The "name” problem of dry eye
For many, many years, we’ve talked about and agonized about this problem:
“Dry eye”… is the wrong name or what we’re experiencing. Period.
We can talk about dry eye “definitions” till the cows come home. The National Eye Institute had a definition of dry eye in 1995, then the Tear Film & Ocular Surface Society had a new one in 2007, then they redefined it in 2017. Over the years, the medical definitions have progressively broadened from inadequate tear production to pretty much anything and everything that can go wrong with the tear film for any reason whatsoever (whether or not it matters to the patient all that much).
But our issue, the issue we wrestle with as a community, is less with the definition of dry eye than with the NAME “dry eye”.
“Dry eye” is inaccurate and trivializing… among other things.
Back in 2017 I rant-blogged about this a bit.
"Dry eye" is a thoroughly entrenched and therefore unavoidable yet inaccurate and trivializing misnomer whose ubiquitous use with reference to heterogeneous disease states of the tear system and/or the symptoms ostensibly related thereto frequently works to the detriment of patients.
All that is true and I stand by it.
And yet… it’s just, somehow, not the point. Yes, I missed the point when I wrote that. I was focused more on medical details than anything else.
It’s true that “dry eye” is inaccurate. For almost everyone who is ever diagnosed with “dry eye”. But even inaccuracy is not the point.
It’s true that “dry eye” is trivializing. And that’s a huge problem for people who have a version of it that is life-changing, even debilitating.
But perhaps the biggest problem is using a single name for an entire spectrum.
The term “dry eye”, including “chronic dry eye”, “dry eye syndrome, and as of more recently, “dry eye disease”, is applied equally to an entire disease spectrum.
They use the term “dry eye” for the entire spectrum of (a) symptoms and (b) disease states. That means:
A little irritation on a windy day is “dry eye”
Suicide-inducing pain is “dry eye”
Mild reduction in TBUT (tear film break-up time) is “dry eye” (evaporative type).
Mild reduction in tear production is “dry eye” (aqueous deficient type).
Surface damage when lids don’t close is “dry eye” (secondary to exposure).
Ulcerated corneas may be considered due to “dry eye”.
Et cetera.
“Dry eye” is common or rare - depending who you’re talking about.
We know there are A LOT of people with dry eye around the world. TFOS DEWS II epidemiology report put the numbers at 5% to 50% - a ridiculous range, really, but because study measures are inconsistent and dry eye varies geographically and ethnically and along many other lines as well.
I was thinking about this while I was at AAO (American Academy of Ophthalmology annual meeting recently). I had an hourlong meeting with the global head of ocular health of an pharmaceutical company... an incredibly smart professional. She described their dry eye "funnel" from the perspective of a drug and device manufacturer. From the 30mm people in the US believed to have "dry eye", only so many are symptomatic, only so many are motivated to see a doctor, and only so many (about 1mm) are ever actually prescribed a drug.
Whoa. Are there really only 1 million of us?
By “us”, I mean people whose life is affected in a significant way by dry eye and who struggle to get the means to manage it successfully.
So, I repeat: It is believed that only 1 million people in the US get prescribed a dry eye drug.
I had to do some mental math before I could even begin to wrap my brain around the possibility that the number is actually that small. I think that the Restasis sales data have always led me to believe this is much more widespread… yet I never had the basis to attempt to do the math to try to work from the sales data to the people.
It seems so simple, and yet it was an epiphany moment for me.
1 million out of 327 million = only 0.3% of the US population
But is 1 million… us?
Is everyone who ever gets prescribed Restasis, Xiidra, a steroid or doxy or whatever, for dry eye, like “us”?
What about all the people who are diagnosed and prescribed something for dry eye, but who never even use artificial tears (or any other remedy), never switch doctors looking for better help, never scramble for solutions, because that drug solves whatever mild to moderate problem they have?
So… what if there are less than 1 million of us? What does that mean?
At this point, I found myself googling orphan diseases. The definition of an orphan disease in the US is fewer than 200,000 people nationwide.
Read here about the Orphan Drug Act passed in 1983 to create financial incentives for drug and biologics manufacturers.
I’m not saying we’re an orphan disease. But we might be. And that might actually be a pathway to getting better help.
Now back to the name question
It’s time to connect the dots. We who struggle with “dry eye disease” - we need to define ourselves, specifically. We need a name for what we have that separates us from the 30 million, so that we can more effectively advocate for our needs.
My answer to that is Ocular Surface Pain Disorder (OSPD). This is something I’ve been working on for a few months now, and thinking about the numbers just brought it to a head for me.
The concept of ocular surface pain disorder as a diagnosis is not a term that will ever replace anything else, and is not a diagnosis based upon any clinical signs of anything. It’s a separate, parallel diagnosis based on pain scores alone, and it is in ADDITION to any applicable clinical diagnosis (e.g. aqueous deficient dry eye, meibomian gland dysfunction, Sjogrens, etc).
There are many, many precedents for health conditions - from pain syndromes to mood disorders - that are classed and diagnosed and treated on the basis of patient-reported symptom scores. That’s us. We need to head that direction. Because what is wreaking havoc with our lives is not our tear break-up time or some clogged meibomian glands or some dysfunctional glands or even some twisted nerves. It’s pain itself.
Pain is the correct term for almost all of our symptoms, from burning to FBS to light sensitivity) and the impact of pain on functional vision and quality of life. We need to embrace and own this term and focus on it as we move ahead in advocacy.
By the way….
Thinking about us as a smaller group than I have done hitherto has actually been quite helpful for me.
I think that it could be much easier for us as a community to understand, and explain, and accept the medical community’s failures to help us if we ourselves understand that we are a small group that they are not learning about.
They are learning about “dry eye” - mainstream, not-a-big-deal dry eye, at their conferences and in their literature. They are not learning about OUR “dry eye”. This is painfully clear to me at these conferences, when I see the the very top brains of ophthalmology on dry eye disease and dry eye neuropathic pain teaching a pretty small room of peers and sometimes with half the seats empty. We have a lot of science at the ready but… is that science ever going to find its way into common everyday eye care practices? Not really. At best, it’s an incredibly slow process, but much, maybe most of it is just way too specialized to make the journey. This is why we need to start looking at re-defining the problem itself, on the way to finding solutions for the problem.