, or doctors that offer large discounts. You are not alone with this financial problem.
The best I can do now is state the problem and hope that others have good ideas that can lead to a solution.



Veteran Member

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Posts: 93
Date: Fri Jun 22 5:39 PM, 2012

I was talking to a family member from the states who was saying its going to cost a fortune for them to get treatment which they needed (which required flights and a hotel stay within the US). They was saying in the US they inflate the prices way too much when we compared notes on the costs.

I told him if they got on to a plane which was heading to Europe, treatment is a lot cheaper, even with the flights and hotel.

Also that they will get all the options, many which are not available in the US and also the most experienced hands with them.




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Date: Thu Oct 20 11:23 PM, 2016



Veteran Member

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Posts: 74
Date: Sun Oct 30 6:46 PM, 2016

I most emphatically advise against trying to do your own CXL. It is not approved in the US because the FDA still hasn't seen clinical studies that show a consistent procedure that achieves good results such that it can be cleared for use by ophthalmologists generally. There's more to it than just administering eye drops and exposing the eye to UV light. It isn't worth risking your vision for this.

Hard contact lenses may be a good choice IF they are fit correctly and you can tolerate them. But they are not the only possibility. A good fitter will have a variety of lens options to consider for fitting the KC patient. The process can be quite time-consuming and expensive. And good fitters for medically necessary contact lenses are far and few between.

Even though KC is a medical condition. And for the KC patient, contact lenses are akin to a prosthesis, medical insurance is not going to cover any vision problem that they consider a refraction issue. You say lens, medical insurance says no.

Vision insurance is, for the most part, more marketing than insurance. If you need routine vision correction, they provide some discounts and steer you to their providers who are hoping to profit from the uninsured up sales.

However, as Emily_G pointed out, if you have vision insurance, you may have coverage for medically necessary contact lenses (MNCLs). You'll probably have to call the insurer and specifically ask if you have coverage for "medically necessary contact lenses." Those are the magic words. Recite them exactly as quoted. They don't generally make much, if any, point of this coverage. Insurance coverage has vastly improved for MNCLs. When I was first diagnosed, there was nothing. I actually had coverage for 15 years that I didn't use because I didn't know it had been added. But if you have a plan that includes MNCLs, it can actually be very good coverage. I have close to 100% coverage for my MNCL (I only wear one .

Insurance coverage for the fitting process is still thin. Ask a prospective eye care professional about how they handle insurance billing for the fitting. I think how conversant they are with handling the insurance can be a good clue about ECPs with significant MNCL practices. If they seem to know how to handle the insurance, they probably also know how to handle the lenses.

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