MICHAEL BUCKLEY: Good afternoon. I’m Michael Buckley with the BrightFocus Foundation, and welcome to today’s BrightFocus Chat, “Ask a Retina Specialist.”
If you’re new to these Chats, I’ll give you a brief background. BrightFocus Foundation is a nonprofit organization that funds some of the top scientists in the world working on cures and better treatments for macular degeneration and glaucoma and Alzheimer’s, and what we do with today’s Chat—in our series of Chats—is to offer you an opportunity to hear directly from some of experts in this field, learn the latest research, learn the latest best practices, have a chance to ask any questions.
Today we’ll be having a conversation with a leading retina specialist. It will go about 40 minutes, and we’ll also have opportunities to take some of your questions. Let me tell you about today’s guest. Her name is Dr. Gayatri Reilly. She’s with The Retina Group of Washington, D.C., and she’s a familiar voice, been with us a number of times over the years. Dr. Reilly is a retina specialist, and she’s been recognized for outstanding patient care and research and community service, so it’s wonderful to have you back, Dr. Reilly.
DR. GAYATRI REILLY: Thanks for having me back. It’s always a good time to have a conversation and always happy to be back to answer as many questions as I can.
MICHAEL BUCKLEY: Since the title of today’s Chat is “Ask a Retina Specialist,” we’ll start right there. What is a retina specialist?
DR. GAYATRI REILLY: A retina specialist is an ophthalmologist first, so we’ve gone through medical school, our intern year, as well as ophthalmology training, and then beyond ophthalmology training, it’s two additional years to be a retina specialist. Your retina is a very specific portion of the back portion of your eye that processes your light and information to send to your brain, and there’s a variety of conditions that can impact the retina—things like diabetes, you might have heard of macular degeneration, retinal detachments—and all of these conditions can be treated surgically as well as medically, and that’s basically what we do as a retina specialist.
MICHAEL BUCKLEY: I think all of us are familiar—for better or for worse—about how our body ages and the wear and tear of time. I was wondering, how does the retina age? And, I guess, big picture: What’s the difference between … how can someone know the difference between normal aging of their eyes versus age-related macular degeneration?
DR. GAYATRI REILLY: I’m really happy that you asked this question because this is a question I get from my patients a lot, and actually a lot of times, my patients will be like, “Oh, well I’m just getting older, so this normal.” And so, the difference between normal aging versus macular degeneration—aging can impact a lot of different portions of the eye.
You may have heard of cataracts, which is when the lens in your eye gets cloudy. That is something that’s age-related, and that can cause difficulty with driving at nighttime, driving distances, and that’s typically what we think about the most when we think about just getting older and difficulties with seeing, and it’s usually related to cataracts.
Macular degeneration is also considered age-related, and what happens there is that your central vision undergoes changes that start to have waste deposits that actually collect there that, in the early forms, don’t actually cause any trouble with your vision. And so, you shouldn’t expect to have any trouble with your vision in the milder, earlier forms of macular degeneration, which makes seeing your optometrist and seeing your general ophthalmologist that much more important.
MICHAEL BUCKLEY: I know that the researchers that BrightFocus funds around the world on vision disease, they tell us this is one of the most exciting times ever for vision research, and there’s a lot of exciting progress going on. Could you tell us a little bit about some of the new treatments that are coming out and what we should know about them?
DR. GAYATRI REILLY: This is one of the reasons why I enjoy working with BrightFocus is the dedication to research, and retina is one of the fields where there’s always innovations happening for learning about diseases better and improving treatments. It’s hard to imagine that just back in 2004 was our first treatment for wet macular degeneration, and since then, it’s changed so much over that time. We’ve developed newer treatments that have been better than before in terms of improving visual acuity as well as decreasing the frequency of visits to the office. As we know that with macular degeneration, particularly wet macular degeneration, it’s quite … it takes a lot of toll, both for the patient and family, if they’re coming to monthly visits, and some of the … each new medication that we’ve gotten as a treatment has lasted just a little bit longer to try to decrease the frequency and burden to the patient in terms of returning, while still having very good efficacy and still working very well at maintaining vision.
It really is an exciting time in retina for wet macular degeneration. There was just recently a newly FDA-approved medication just at the end of last year for wet macular degeneration, and we still are just starting to use it in clinical practice. Just as there’s any new medication, you want
to see how it works and make sure that there’s no significant side effects, and we’re always very careful and roll these things out slowly. But there is newer medicine for wet macular degeneration in the form of an injection, which is what patients have traditionally experienced, but there’s also a new treatment that is a surgical treatment, which is the very first surgical treatment for wet macular degeneration that we’ve had, where we can potentially decrease the need for injections in the office, and that’s a completely different classification of how we have ever thought about how to deliver medication to the eye, so that’s been very exciting for us.
MICHAEL BUCKLEY: How should patients ask their doctors about this? Are there any specific product names or classes of medicine that they should mention when talking to their doctor?
DR. GAYATRI REILLY: For wet macular degeneration—and these are the two things that I was just talking about—the new medicine is called VABYSMO®, it’s V-A-B-Y-S-M-O, and patients can just ask their treating physician about what their opinion is, and have they had any experience with the medication yet? Like I said, it’s just kind of up and coming now; also, there’s definitely just more and more information that we’re all learning as physicians about the medicine. And then, the second medicine that is the surgical implant is called SUSVIMO™—S-U-S-V-I-M-O—which, like I said, is very, very new to us because we’re just learning that we can deliver medication to the eye in a different route, which is in the form of a surgical implant instead of an injection every month. So, it’s always a learning curve for both physicians as well as the patients, so I think it would be just wise to ask their treating doctor just what their opinion is on these newer medications. And, appropriately, I think most of us as a retina community are always very cautious in terms of new medicines and want to make sure that the safety is there as well as working as well with what’s already been established.
MICHAEL BUCKLEY: Thank You. The new treatments that you mentioned, are those … this is a very broad question here, but are those generally covered by insurance?
DR. GAYATRI REILLY: Yes, so because they are FDA-approved, they are covered by insurance, but there are so many different insurances out there that, traditionally, the office from your treating physician will investigate your benefits and make sure that, prior to you receiving this medicine, that you would be covered without any expected out-of-pocket costs. Each insurance is different, but because it is FDA-approved now for macular degeneration, as well as for diabetes, most insurances are covering it. But like I said, it always is wise for each individual insurance to be … you need to have that double-checked and make sure that it’s covered first since it is a newer medicine. But so far, so good. The insurances that we’ve been working with have been … have not had any issues.
MICHAEL BUCKLEY: Thank you. We have a listener question while we’re still on the topic of treatments. Any tips for people who get anxious before getting an injection, which seems to me like a reasonable concern?
DR. GAYATRI REILLY: It is completely reasonable. The worst thing for me as a physician is, for whatever reason, the patient wants to come back for the injection because there’s so much anxiety that will happen. They’ll lose sleep over thinking about an injection when, in reality, with proper technique and our numbing protocols, it’s really not worse than just having your blood drawn. So, some tips about if you’re anxious is to mention it to your physician that this is how you’re feeling. What in particular is the concern? If you’ve had an injection and you feel like it’s been painful or you feel like you’ve had a lot of irritation, it always helps me to know what’s been the problem or if there has been anything that’s making the situation worse for you because maybe it’s as simple as giving you a little bit more time for the numbing to work for you. So, the communication is so important to just mention it. I think all of us as retina specialists expect that there’s some degree of anxiety with an injection to your eye, and my first … for somebody who’s never had an injection, it’s always that, you know, you’ll leave and you’ll say, “Oh, was that it?” because in your mind you can’t help but think of the worst-case scenario. But if you do get frequent injections and you still continue to get anxious about it, and if there is something in particular that you’re experiencing with it, I would definitely encourage you to open the dialog and mention what you are anxious about to see if there’s anything that we can do on our end to make that a little bit better.
MICHAEL BUCKLEY: That’s great advice to have that open line of communication. We have a few questions, Dr. Reilly, about moving forward, living with AMD, and several people have a very core question of what can they do to help retain their vision?
DR. GAYATRI REILLY: Macular degeneration is tricky. The part of the name does imply that it is a degenerative condition; however, it’s so variable. Some patients can maintain excellent 20/20 vision for the rest of their life with macular degeneration, both the wet and the dry form. Other patients can have a more severe form of the disease and are not able to see as well with both forms of the disease. So, the best thing to do about retaining your vision is understanding what … how your macular degeneration is in your eye because there’s so much variety. The worst thing for me is to have a different expectation than my patients, so I’m always … it always is humbling for me when a patient just out of the blue is worried about them going blind when that is the farthest from my mind because I think they have such a small chance of losing vision. But clearly, we’re not on the same page, and it’s kind of humbling to think that “Oh, gosh, this patient’s losing sleep because they are worried that they’re losing vision,” whereas I have almost no concern of that. So, I think the best thing to do is really understand the level of severity of the disease for you, again, by just talking with your physician, and then see if there’s anything that they recommend, whether it’s … we’ve talked about this in other BrightFocus Chats about the vitamins for macular degeneration, about monitoring at home with an Amsler grid—things that we can potentially do to bridge the time in between follow-up appointments.
MICHAEL BUCKLEY: You mentioned a couple of things in that answer that we’ll go in and give a little more detail about. First, an Amsler grid—can you tell us what it is and how do people use it, and why it’s important?
DR. GAYATRI REILLY: An Amsler grid is basically a piece of graph paper that we’ve seen all our lives, and within the graph paper, right in the center, there’s a black circle. And basically, how you use it is you hold it, basically, about 12 to 14 inches away from your eye, which is your standard reading distance. You close one eye—it’s very important that you’re testing each eye individually—and you focus right on that center black dot. And what you expect to see is everything looking like a nice 90-degree perpendicular line with no wave to it, no distortion, and it should be just a nice sharp line; and then you would do the same with your other eye, expecting it to look similarly. And if there is ever a change, depending on how frequent your doctor recommends that you check it, if you’re checking it … a lot of times we keep on our refrigerator, so you’re passing by getting a snack, you just test your eye really quickly. If you ever see a change from your normal, that would be a sign that you should definitely alert your physician that something has changed.
MICHAEL BUCKLEY: That’s great. The other point you mentioned in your overall answer a minute ago was the vitamins. I know many people find that section of the pharmacy or the supermarket a little confusing and a little expensive. Tell us what the best vitamins somebody should have for vision health, particularly with AMD.
DR. GAYATRI REILLY: I always, again, would have you ask your physician first: Do you need to take vitamins? Vitamins are supplements, so a lot of times if you’re having a healthy diet, green leafy vegetables, which can be enough for your eye health. However, if your physician feels like you would benefit from what we call eye vitamins, they are special vitamins that have a formula that’s called the AREDS2 formula—A-R-E-D-S-2—which contains the exact vitamins that have been recommended to help reduce the risk of progression in patients who already have macular degeneration, to decrease the risk from going from what we call dry macular degeneration to wet macular degeneration. So, there was a huge study—and there’s actually been two versions of this study—done by the National Eye Institute looking at: Who needs these vitamins. If I don’t have macular degeneration, do these vitamins help me? Or, if I have really, really mild macular degeneration, do the vitamins help me? And in those two studies, the answer was no, so it wasn’t really helpful in a prophylactic way, but if you already have what we call intermediate dry macular degeneration, those are the patients that benefit the most with vitamins. And this formula you can get, as you mentioned, over the counter—you don’t need a prescription—and one of the common brand names of it that you might see at the grocery store is PreserVision®, and it has … what you’ll see right under it is a formula that says AREDS2 formula, and that’s the specific formula that’s been studied in the clinical trial to decrease that progression from dry to wet macular degeneration.
MICHAEL BUCKLEY: Thank you. Another question we have about the care—monitoring your eye health in between visits—is: What if you find your lighting or your need for lighting changes? You find that you’re starting to need brighter light to do things or maybe you’re picking up a glare that you didn’t used to off of a magazine. Does any of that … is there significance in people noticing changes like that in between visits to their eye doctor?
DR. GAYATRI REILLY: That is significant because that’s the portion of the fact that macular degeneration continues to progress as a degeneration. So, even if you don’t need any special treatment for macular degeneration but you have the disease, that is something we see over time, that most of the time needing … you will need brighter light to see as well as you used to see 5 years ago. In addition to brighter lights, sometimes it helps to make things a larger print as well, and that’s the unfortunate portion of macular degeneration that we don’t have good answers for; we also don’t have good treatments for. So, even if you’re still seeing 20/20, there’s a good chance that as you continue to live with macular degeneration, you might find that need to see a little more light, and that would be sign that the degeneration is continuing to progress, so it is important to mention that on your follow-up visits to make sure that that’s not a suggestion that something else is happening in the eye, too.
MICHAEL BUCKLEY: That’s a great point. I know you mentioned progression. Maybe this is a super broad-brush question, but when you patients ask you how quickly or slowly AMD progresses, what’s your general basis on answering something like that?
DR. GAYATRI REILLY: That it really varies. I hate to say it, and I would love to be more specific for my patient, but that’s where I really encourage the follow-ups because, you know, it’s not to push off the question, but when I have 2, 3 years of data and seeing the patient every 6 months over that time period, I have a much easier time to answer that question. I can say specifically for that patient, “You know, what? In the past 2 or 3 years, I haven’t seen much progression at all. It remains very stable, so my concern for you is that it’s probably going to spread or progress that fast.” But for another patient, you know, 6 months can have a very different rate of progression. And so, that’s where the genetics of macular degeneration come into play. We have only the beginnings of understanding all of it now, and I certainly don’t think we have a full grasp of it all, but you can take 10 patients all having quote-unquote “intermediate macular degeneration,” and they can all have a completely different progression over 5 years. We have some idea of things when we see certain criteria on our examination. We have some ideas of some higher-risk characteristics and some lower-risk characteristics to give a patient a little bit of a ballpark idea, but it really helps to have follow-up visits to kind of dial in for that specific patient.
MICHAEL BUCKLEY: Great advice. We have several questions today about cataracts, and I want to take this in two directions. Basically, do cataracts cause AMD or does AMD cause cataracts? And how do they interact in terms of possible treatments for AMD and surgery for cataracts. How do the world of cataracts and world of AMD overlap?
DR. GAYATRI REILLY: They’re similar in that they’re both age-related conditions. As I mentioned really early on, we know cataracts; when the lens gets cloudier, it’s something that happens as we get older. Macular degeneration, again, is also age-related, so a lot of patients have both. They have macular degeneration, and they have cataracts, and this is where a lot of confusion sits because before we thought that cataract surgery was something that we would … that could make macular degeneration worse, but thankfully, with a lot more research and a lot more information now and better techniques for cataract surgery, we no longer feel that that is the case. So, neither one causes the other. The cataracts don’t cause macular degeneration. Macular degeneration doesn’t cause cataracts. They just tend to run together in a specific patient, and taking care of the cataracts with surgery does not increase your risk of either developing or worsening the macular degeneration as well. So, what I usually recommend for patients is it helps to have an idea, and a lot of times cataract surgeons will want an opinion. It gets hard to know what’s making the vision worse. Is it the cataracts? Is it the macular degeneration? Will removing the cataracts with surgery help or not? So, the best thing is to, again, find out for your eye what’s causing your difficulty. Some things that we know are more typical of cataracts, like difficulty driving at nighttime or seeing a lot of halos around bright lights; those are typical cataract symptoms. But a lot of times if you have both, it’s important to figure out what’s worse, you know? What’s really causing your symptoms? And if we can do something about the cataracts, will your vision improve and what your expectation is?
MICHAEL BUCKLEY: Those are very helpful points. And I just want to do that kind of same question structure about dry eye. Does dry eye cause AMD? Does AMD cause dry eye? To an outsider, dry eye sounds a lot like dry AMD in your eye. I was wondering what connections or causalities are there, if any?
DR. GAYATRI REILLY: They have nothing to do with each other as well. So, this is where the eye gets a little complicated, and a lot of times patients wonder how are there so many specialists for something as small as the eye? Dry eye impacts your cornea. Your cornea is the very, very front surface of your eye. When we feel like something’s in the eye, you might feel like it’s scratchy or irritated or that it’s like a gritty, sandy feeling. Those are symptoms of dry eye, which can be improved almost immediately with putting lubricating eyedrop, something over the counter like Refresh or Blink® or Systane® eyedrops, and you usually feel a pretty immediate benefit from those symptoms with using an eyedrop. Macular degeneration, that impacts your retina, which is the backside of the eye, so neither one typically is related to the other, and unfortunately, that’s also why all of our treatments for macular degeneration involve an injection because we can’t use eyedrops to work on that portion of the eye.
MICHAEL BUCKLEY: Thank you. And one last question kind of on that realm we got from a listener. I’m wondering … statin drugs. A lot of people in the AMD age bracket take statin drugs. Is there anything that they need to know or be concerned about, either in a good way or in a way of concern?
DR. GAYATRI REILLY: This is something that has been really researched a lot over the past few years for the reasons why you mentioned because so many patients are already on these
medications. It’s been really disappointing for us to not give a better answer as to whether statins play a role. Initially, there was a study that suggested that perhaps using statins, there might have been a small reduction in the risk of going from dry to wet macular degeneration, and almost also they found a smaller … or a decrease in some of the findings that we see with dry macular degeneration, but this hasn’t really been reproducible. So, in other trials looking at things similarly, they haven’t been able to find that. So, it’s one of those things that we’re still working on to try to understand a little bit better because the reason why these things are kind of linked is because—you may have heard of drusen, which are the findings of dry macular degeneration—a lot of the drusen can, kind of, have some components of cholesterol in them, so it’s still something we’re investigating, still trying to have better answers to, but right now, it’s not something that we would recommend as, “Oh, you have macular degeneration; you should or should not be on a statin.” So, there’s still a lot more information to come from that.
MICHAEL BUCKLEY: Thank you. We have time for a couple of more questions. A few listeners are wondering, what can they … they obviously don’t want their children and grandchildren to get AMD. Is there any advice that people can share with their kids so they don’t get AMD?
DR. GAYATRI REILLY: Avoid smoking. We know that macular degeneration and smoking are really… really don’t go along well, so that’s the first thing I usually tell parents is to definitely have as much avoidance of smoking as possible. The second thing is we know there’s an increased risk in children, so having a healthy diet of green leafy vegetables. They have a lot of antioxidants that have been shown to be protective for your macula. It doesn’t mean that it will prevent macular degeneration, but we do know that it’s been supportive to at least keep your macula as healthy as possible; and then I recommend just being monitored for it, so the more proactive we are … I usually recommend children over the age of 50 to be evaluated for macular degeneration, specifically, because a lot of the earlier questions, it just has to do with what our expectations are, so if we catch it early, we can at least have better guidance and better monitoring of the disease. So, those are the three things I typically have to suggest is to have a healthy diet—green leafy vegetables; dietary omega-3s in the form of, like, seafood—fish is also very helpful; avoiding smoking; and then for monitoring to start over the age of 50.
MICHAEL BUCKLEY: And on that vein, a very broad question: Is AMD genetic? A lot of folks see ads on TV for things like 23andMe and other testing. Is there anything that we should know or do in the genetic, inherited angle of all this?
DR. GAYATRI REILLY: AMD is definitely genetic, but with everything that’s genetic that we hear is complicated because, you know, even if you have the higher risk genes for macular degeneration, you can take two twins, and one would develop it, and one doesn’t, so there’s also other factors that come into play besides genetics. But the tests like 23andMe does look at common variants that are associated with an increased risk of developing the condition, but, again, I would emphasize that it doesn’t suggest that you will definitely have it. It doesn’t tell
you whether you’re going to develop a severe form of it or not. So, it’s really hard to know what to do with that information right now when it comes to genetics because there are definitely some higher-risk genes that are implicated for macular degeneration, but we can’t do anything prophylactically except for just monitoring, so in that respect, it’s helpful, so that knowledge … there’s so many other factors that can still impact for that particular person, whether they actually develop the disease or not.
MICHAEL BUCKLEY: Thank you. Dr. Reilly, before we turn to some concluding remarks, we want to say thank you so much for being a guest today and over the years. A concluding question I’d like you to address is going to see your eye doctor, these things can get a little overwhelming sometimes getting ready and getting there and the whole process and experience. What can we as patients best do to prepare and to have the visit go as well as possible? Do you have big picture advice and guidance to help this to be a very positive, productive experience for both the doctor and the patient?
DR. GAYATRI REILLY: Sure. I would just first and foremost suggest ask questions. The worst thing for me is, again, not being on the same page as the patient and to make sure that you have the time, you have the chance to ask the questions that you feel … that you’re concerned about. So, if you are concerned about … you can ask a broad question: Do I have anything that can cause me to lose vision? Are you concerned about conditions like cataracts, macular degeneration, glaucoma? These are all conditions that are easily confusable, and patients can have all three things. They can have one thing; they can have none of them. So, I would just really encourage asking questions, and don’t be afraid to just ask something as blunt as, “Are you worried? Are you concerned about anything for me?” because I think sometimes—I can speak for myself—that I can take for granted that everything looks great from my perspective; I have very little concerns. But at the end of the day, the patient might have some concerns, and they were more concerned about their thinking that they might lose vision when I don’t have those concerns. So, I would just really encourage patients to ask the questions that are on your mind because it’s always the most productive when both you and the physician are on the same page.
MICHAEL BUCKLEY: That’s great advice for something as important as vision health. I really appreciate you sharing those tips today about not only making the visit go well but all the information you gave us about new treatments and correlations with other conditions. I really appreciate that. So, Dr. Reilly, thank you so much. I think you’ve really helped people learn more and be more comfortable with managing their vision health.
DR. GAYATRI REILLY: Thanks for having me again, and if there are any additional questions, please don’t hesitate to reach out to me.
MICHAEL BUCKLEY: On behalf of our audience and BrightFocus Foundation, this concludes today’s BrightFocus Chat, and thank you very much for joining us today. Goodbye.