BrightFocus Foundation
AMD: Your Questions Answered
June 24, 2020
1:00 p.m. EDT
Please note: This Chat may have been edited for clarity and brevity.
MICHAEL BUCKLEY: I’m Michael Buckley with the BrightFocus Foundation. Welcome to today’s BrightFocus Chat, “AMD—Your Questions Answered.” If this is your first time at a BrightFocus Chat, welcome. Let me tell you briefly about BrightFocus and what we’ll do today. BrightFocus funds some of the top researchers in the world. We support scientists who are trying to find cures for macular degeneration, glaucoma, and Alzheimer’s. We share the latest news from these scientists with families that are impacted by these diseases; today’s Chat is an example of that. We offer a number of free publications and materials at our website, BrightFocus.org, and we’ll mention some of those materials today, but at any time, visit us at BrightFocus.org. Let me tell you about today’s guest. We have been very fortunate to have her several times over the years, and she’s been tremendously informative and very helpful for us. It’s Dr. Gayatri Reilly, and Dr. Reilly is an ophthalmologist at the Retinal Group of Washington—that’s Washington, D.C. She has been very helpful in the past, and we’re looking forward to having her back. So, Dr. Reilly, this is the first time you’ve been back since the pandemic. I’m wondering if you can just start off by telling us what’s changed.
DR. GAYATRI REILLY: Thanks for having me back. I am super-excited to update everybody and, hopefully, be here as a good source of answers to a lot of the questions that I’m sure listeners have that I’ve been hearing from my patients every day. I guess the best way of answering that is, “What hasn’t changed?” March definitely kind of turned upside down for us. In the Washington, D.C., area, we were kind of fortunate in that we were able to watch what was happening around the country—watching what was happening in Washington state and New York City—and we got the guidance of the American Academy of Ophthalmology and all of our societies that recommended for us to be rescheduling nonurgent patients. So, we actually never closed as a practice, and that is something that was a little bit different from my colleagues in general ophthalmology—mainly because of what we talked about in many other Chats before, that the urgency to patients with wet macular degeneration and the need for monthly injections for these patients to maintain vision. So, we made a lot of changes. We were very concerned about patients. We were very concerned about our staff and ourselves, understandably. So, initially, when things were sort of at the peak at the time, in terms of what we were seeing around us—plus what was happening in New York City, not too far away from us—we actually went to a system where we had basically half of our physicians working at a given time.
We’re a practice of 30 physicians, and we were fortunate in being able to use our numbers to our advantage. We wanted to be here. We wanted to be able to see patients who needed to be seen. We wanted to get patients in and out as quickly as possible, and we needed the time to be able to clean after every patient, before every machine that the patient has touched. We had to take time to clean all of our instrumentation and things, so we really limited our schedules. We were seeing probably 20 percent of what our normal practice was seeing in March, and we were quite happy with just being open and available for patients. And those were the patients we identified that we needed to see—the patients who needed to come in for injections—and we called our patients to let them know that we were open and available. And then we did incorporate a bit of a telemedicine, as well—and we can talk more about that—for patients who had questions and who are, understandably, having concerns about their visits, about their safety, how long they could avoid coming into the office, and what their expectations could be, so that was kind of what we did through March and April, and it really worked well for us. We were monitoring all of our technicians, our staff, to make sure nobody was having any symptoms. As far as … at that time, we hadn’t heard of any patients getting sick after they were in our office or anything like that, so we were able to kind of survive that first wave up through March and April.
And then in May, we started to just sort of go back to a “normal” schedule, meaning we allowed patients who were coming in for less urgent reasons to start to come back in, but we certainly have put a lot of focus on patient safety. So I’m sure we’ve all experienced in the doctor’s office that the waiting room is packed, and then you’re sitting in the waiting room for a while, then you’re sitting in another station for a while. We had to eliminate that for obvious reasons, so we set up our waiting room with just a few chairs, all separated by 6 feet apart. We asked patients if anybody was traveling with them and if they could stay in the car or if patients could stay in the car until we were ready for them. We limited our schedules so that we weren’t double-booked or anything of that sort, and we extended our hours to be available so that we could accommodate everybody.
MICHAEL BUCKLEY: That’s a tremendous amount of things you had to do on very little notice, and, yeah, we will discuss many of those points over the next half-hour or so. And just kind of a starting point, when people have been extended or are currently extended in terms of treatments, what do you tell them to look for? Any types of warning signs at home if there is a little bit more time between visits?
DR. GAYATRI REILLY: Number one, we’ve talked about the Amsler grid. We’ve talked about this before and how important it is for all patients who have either dry or wet AMD to be monitoring using the Amsler grid, and they were able to look out if there was any new distortion or waviness to their vision. We provided resources for patients who may not have had an Amsler grid where they could download one or they could print one out from, but more and more, we’ve noticed that patients have been using a lot of screen time. So, they had a lot more time to be reading the newspaper and reading things on the computer, so I was really asking patients to just periodically cover each eye and just make sure that things like the edge of your monitor, the edge of your laptop, still looks nice and straight; that there’s no waviness or distortion to it, so that kind of remains the mainstay of home monitoring for macular degeneration. And I do have some patients, and we’ve talked about the other home-monitoring system—the ForeseeHome device—and I had some patients who were using that, and that also provided some reassurance and some extra bit of ways of monitoring while we couldn’t see them.
MICHAEL BUCKLEY: Dr. Reilly, if somebody is using that Amsler grid or looking at their computer and things are wavy, what should they do then?
DR. GAYATRI REILLY: The best thing to do would be to call your ophthalmologist, so even though … at this point, certainly, all of the ophthalmologists are sort of working again, from my understanding, but everybody still had a responsibility for emergencies and could identify where patients could go, and we generally like to see these patients in the office, certainly within the first few days of noticing the symptoms, if we can.
MICHAEL BUCKLEY: And you outlined the kind of operational changes that your practice made. Have there been common concerns or questions that your patients have had about the new way of doing business at an ophthalmologist’s office?
DR. GAYATRI REILLY: I think there were two aspects of it. The first aspect of most of the questions was just in line with, “I don’t want to be waiting in a large waiting room,” and I certainly can understand that. And then the second aspect of questions was … in an ophthalmologist’s office, to get through a complete exam, there’s a good amount of equipment that is coming near a patient’s eye and coming in contact with a patient’s eye, or their face has to go into a certain machine, and so the second group of questions were really just in line toward, “Is it safe? Is there a risk for me as a patient to put my face into these machines or have these things come close to me?” Those are kind of the two main aspects of questions that I see the most common.
MICHAEL BUCKLEY: Very understandable. I’d like to spend a few minutes talking about telemedicine … telehealth. I think this has been a big change for a lot of us. How would you describe the last couple months of interacting with your patients that way?
DR. GAYATRI REILLY: It was actually great, and it was something that I was a little apprehensive about because I didn’t know what I could do as a retina specialist through a telehealth visit. You’re so used to being where I have to be able to see inside an eye to kind of talk to a patient, and this provided … we had telehealth visits scheduled all day, and we were really able to first just talk to patients, and it was just nice to see patients and see what they were dealing with and not have the same pressures and time constraints as you do in the office. But you sort of realize there’s a lot to medicine that is also … you can get from what the patient is experiencing, too. So, while I couldn’t do a complete retinal exam, I still had a pretty good sense of how a patient was doing; what could I safely and feel comfortably managing without them coming to the office; and what, unfortunately, did require an office visit to manage. So, it was a nice chance to touch base with patients and, just like I said, see how they were doing and provide reassurances that we are still here for them. And while we may just be postponing appointments at this time, this is based on how they’re doing. I think it’d be totally fine or, like I said, conversely based on what a patient might tell me. I might say, “This might not be ideal for you, but I do think we need to see you in the office,” and “This is what we’ve done in our office to make you feel comfortable.”
MICHAEL BUCKLEY: Great. I guess we all wonder when or if this pandemic will be over. When you think about the future of medicine, do you think that telemedicine is here to stay?
DR. GAYATRI REILLY: I do. I mean, I think that my colleagues and other specialties … I have patients who are general practitioners, and that’s one thing they have taken away from it all. While we all love seeing our patients in the offices, sometimes it really does make it much more of an efficient means for patients that they can get the answers that they need safely, still, but not necessarily have to take a full day out of their schedule to get the answers that they need. So, I think there’s definitely going to be a role for it. There’s going to be this hybrid type of situation where I think some things can be safely managed through telehealth, while there is still going to be a role for office visits. And from what I’m seeing from the insurance companies and Medicare, there was so much support given to back up telemedicine, which helped a lot, as well.
MICHAEL BUCKLEY: For folks that are still making those adjustments, any tips that you’d give patients and their families to make a telemedicine visit go as well as it can?
DR. GAYATRI REILLY: I think the biggest thing was just sort of the technical difficulties we can all understand. The first thing that was helpful for a lot of my patients, they had a family member just come in and check their microphone and check their speakers and just sort of make sure that they had the bare bones of what they would need for the visit. And then I found my patients … they made a list of questions that they had, and while nobody was in a rush, it just kind of kept them on track with what their concerns were, and it kept them nice and organized to make it a beneficial experience for both of us.
MICHAEL BUCKLEY: That’s interesting. I never thought about how the patients are in the comfort of their own home, so while they might … that telemedicine might be an unfamiliar means of communication, they’re at their dining room table. It’s interesting. Those are really great points that I think will help our audience a lot. Just one more question on how things have maybe returned to “normal.” Have eye surgeries resumed in America?
DR. GAYATRI REILLY: They did. So, the end of about … I think it was the third week of May when I restarted elective surgeries. From March through May, the only surgeries we were doing were emergencies—things like retinal detachments or things that were vision threatening, but then around the third week of May, they released the restrictions and allowed for elective surgeries. Now, each area has its own requirements as to what is necessary to undergo a surgical procedure, so I would certainly recommend touching base with your surgeon or surgical coordinator who’s helping you to just sort of see what’s necessary, because at least in my area, we do require COVID testing prior to surgery, and there are other things that need to be done before surgery that we didn’t require prior to all this.
MICHAEL BUCKLEY: That’s great advice to check how it applies for your particular practice. Dr. Reilly, we’re just going to walk through a handful of questions from folks that have come in already. One questioner from New York is wondering that she has heard that green vegetables help delay macular degeneration. I’m wondering, is that true, and what type of vegetables would be most helpful?
DR. GAYATRI REILLY: Absolutely. We categorize the green leafy vegetables—so the spinach and the arugula and the kale—the leafy greens as to having high levels of antioxidants, specifically lutein and zeaxanthin. Those are the two antioxidants that are very helpful to decrease the progression of macular degeneration, and they’re found in highest quantities in things like spinach and arugula. Your leafy greens are very helpful for patients who are at high risk or just concerned about their macular degeneration risks.
MICHAEL BUCKLEY: Earlier you mentioned the increase in screen time that I think all of us are having. We have a listener that’s wondering, “Are there devices that help somebody be better able to use a computer or a tablet of any kind?”
DR. GAYATRI REILLY: There are. And, you know, there are so many different programs that are out there for patients, specifically, who might not have good vision for computers, whether it’s from glaucoma or from macular degeneration. If they have trouble seeing the entire screen, there’s actually a system that’s basically like a talking computer, where there’s software that’s built into a system that can scan what’s on the screen and convert it into sound. So, you can listen to what’s on the screen. The best thing I always recommend—and there’s a lot of things like that you can do, even as simple as changing the glare and contrast on your monitor to help make your screen a little bit easier for you to see—but the best thing I always recommend, and we’ve spoken about this before, is that all patients—even if they have pretty good vision from macular degeneration—really should see a low vision specialist at some point. Low vision specialists do an amazing job of going through a day-to-day schedule with the patient and what their needs are and can kind of identify what devices or screens or things that might make their lives a little bit easier, which can go a long way.
MICHAEL BUCKLEY: Great advice. As you can imagine, we’re getting some questions about the injections that people receive. Question—I don’t think we’ve ever had this before in a Chat—somebody’s wondering, “If you get injections for a number of years, do they lose their effectiveness over time?”
DR. GAYATRI REILLY: That’s a great question. The short answer is, “no.” The more complicated answer is that it depends. So, just like we see, it is a little bit patient dependent when it comes to medications. I have had some patients that seem to get used to a medication, and they may not be getting worse, but they no longer see the same benefits as they used to, let’s say a couple years ago. Thankfully, now, though, we have three, four different medications that typically we can switch the medication and then they can expect to see a benefit for many, many years. I’d say that that’s less common though. A majority of patients do very, very well for long periods of time on the same medication.
MICHAEL BUCKLEY: We’ve got a few questions wondering, “Are there new treatments coming down the line over the next few years?”
DR. GAYATRI REILLY: The time right now is pretty exciting for both dry and wet macular degeneration. We spend a lot of time talking about wet macular degeneration because of the treatments that we have, but we’re finally seeing some progress in the research for dry macular degeneration, specifically in the advanced form of the disease with geographic atrophy, where we are progressing into Phase 3 trials, which is one of the last key steps before it can be FDA approved. So, there are definitely both medications for dry and wet macular degeneration that are doing very well in these Phase 3 clinical trials, and different modalities of treatment, as well, so, we are very familiar with injections in the eye, but there are other ways we can deliver medications, and they’ve also been explored. I think the landscape in the next 5, 10 years are going to be quite exciting and offer some much better therapies for patients.
MICHAEL BUCKLEY: Related to new research, we have a few questioners asking about both gene therapy and stem cell treatments. I think a lot of people … those names, those terms sound familiar, but I don’t think a lot of people know what they are and whether that has any hope for AMD.
DR. GAYATRI REILLY: There’s definitely hope, and there’s definitely a lot of research in the very beginning stages for each. Gene therapy we’re talking about in macular degeneration being complex, because there’s a lot of different genes that are implicated for macular degeneration. It’s much easier to do something when it comes to gene therapy when there’s one gene that you can identify for disease, and then you can try to modify that to not cause the disease. For macular degeneration, both dry and wet are associated with more than one gene and have additional factors that are implicated in its pathogenesis. So, it’s a little bit more tricky with gene therapy, but I would say that we’re definitely still in the early parts of exploration in terms of research there. Stem cell therapy is different. Stem cell therapy is the thought that you could regenerate cells using stem cells. So, in patients who have had cell loss due to macular degeneration—which is in the form of losing tissue in your central vision, which is a big reason why both dry and wet macular degeneration patients lose vision—the idea is that the stem cells could actually recreate the cells that have been lost in that area. And we have seen some limited success in conditions that are similar but a bit worse than macular degeneration, but these are still very, very early but promising trials at this point.
MICHAEL BUCKLEY: That’s good to know. I’m seeing a few more questions from our listeners. Someone is asking about retina replacement. We know these diseases impact the retina, and we hear about hip replacement and knee replacement and a lot of other modern medicine. Is there such a thing as retina replacement, or will there be down the road?
DR. GAYATRI REILLY: There’s not a thing such as a retinal transplant or retinal replacement. There are a lot of structures in the eye that you can transplant, and you can replace, but the retina to date, so far, has not successfully been transplanted. One thing we have seen some success with, though—and this question may or may not be alluding to that—is sort of bypassing the retina and trying to utilize other means of providing the brain with the same information without using the retina in between. That is something that, again, is fairly early on in the exploration phases, but that would be a bit more plausible than transplanting a retina.
MICHAEL BUCKLEY: A caller’s wondering about vitamins. Are there vitamins that they should be asking their doctor about and possibly taking for either wet or dry AMD?
DR. GAYATRI REILLY: The AREDS2 vitamins are vitamins that contain vitamins C, E, and those antioxidants I spoke about earlier—lutein and zeaxanthin, zinc, and copper. Now that’s … all of those vitamins are in a vitamin called the AREDS2 vitamins, and these are specific for patients who have dry macular degeneration in an intermediate level. So, I think, number one, it’s a great conversation. It’s a great question for your doctor, because every patient is different, and for a lot of patients, they will not see any benefit from taking these vitamins. There’s been no proven use of these vitamins prophylactically. They don’t prevent anything, but if you do have dry macular degeneration, they might be very helpful for you, so I think it’s a very good question, but it’s also a very good question for your doctor.
MICHAEL BUCKLEY: Where would somebody find the AREDS2 vitamin? Is that in stores, or is that prescription?
DR. GAYATRI REILLY: It’s not prescription, which is good. You can find it in your grocery store, your pharmacy. Different companies make it. The key is that you do want to make sure it has that formula on it. It gets very confusing, even for myself. If you go to the vitamin section, there are things that say, “Vitamins for your eye” and “Your eye health” and things like that, but they won’t say “AREDS2 formula” on it. And that is very specific for the medication you need for dry macular degeneration, but it is found in the grocery store. Pharmacists are also helpful to help find what you need, but you do not need a prescription for it.
MICHAEL BUCKLEY: That’s great advice. I appreciate that because I know that section of the store can get a little overwhelming. So, to our listeners, it’s A-R-E-D-S, and then the number 2, so AREDS2. A-R-E-D-S and the number 2. We’ve got a few questions about cataracts and AMD. Does one cause the other, and is there anything about cataract surgery that would either help or hurt someone’s AMD?
DR. GAYATRI REILLY: No, and that’s one thing that is a really good question, because for quite some time … and we still continue to sort of fight against this myth that doing cataract surgery will worsen macular degeneration, and there may have been a point in time years ago when that was true, but thankfully, with the improvements in cataract surgery, we don’t find that to be the case now. So, they are unrelated. They are both seen in elderly. As patients get older, we see both cataracts, which is the cloudiness of the lens, as well as macular degeneration. One does not cause the other. And cataracts, if you do choose to remove them with surgery, would not impact your macular degeneration.
MICHAEL BUCKLEY: A listener is wondering … they hear about laser surgery for visual acuity. Is there any laser surgery, maybe, down the road for AMD?
DR. GAYATRI REILLY: No. Actually, we started off our therapies with laser therapy, and the injections have replaced that. We started in the 1990s with a laser treatment for these areas for wet macular degeneration, but we found that while they did work, they also caused a lot of damage and a lot of scarring to the central vision, and the injections have now replaced that as a treatment. I don’t foresee any laser being superior to injections in the near future.
MICHAEL BUCKLEY: We have time for just a few more questions. As you know, a lot of families—as AMD is age-related—a lot of families may also have someone in the household who is impacted by dementia at various stages. I just want to … in your practice, how does it work best when there’s a patient that is at some stage of cognitive decline? Any advice you could give family members and caregivers for how to navigate an eye care appointment while there’s also some impact of dementia?
DR. GAYATRI REILLY: There’s always a period of time in a day that most patients with dementia tend to be at their best. I usually try to ask the family or the caregivers to make appointments around that time of the day because that definitely makes the experience a lot more fulfilling for the patient, as well as everybody who’s involved in the care. It may not be at 8 o’clock in the morning. While that may be more of a convenient time for the patient, it may not be the best time for the patient. I think family really helps. Whenever a patient is coming to an office that they’re not familiar with, there’s an anxiety that’s there if you’re completely … you’re having no cognitive difficulties, so, going to an unfamiliar place, but still having a familiar family member helps quite a bit.
MICHAEL BUCKLEY: Do you think there are things that the family member can do in advance to … whether it’s communicating with your practice or communicating with the patient that could help that appointment go as well as it can?
DR. GAYATRI REILLY: I think both. I’ve spent a lot of times speaking with family members before seeing a patient, and they can kind of give me an idea of what the needs are for the patient. Treatment is always going to be patient dependent, and the more information I have, the better I can make an appropriate treatment plan that would be in the patient’s best interests. So, I think definitely reaching out to the physician and talking over a few things is definitely helpful, whether it’s before or after a visit. And then, yeah, I mean, talking … again, when it comes from family, it’s received a lot better for patients, because they know who they’re talking to. If it it’s explained what’s happening, what’s going to happen, why we’re doing this, we want you to be able to watch television, or whatever explanation is necessary; it certainly is helpful.
MICHAEL BUCKLEY: Dr. Reilly, as we conclude, it’s been, I’m sure, a very tumultuous few months for you and your patients. Any kind of concluding observations or recommendations for whatever the future holds for the pandemic? How we can best navigate that, particularly our vision health?
DR. GAYATRI REILLY: I think the best thing is really being open with the communication. I had so many patients who were just genuinely afraid. And I know it’s a really honest statement, and it wasn’t something I was particularly surprised about, but they didn’t want to … they were avoiding what was happening with their vision because they didn’t know what the conditions would be here. I think just calling the office, asking the office manager or the physician, “What precautions are being taken?” what concerns that you might have, “Should I be bringing somebody?” or all these different questions you can have answered before you come in, so that if you are experiencing vision loss and you’re worried about your safety, hopefully you can feel reassured with the situation. I found that, like I said when I was using the telemedicine platform, that was a lot of my conversations were just sort of reassuring them that we’re not taking this lightly here. We really do worry about patients. We don’t want anybody losing vision because they are worried about their appointment.
MICHAEL BUCKLEY: That’s fantastic advice. I think it really is a microcosm of the entire pandemic experience to just have good communication and to recognize that we’re all in this together—the physicians and the staff and the patients. Where the future goes, I think, has a lot to do with how we work collectively in the face of these challenges. Well, Dr. Reilly, it was fantastic to have you back, and I think so much has changed since you’ve last been with us. We really appreciate the details you gave about how your practice is working in these new times and updates about new medicines coming down the road and vitamins and diets. On behalf of BrightFocus, I want to thank you for being so helpful to us today.
DR. GAYATRI REILLY: Thanks for having me again.
MICHAEL BUCKLEY: My pleasure. Dr. Reilly, on behalf of BrightFocus, thank you for being with us, and we will hope to have you again soon.
DR. GAYATRI REILLY: Thanks, everyone. Be safe.
MICHAEL BUCKLEY: Alright. Thanks. Bye-bye.
