New Retina Radio

07.08.26

Barriers to Care, Patient Education, and Treatment Decisions in Geographic Atrophy

What stands between a patient with geographic atrophy and consistent, effective treatment? And how do clinicians bridge that gap? In episode 3 of the GA in Practice miniseries on New Retina Radio, moderator Geeta Lalwani, MD, and panelists Murtaza Adam, MD, and Carl Danzig, MD, address injection burden, insurance hurdles, and the role of patient education tools in supporting adherence. The group also weighs the potential for AI to guide treatment decisions and track progression, then works through a hypothetical case of an 82-year-old caregiver with bilateral diffuse trickling GA who is not yet motivated to pursue treatment.

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Geeta Lalwani, MD (00:12):

Hi, my name is Geeta Lalwani and welcome to the final episode in our three-part miniseries on New Retina Radio called GA in Practice. I have two guests with me today, Dr. Moo Adam from Colorado Retina Associates.

Murtaza Adam, MD (00:24): Thanks for having me, Geeta.

Geeta Lalwani, MD (00:25):

And Dr. Carl Danzig from the Advanced Retina Institute in Bonita Springs, Florida.

Carl Danzig, MD (00:29): Thank you.

Geeta Lalwani, MD (00:30):

So in episode one, we discuss clinical biomarkers. And in episode two, we discuss data and personal experience that has helped us guide towards earlier treatment. In this episode, we're going to discuss how to ensure patients receive the care that they need and some of the barriers to treatment that have helped us evolve our understanding of treating geographic atrophy. A housekeeping note, if you haven't done so already, go check out our case presentations on the Eyetube. You can find the series under the same title GA in practice. So Carl, what are some of the common barriers to geographic atrophy care when it comes to, let's start with injection burden?

Carl Danzig, MD (01:09):

So injection burden with GA can be hugely problematic for patients. These patients are generally more senior. They have other medical problems. They have mobility issues and they commonly have transportation issues. Furthermore, they may be alone in life at this age, unfortunately. And they're afraid that they could be losing their independence. So there's a balancing act here. How often are we going to be treating them when we start? I generally start with monthly in the beginning and then recognize fully that it's not going to be monthly long-term, but it is a challenge for patients. Then we have to talk about insurance. So many patients are on an insurance plan that is not Medicare. They may think they have Medicare and they have some Medicare advantage, which may really be a disadvantage. Let's be honest, guys. So the authorizations is an issue. And the copay requirements, life is more and more expensive every year now and these patients are on a fixed income. So there's a lot of stuff going on. But in the end, I still try to tell patients there's hope and this is providing hope that we can preserve their vision longer.

Geeta Lalwani, MD (02:20):

So Moo, how do you tell patients that? How do you educate patients in an efficient manner? We all are busy clinicians and we're racing through patients. This is a fairly complex disease and the treatment for me, I find even more complex to make sure they have a good understanding of what we're trying to accomplish and what we're not.

Murtaza Adam, MD (02:40):

Yeah, you can't do it alone. So you need to repeat the message over and over again. I often rely on my technicians after our initial conversation to then kind of summarize everything, bring some pamphlets in. There's great educational materials from both Apellis and Astellas that we can use to educate patients on the impact of treatment. And then in our practice, and I think this is true for many practices around the country, we use a continuous care program where the patients that have chronic retina disease have a coach that can call them on a monthly or every other month basis and really review things in terms of their diagnosis, their treatment options, their current treatment plan. And I've found that actually that really helps with maintaining adherence and uptake when you see these patients. In the end, this is a really complex thing to explain in the average three to five minutes that we see these patients.

So between all these interventions, we can work together. I should mention too, family's important, family or friends, another person in the room to help be that second set of ears. So to reinforce for that patient, this is what the doctor said because a lot of times you mention the words macular degeneration and patients sort of just, they get a blank stare and they kind of lose you after that, at least the first visit.

Carl Danzig, MD (03:49):

I agree completely. And having the patients understand that the family understand, the brochures help, the videos help, the commercials help. We see Henry Winkler on commercials. We see the slow rider. And then we see that doctor with the great hair and the nice shoes on the golf course sometimes with his patient. And that's Dr. Khanani, our good friend. He appears on my television and on my Instagram for Isurvey. But all of this is just bombarding the patient in a good way.

Geeta Lalwani, MD (04:19):

I agree. I think I had mixed feelings very honestly about commercials, but what I do realize is that it has made an impact on patients' awareness of the disease. They come and they ask if they have GA and they use that slang, if you will. And I'm always impressed that patients have actually heard these commercials. And that's of course because it's targeted to nightly TV, which is their patient demographic. And so I do think that market permeation has really helped with this. The other thing that I like a lot is both of these companies, Apellis and Astellas have really great educational materials. They have those tear-offs that show the progression of the GA in maybe five different timelines. And I often just circle where I think the patient is and what their vision is and what's to come. So patients to understand what their progression looks like, whether that's for planning purposes or whether it's to try to preserve their vision for a longer period. How do you present options in a fair and thorough manner, Moo, while it's still ensuring that the patient has agency in making their decisions?

Murtaza Adam, MD (05:22):

It's interesting. I think patients come in with different attitudes and it's widely varied. I have some patients that come in and they say, "I want this drug or that drug." They've come in with a conviction. And I think in fairness to the retina community and the clinical trials that have been done, both medications that we have available, both pegcetacoplan and ACP have merits. And the hard part is we don't have any clinical trials that compare one head-to-head. They're also very differently designed trials. So we have data to guide us, but in the end, it's in our hands how we decide what to treat with. And so if a patient comes in and says, "I want ACP or I want pegcetacoplan," I'll go down that path. I have no problem with either drug. But if a patient comes in and says, "I have a history of uveitis and I'm really concerned about inflammation," I might not pick pegcetacoplan as my first line.

If a patient has a high-risk lesion, I may consider the clinical trial data. The Apellis studies were larger and somewhat more robust, so I have greater confidence in the treatment effect. In a patient at particularly high risk for short-term vision loss, I might choose pegcetacoplan. It is challenging, and I do not think there is a single right answer. The key is to do something rather than nothing.

Geeta Lalwani, MD (06:34):

I think that alludes to what other tools do we want? And what I think about, and Carl, maybe you can comment this, is AI. I mean, this seems like such the perfect disease model to have AI present to help us guide our treatment effect and try to determine which patients would benefit from treating earlier and which patients we could perhaps hold off on. What are your thoughts, Carl?

Carl Danzig, MD (06:54):

I think that's the wave of the future, Geeta, and I think AI will be entering into our offices sooner rather than later. In terms of which patients are going to progress sooner, I use those biomarkers in autofluscent photos. I'm not sure I need AI for that, but I do think AI can really help identify patients that could be in a clinical trial, identify patients and their progression rates. So if we use AI to measure what the progression rate is or maybe what the progression rate could be, if they could maybe extrapolate based on risk factors, kind of the way the weather radar map goes, like what it's going to be like 48 hours from now, just look at the Denver forecast.

Murtaza Adam, MD (07:34):

We have tons of models that have been published about predicting GA progression rate. The challenge is like the interoperability. If you do that on a Heidelberg, that AI model will work great. But if you do it on a Zeiss, suddenly the model falls apart.

Carl Danzig, MD (07:46):

Right. We need better partnership with the AI companies and the imaging modality companies. And that way, hopefully we can still bring it back and help our patients more.

Geeta Lalwani, MD (07:54):

It would be nice to also be able to show the patients what we have accomplished in reducing the rate of progression by treating them. So I think we'd have more support for the patient.

Murtaza Adam, MD (08:04): Or if a patient's not responding, then making a treatment switch.

Geeta Lalwani, MD (08:06):

Sure. That's a very good point. Well, let's take a quick break and when we get back, we'll continue our discussion. Stay tuned. All right. So let's get back to our conversation. So I have a hypothetical patient I'd love to discuss with both of you. This is an 82-year-old mixed race woman who presents following a referral from an optometrist who manages her dry eye disease. She's had cataract surgery in both eyes with monofocal lenses 10 years ago. Her color fundus photos show some lesions in the periphery, but these lesions align with fundus autofluorescent findings of diffuse trickling lesions. Her vision is 20 25. She's not complaining about vision problems. She is a primary caregiver to her spouse who's home bound and she herself has a lot of comorbidities. She expresses concerns about her own schedule and whether or not she'd be able to get into any appointments, let alone chronic treatment. So obviously this scenario is rich with real world complexities that we deal with all the time. Her comorbidities, her primary care, how are you going to discuss her disease? And do you think in fact it is early disease?

Murtaza Adam, MD (09:22):

Yeah, you make such a good point that the case is sort of a setup to step back and say, is this truly age-related macular degeneration? Not to say that patients that are non-Caucasian or non-Asian can't get AMD, but your spidey sense goes off. And so if you look at data from people like Kenny Fann in Houston, 20% of patients that are diagnosed with AMD in fact actually have an inherited retinal disease that's a maculopathy. And so I want to make sure that they have distinct findings of drusen. I want to make sure that they don't have pachychoroid spectrum disease. And I really want to take a look at the pattern of autofluorescence or the pattern of RPE changes on the infrared to make sure this isn't something else like a pseudophatelloform dystrophy or something that could mimic your standard age-related macular degeneration.

Geeta Lalwani, MD (10:07):

Yeah Moo, you bring up great points. Let's make sure we have the disease correct before we jump into treatment. Let's assume that we do have the disease correct. Let's assume this is early macular degeneration. What are you going to talk to her about, Carl?

Carl Danzig, MD (10:21):

Okay, let's take a step back. This is a fantastic case for discussion. So are we saying this patient has GA? Yes. Okay. So then we're saying that she has the advanced form of the disease and we need to let her know that this is not what she was referred for, for early AMD. This is advanced stage. And then do both eyes have it?

Geeta Lalwani, MD (10:40):

Both eyes have it and she has a diffuse trickling appearance on the fundus autofluorescence.

Carl Danzig, MD (10:46):

And we confirm that this is AMD and not some IRD or pattern dystrophy or some other zebra. This is just run-of-the-mill dry AMD with GA. This is a patient that I would tell and say, "I really understand all that you're going through and all that you have on your plate right now is the sole caregiver for your family. I can't imagine what that's like, but I want you to be able to have that ability as long as possible." And I would explain to her that the time of sitting on our hands and doing nothing is over. By the time you got to this stage, it's advanced. We're not just sitting around and say, "Oh, we have a little bit." It's not like a mild cataract at age 58 that can wait another 10 years. This is someone that if we don't do anything, she potentially could lose vision. And then we start looking at the risk factors. Is it more rapid progression? Is she at risk of that? Is she at risk of not being able to care for her loved ones as much as she wants?

Murtaza Adam, MD (11:45):

On the airplane, they tell you to put your oxygen mask on before you help others. You have to take care of yourself before helping others. And that scenario is so common in people that are caregivers and the fear of not being able to care for their loved ones or someone that they are caring for, it really should be exceeded by the need for them to function in the long term.

Carl Danzig, MD (12:07):

There's also a cultural aspect to it, Mo, is that you said this patients have mixed ways. I don't know what her ethnic heritage is, but sometimes patients come with their own cultural history and concerns and being a caregiver is important in every culture, but some really -

Geeta Lalwani, MD (12:24):

Well, I'm going to chime in here and say it's way more common in women. Women are more commonly the caregivers. Speaking from experience. So I think it is. I mean, it really is. It's a burden that women often carry where they feel like they're caregivers. And so for me, I really would like to focus on her vision and what it does for her and allows her to care for, in this case, her husband as well as maintain her own health. And also the benefit of early treatment. I think that early treatment allows us to preserve her vision long term. But the educational piece here is incredibly important.

Murtaza Adam, MD (12:59):

I think it's really important to come to a patient and meet them where they're at. She's not particularly motivated at this time. So you have a conversation that you understand that they're busy, life is hard, but your goal as their doctor is to preserve their visual function as long as possible. And you want to see them back within a few months, four to six to reassess. And if things are progressing, you're going to have another conversation that, you know what? You're at risk of losing central vision within a few years. Let's do something about it.

Carl Danzig, MD (13:23):

Moo, you're completely correct here. I would probably bring the patient back in three months, but I would leave her on one note with one little nugget. I would tell her today is the best you're going to see for the rest of your life. Oh, that's scary.

Geeta Lalwani, MD (13:36):

Yeah, I agree. I think that I would lean towards really establishing a relationship with her so that you start to develop a trust relationship. That's exactly what you're alluding to that, hey, we are not going to make you better. We're trying to reduce -

Carl Danzig, MD (13:48):

Today's the best you're going to be. Come back in three months. If you want to come back sooner, great. If not, we'll talk about it in three months.

Murtaza Adam, MD (13:53): Yeah.

Geeta Lalwani, MD (13:53):

Absolutely. Well, that's a wrap for this miniseries. And that last case really demonstrated why in the treatment of GA, it's important that one size does not fit all. You need to know your patient, you need to understand the data, you need to understand the disease, and you have to be able to communicate with clarity and empathy as this case demonstrates. Be sure to watch our case series on Eyetube under this series titled GA in Practice. I want to thank my colleagues and friends, Carl and Moo, for joining me in this discussion. I'm Geeta Lalwani. Thank you for listening.