Podcast: Wet AMD and the treatment burden on patients

David Hutton from Ophthalmology Times and Jay Duker talk about wet AMD and the burdens of treatment on patients thanks to the consistent need for follow-ups and more.

Editor’s note: This transcript has been edited for clarity.

David Hutton:

Welcome to EyePod, a podcast series from Ophthalmology Times in which we engage with key opinion leaders in interviews about the latest innovations in the areas of surgery, clinical diagnosis, therapeutics, imaging, device technology, gene and cell therapy, practice management, and other cutting edge topics. I'm your host, David Hutton. I'm joined today by Doctor Jay Duker, who's going to talk about wet AMD. First, Doctor Duker, let's focus on how this disease disproportionately affects elderly minorities and those in lower economic status.

Jay Duker:

Well, David, thanks for inviting me, I'm happy to have the discussion around wet age related macular degeneration. First of all, wet AMD is age related. And so it's really not diagnosed in anybody under the age of 60. So it is a disease that disproportionately affects elderly people. And in fact, if you make it to age 80, you have about a one out of three chance of having some degree of macular degeneration. If you make it to age of 90, 50% of 90 year olds and older have some degree of age related macular degeneration.

The good news is for most of those people, they are affected mildly. They have the form called dry macular degeneration, which can get very serious, but for most people, it doesn't. Wet macular degeneration or neovascular AMD can be a very serious disease if untreated. Good news is we have some very good treatments for wet macular degeneration. The bad news is the treatments aren't a cure, and they need to be repeated, really, every month or two indefinitely for the rest of the patient's life. So what does that mean?

Well, when you talk about different classes of economic backgrounds in the United States in the disproportionality of it, this is almost entirely a Medicare age group affected. And for those who do not have a secondary carrier, there can be quite a bit of out of pocket expenses, since the medications, which need to be delivered, on average, 6 times or more a year, are approximately $2,000 a dose. There's that level of just the direct cost of the treatment, which needs to be understood, but then there is quite a bit of what I call indirect costs. Indirect costs, if you're 85 years old, and you live alone, and you have limited vision, and you need to get to your doctor every month or two, to have a shot in your eyes so that you don't lose more vision.

The burden on the family, friends, the community to enable that patient to get to the visits you can imagine can be tremendous. Family members have to take time off from work, or local community needs to pitch in and help out and we see this in our practices really on a daily basis. So those indirect costs to the patient, the community and society are really hard to measure. But they're tremendous. And it's due to what we refer to as the treatment burden of these wet AMD treatments.

David Hutton:

You see those lower economic status working later in life. And you know, they can't miss work for their monthly appointments. What kind of stress does that put on the patient not only in their treatment, but maybe creating anxiety, which can also increase...

Jay Duker:

Again I think that that's just another significant layer of anxiety. When you ask people about their fears, in their health, the fear of going blind is always number one or number two on the list. People are afraid that they will lose their sight and lose their independence and lose their ability to be a functioning member of society. And it's easy as a retina specialist when you're treating, you know, dozens and dozens of patients a day with the same disease to forget the fear that the patients have around that. So that's one part of it.

The second part is most elderly people who are you know, reasonable health and some who aren't. They want to be independent. They don't want to be dependent on their family. They don't want to be a burden to anybody in the thought of not even just becoming blind but the inability to loose their driver's license, you know, really get themselves around adds fear to that. And of course, then you have that other layer of the economics, the personal ecoomics. How much will this treatment cost me? And if I am still working, how am I going to be able to get out of work a half a day every month to get the treatments that I need to ensure that I can still work.

That is a whole 'nother layer. Not to mention, the doctor says, "by the way, I'm gonna stick a needle in your eye," and that produces a lot of anxiety amongst most normal people also.

David Hutton:

Let's talk a little bit about the disproportionate impact in rural areas with you know, the limited access to treatment and, access to doctors and they have to drive hours to see a specialist. What kind of impact does that have?

Jay Duker:

So in general, the injections for wet macular degeneration are delivered by retina specialists in the United States. Many comprehensive ophthalmologists, especially those who trained in the last 10 years, are trained in delivering the injections. But not all of them choose to do that. And so if you live in an area where there's not a large city nearby, chances are you're going to have to drive to find your retina specialist. It can be very inconvenient, it can require a lot of effort.

And during, you know, if you're in a northern climate during the winter, you may miss a visit, because of weather related issues. I guess you could say that anywhere in the country, though the weather might be different in Texas than it is in Minnesota. But yes, so those kinds of things happen. You can get sick, you can miss a visit. And then the worry that the missed visit is going to lead to irreversible severe visual loss adds to the anxiety. Obviously, if you live around the corner from your retina specialist and you can walk to their office, that's really not a big, big problem.

You are 3 hour trip away and your family member needs to take time off to drive you. It is a big problem. Now, the disproportionality based on where patients live and where the doctors are available, that's a hard one to solve.

Although, diagnostically we didn't even go into that we were talking more about treatment, but making the initial diagnosis of what macular degeneration – by the way, it is very important to make the diagnosis as early as possible, because there's a lot of good evidence when the blood vessels that are leaking are caught early. While the vision is still good, it's a much higher chance to preserve the vision in the long term. So early diagnosis is critical here. and that's another problem.

If your routine eye doctor is an hour away and you've got a little bit of distorted vision, you might say maybe I'll give it a couple of weeks before I bother them. Versus the ability to get in to somebody because you live in an urban area and it's quite convenient to just get in there. So even the visual loss that can result from the economic and societal barriers to getting into a doctor from a rural area are tremendous.

Now, to anticipate the next question – What can be done about it? The good news is we are getting far along with remote diagnostics in retina. More specifically, there are photographic machines and forms of optical coherence tomography or OCT, which can be done in the home. And those devices I believe in the next 10 years are really going to revolutionize the way we diagnose retinal disease and other diseases like glaucoma, for example.

And really provide the opportunity for those in underserved areas in rural areas to get diagnostic testing, even outside of a specialist's office that enables them to get an early diagnosis and direct them towards the best treatment.

David Hutton:

You touched upon early diagnosis quite a bit there. Is this an opportunity for some sort of co-management between ophthalmologists and optometrists where maybe...

Jay Duker:

Already exists! I think everywhere in the country that already exists. It's an excellent opportunity, because for the most part, optometry does provide a lot of the primary eye care. and I mentioned optical coherence tomography or OCT You have been working with it for over 30 years. And at the beginning it was a research tool. And then it was an expensive tests that only retinal specialists have.

Now every comprehensive ophthalmologist, or practically every optometrist in United States has a machine or access to the machine, they can all make the diagnosis of wet macular degeneration with experience quite easily. And pretty soon there's going to be a software in that machine that enables the machine to make the diagnosis. The OCT has now broken out into the larger medical community.

Neurologists especially have them in their offices, and I think you will see increasingly lower endo CT in home OCT provide that type of diagnostic testing at point of service in an internists office, in the local mall, or even in patients homes.

David Hutton:

So basically, does this come down to educating patients so they they are up on this and can help with early diagnosis. Visit your eye doctor, your optometrist more frequently to ensure that you don't suffer vision loss that is irreversible.

Jay Duker:

I think the first part, both are important. But the first part is, the really important part is educating people over the age of 60 – What are the symptoms of macular degeneration?

Which are primarily trouble with reading fine print, distortion, straight lines looking crooked, blind spots, gray areas, and if any of those occur suddenly that they need to be evaluated by their eye care professional right away. That is really paramount. The second part about earlier visits, you know, interestingly, if you have a disease that you're not at high risk for. Or such, as you know, let's suppose you're screening for macular degeneration, but you're screening, a person who has no high risk characteristics for it.

Screening them more than once a year probably doesn't do any good. On the other hand, if you have someone who's been identified with high risk characteristics, lesions in their macula like drusen, for example, or pigmentary changes, or macular degeneration in the fellow eye. And we know they're high risk, then it makes sense to screen them for the disease to try to catch it when it's asymptomatic prior to them trying to diagnose it themselves with the symptoms.

David Hutton:

And lastly, let's talk a little bit about the impact on patients who are on Medicare [or] Medicaid, and may be higher risks for loss of follow up.

Jay Duker:

You know, so again, the population in wet macular degeneration in the United States is almost entirely a Medicare population. And so that's generally the the older population that we're dealing with.

There's some pretty good data out there, that missed visits really matter when you have wet macular degeneration. There's a study that was done out of the Cleveland Clinic, where they looked at during COVID. Patients who had wet macular degeneration and diabetic macular edema and missed visits because of the COVID crisis and missed injections as a result. And they found that even a single missed injection could result in permanent decreased vision that was not recovered when the patient started to get their injections again.

So missed visits, due to whatever reason; economics distance, lack of a social network, sickness in the patient, that can impact, absolutely, the long term disease. So that's not a simple solution. You know, having a network of retinal specialists to do injections in more rural areas would not be easy, would not be cheap. Trying to improve those type of transportation issues, I think is something that society may want to look at, given the high cost of blindness in all populations, but especially in the elderly.

David Hutton:

Maybe something we didn't really touch upon looking to the future. Where do you see AMD treatment going in the next 3 years?

Jay Duker:

Well, I kind of mentioned, one of my biases already is that point of service and home diagnostics are the wave of the future, not just in retina, but in all of ophthalmology.

Our specialty really lends itself to these type of diagnostics, in the ability – you know, the technology is there now. It's how do you scale it? How do you design it so that it's beneficial to society and the payers, whether it's government or insurance sees the benefit to roll it out as well. That's a little bit more complicated.

From a therapeutic perspective, I think longer acting therapies, that act longer than just a month or two is the holy grail of wet macular degeneration treatment. And there are many companies in many approaches, including higher doses of the medications that we use now. Small molecules sustained release devices, as my company is working on, and gene therapy, which has the hope of being almost a one and done treatment.

Where you could inject a gene therapy in the office or in the operating room to a patient and potentially be finished with the wet AMD therapy after that. So there's a lot of interest in this. There's a lot of research going into it. In the next 3 years, I think you're going to see higher doses of some of the approved medications that become available. Some of those other therapies I think are probably a few more years away.

David Hutton:

Great, great information. Thanks for listening to this episode of EyePod by Ophthalmology Times. If there are topics you would like to hear about, let us know. You can also stay connected with us on Twitter, LinkedIn or Instagram. We'll see you next time.