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The high cost to avoid going blind

The provincial MCP plan considers Refractive Lens Exchange an elective procedure and means patients must pay for the surgery, which can exceed $10,000, even when the procedure is necessary to prevent permanent blindness. – © Pixabay

By RYAN KING

Editor’s note: Patient’s name has been redacted to protect privacy.

PORT AUX BASQUES – As Canadians, we often take it for granted that when faced with dire medical needs, costs will be covered by our province’s Medical Care Plan (MCP). Sadly, this is not always the case. A 50-year-old male who wishes to remain anonymous and who we will call ‘John Doe’, has been told that he will go blind in five-to-ten years without surgical intervention, and that he will have to pay for that surgery out of pocket.

“I noticed my new glasses, that I’ve only had for three months, weren’t focusing right on the TV, so I went to my eye doctor, and we determined after about an hour and a half that there’s nothing wrong with the glasses. There’s something wrong with my eyes,” said John Doe.

After a thorough examination, it was determined that there were multiple serious issues causing the problem. There were four degenerative conditions found in John Doe’s eyes: Sclerosis, cataracts, thinning of the back of his eye lenses, and pavement patching.

“The sclerosis is basically like if you’re looking through a coke bottle. You know how everything is discoloured and kind of faded and muted? The sclerosis will eventually cloud my entire field of vision in both eyes. So it’ll be like looking through a window from the 1800s where it’s just off, not focusing, but sometimes I might be able to get a peek through that clean spot, but the second I move or blink… And the cataract, as we all know, is natural. I have a thinning of the back of my lens. I also have something called pavement patching which is like a stretching and a pebbling,” explains John Doe.

The impact of these conditions has resulted in a degradation of his vision in the past six months that was equal to the previous five years of deterioration. His doctor confirmed to John Doe that this will only get progressively worse, and that the surgery needed is not covered by MCP.

In fact, lens replacement is considered an elective surgery by the provincial government. Most people call it laser eye surgery, and it is a commonplace procedure for those looking to correct their vision to avoid wearing glasses or contacts. In John Doe’s case, the procedure is the only way to avoid eventual blindness.

A surgeon will have to replace his lenses with plastic lenses that won’t discolour and obscure his vision further over time. Of course, that means that John Doe won’t have to wear glasses anymore either, but that’s not what concerns him.

“He told me I have two options. One is I can continue to let my eyes degrade to the point with the sclerosis and the cataracts, I can’t see, and then it’ll be paid for by the government to get work done on my eyes, which will be in anywhere from 5 to 10 years. Or I can pay out of pocket to have a refractive lens exchange done, which is the removal of my natural lenses in my eyes and then the insertion of artificial or synthetic lenses,” he said.

By the 5-to-10 year mark, John Doe says that he will be largely blind before the government would step in for the surgery.

“Once I literally cannot function at anything except sitting down and learning Braille, because my doctor told me that ‘eventually there are not going to be any glasses that’ll give you vision, and you can wait it out, but you’re going to have a harder time seeing, you’re going not going to be able to drive, you’re not going to be able to read or watch TV.'”

The cost for the corrective surgery before John Doe’s eyes deteriorate to the point where MCP will intervene is staggering.

“I looked it up, but it’s going to be anywhere from $3,000 to $6,000 (per eye), and so it could be $7,000, it could be $12,000 to get this done. But I don’t want to wait the five or ten years it’s going to take for this to happen. I want to arrest this and get my eyes fixed,” he says.

Even waiting it out will come with its own cost, as John Doe will need to constantly change out the lenses of his glasses before reaching the point of no return.

“I don’t want to become gradually worse and worse and have to correct my glasses every three or four months, which is what I’m at now as I just paid $1,000 for these, and I got them in April. Now I have to get new glasses. I’m not going to do it. Even getting new glasses every three months, it’s not going to correct my vision to where it needs to be,” he said.

John Doe says his doctor agreed that this surgery is necessary and not really an elective choice.

“This is my eye health more than glasses. He doesn’t care if he sells me glasses. He wants my eyes right, but MCP with this procedure should be in the same boat, but they’re not. It’s all just about getting you to see, and they don’t care about the health of your eyes. That’s what I get out of it anyway. It’s horrible. And it’s keeping me up at nights. Man, like every day I’m worried about how much more am I going to see.”

Erin Shea, Director of Communications at Department of Health and Community Services for Newfoundland and Labrador, confirms that the surgery needed, a Refractive Lens Exchange, is seen as elective.

“Refractive lens exchange (RLE) is a non-insured procedure. It involves removal of the lens and replacement with an intra-ocular lens implant. As it is considered a surgical alternative to wearing glasses and contact lens, it is an elective procedure,” stated Shea.

However, Shea did note that cases where it is medically necessary can, in fact, be insured.

“In Newfoundland and Labrador, the medically necessary removal and replacement of a cataractous lens by any procedure is an insured service and available in hospitals or approved private facilities at no cost to the patient,” said Shea.

As to how it can be deemed medically necessary, the province says that this is in the hands of the patient’s doctor, though this has not been the experience to date for John Doe.

“Clinical decisions as to whether a proposed procedure is medically necessary for a given patient at a given point in time are usually made by the attending physician. The Department does not comment on individual cases, including physicians’ diagnoses or recommendations for treatment,” replied Shea.

Calls to facilities offering RLE in the province were met by answering machines, and frontline staff who responded would only state that the MCP department for the province would need to be contacted to see if it can be covered.

The final decision, then, on what MCP will accept as a medically necessary diagnosis for RLE seems to be what is decided from a patient’s physician. That means the future of John Doe’s eyesight comes down to a physician’s discretion as opposed to any structured criteria or guidelines. When it comes to something as critical eyesight, that can leave patients like John Doe feeling helpless, frustrated and stressed.

His best hope is that his doctor delivers a diagnosis that the RLE is ‘medically necessary’, so it will be covered. But when does surgical intervention to correct sclerosis become ‘medically necessary’? Currently it would seem that a prognosis of five years out is insufficient.

Other provinces like Ontario have provincial health care plans that cover RLE for conditions like sclerosis.

Doe says that he is lucky in that if he has to, he can probably scrape together the money and will likely do just that. Waiting to go ‘blind enough’ for MCP to pay for the surgery represents a significant negative impact on his lifestyle, his family, and his career. He’s already feeling the toll the unknown is taking on his mental and emotional health.

“But what if I can’t find the money? What if other people in the same boat can’t find the money?, Its not like I keep 10,000 dollars sitting aside.” says John Doe. “This is not optional for me.”

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