This telephone discussion features Albert O. Edwards, MD, PhD, a board certified ophthalmologist specializing in diseases and surgery of the retina at Oregon Retina, LLP, who explores the topic of treatments for macular degeneration.
“Treatments for Macular Degeneration”
Transcript of Teleconference
April 30, 2014
GUY EAKIN: Good morning! Hello, everyone, and welcome to our monthly BrightFocus Chats presented by the BrightFocus Foundation. My name is Guy Eakin. I’m a Ph.D. in Biology and I’m also the Vice President of Scientific Affairs for BrightFocus.
“The major change in treatment has been just incredible. The drugs that we have now that we put inside the eye work so well that they are miracle drugs compared to what we had before 2005.”
Dr. Albert O. Edwards
Today we’re going to talk about “Treatments for Macular Degeneration” and if you’d like to submit a question at any time during today’s call please simply press *3 to submit your question to an operator. If for some reason you are disconnected from the call, there is a number that you will have to call to get back in. I am going to tell you that number right now: that’s 877-229-8493. You’ll then be asked to punch in an ID code, and that’s 112435. Again, that’s 877-229-8493 with an ID code of 112435.
So, our guest today is Dr. Albert O. Edwards from Portland, Oregon. He is an M.D., Ph.D. specializing in diseases of the retina. Dr. Albert has had a remarkable scientific career, having been a prolific author of more than 70 research papers in this disease, as well as some 200 presentations on the topic. In addition to those research honors, he’s been listed for many years as being among the best doctors in America and also in the Consumer Research Council’s Guide to America’s Top Ophthalmologists.
In recent years, he has turned his clinical focus to his patient population in Oregon, and he calls Oregon Retina his clinical home now. So, Dr. Edwards, thank you for joining us. I think I have these things right, but if you don’t mind, can you tell us a little bit about yourself and maybe a little bit about the patients you’re seeing?
DR. EDWARDS: Yes. Thank you, Guy, and thank you for the opportunity to participate in this chat. My practice is actually in Eugene, Oregon, which is two hours south of Portland, so we are in the Southern Willamette Valley. I am a retina and fovea specialist. I see patients with all manner of diseases that affect the back of the eye and that cause inflammation or uveitis in the eye, and that have ocular tumors—either benign or cancerous tumors. And, as macular degeneration is one of the most common age-related eye problems, and one of the most common eye-problems in general, I see patients all day long with macular degeneration in all of its many forms. So, I’ve spent a lot of time with this condition.
GUY EAKIN: So, I think many of our callers are new to the fields of optometry and ophthalmology, and they might have a question about what does it mean to be a retinal specialist? How do patients end up coming to you? Where have they been before they come to see a retinal specialist?
DR. EDWARDS: Most of our patients are referred by other eye doctors. Those eye doctors may have received training in optometry, in which case they will have an O.D. degree. Typically [their] door will say Dr. Jane Doe, for example.
We also have general eye doctors and subspecialist, eye doctors who are not retina specialists, who are trained through medicine. That would be either M.D. or D.O. degrees. Those doctors will typically be Jane Doe, M.D. or comma D.O. That’s how you can typically tell the difference. Both of the general eye doctors can provide excellent eye care.
Retina specialists are distinguished from other types of eye doctors by special training, typically at least a two-year fellowship or two years of additional training after completion of the general eye studies. And, perhaps even more important, is that in addition to that two years of training, we take care of only patients with retinal problems, such as macular degeneration.
On the one hand, many patients in the public like to complain about the fragmentation of medicine and how they can’t see one doctor anymore. The upside to that is that when you have a doctor such as myself that sees the same disease in all of its many forms and manifestations, and various presentations and complications, all the side effects of treatment, the problems that can happen with or without treatment—we have a very high level of understanding of how to apply all of these complicated concepts to specific, individual patients. Not just of the anatomy of the disease but also to the particular concerns or biases or problems that they’ve had in the past with various therapies and themselves or their family members and friends.
Retina specialists are very unique when it comes to managing eye problems—certain types of retinal eye problems, including macular degeneration.
GUY EAKIN: Well, you brought up the sector of treatments, and that is certainly the theme for today, of this monthly chat. We are going to try something different. If you’ve participated on the prior chats, we’ve had a more extended period of comment from the physician who has been involved but today we are going to move directly into the questions and answers because, really, we have just been flooded with so many questions that have come in about the subject of treatment.
So, I want to start with a question of our own. Dr. Edwards, could you kick us off with a question from me? Do you have any advice that serves as your gospel? That is to say, that regardless of the type of treatment, is there anything you find yourself telling every patient, every day, that is just good common sense about how to take care of your eyes and deal with macular degeneration?
DR. EDWARDS: Right. Well I would say it depends on the patient situation. If we have a patient, for example, that has just found out that they’ve developed wet macular degeneration, which is the growth of abnormal blood vessels under the retina that can cause sudden vision loss, and then they have particular concerns that need to be addressed. So we try to help them understand the value of treatment and in particular though, we try to have those types of patients begin to become aware of their visual function and their visual needs so that if they get this wet condition in the other eye they can pick it up earlier.
If we have patients who are just discovering that they have the diagnosis of age-related macular degeneration and that it is still in the earlier stages—for example just the buildup of deposits—we talk to those patients about what they can do to reduce vision loss and how they can also become aware of changes in their vision that might be an indicator of the need for urgent care.
Believe it or not, one of the biggest problems we have in preventing vision loss is getting patients to call us when they have a problem, because the vision loss doesn’t hurt, it’s frequently one eye, patients may not notice it. Or, even when they do notice it, they’ll say they are busy and they won’t bother to call for months, at which time there is often nothing we can do to help them.
Then we have patients who have family members or patients who are going through the terminal stages, the last stages of the disease where they have severe vision loss. Those patients have different concerns. It really depends on where patients are in the disease course.
GUY EAKIN: You’re bringing up the disease course. We, of course, hear macular degeneration divided into two general types of wet macular degeneration and dry. We have a number of questions that are coming in about both types of conditions. But let’s start with the wet and the more general conversation of what does it mean to have wet macular degeneration, and what are the most common treatments for wet macular degeneration?
DR. EDWARDS: Wet macular degeneration is a general term that we use for patients to explain their condition. It doesn’t actually specify underlying etiology, it doesn’t specify treatment, it specifies that there is a growth of abnormal blood vessels, either in or under the retina, which is neural tissue that collects light and sends it to the brain. Now, the most common cause of wet macular degeneration is abnormal blood vessel growth into the eye in patients who have age-related macular degeneration, but you can get wet macular degeneration from a number of diseases. For example, patients who are severely nearsighted, patients who have dilated blood vessel diseases, people who have many other conditions.
So fundamentally, anything that damages the layers in the back of the retina, that central part of our retina that is responsible for detailed vision that is called the “spot” or the “macula”—macula is just spot in Latin—anything that damages that tissue can be invaded by these abnormal blood vessels and a healing process that has gone awry. In that situation, treatment is very important to prevent vision loss.
The major change in treatment has been just incredible. The drugs that we have now that we put inside the eye work so well that they are miracle drugs compared to what we had before 2005. If you go back to 2005, less than a decade ago, most patients lost vision and today most patients will maintain vision. They may lose it over time from progression of the underlying disease of the dry macular degeneration but, in the short-term, the difference is dramatic. Great question, Guy.
GUY EAKIN: There is some follow-up to that. We talk about these drugs that you put into a person’s eye and for many people who are being treated they know that this is an injection into the eye. For people who may just be finding out about this disease, this may be something that is kind of scary. What would you tell a patient who has never had an eye injection? How does one prepare? Is there anything that they might find surprising about how that is actually administered?
DR. EDWARDS: The first thing is to understand the value of the therapy. So, not all therapies have the same efficacy, not all therapies have the same safety profile. I think the first thing when we approach a scary medical procedure is that we need to understand the value of it.
In the case of treating a patient with say, new onset wet macular degeneration with an injection of medication into the eye, the value is huge. It is the difference between stability and an average of one or two lines of improvement on the eye chart, in which the vision is tested, versus a very high risk, over 50 percent risk, of progressing to legal blindness in that eye over a period of several months to a year or two. I think, first, is the benefit of the treatment is very large. I think that is helpful to understand why one would want to have the procedure in the first place.
As far as the injection, it is a very scary thing. None of us particularly like the idea of having a needle put in our eye. This is even difficult for people in the medical profession. I’ve had student doctors, for example, pass out when I put needles or poked other holes in the eye when they were watching surgery. So it is a very visceral process for which many of us have a great deal of fear about; it’s inherent in just who we are as people.
I think that one thing, in addition to understanding the value of it, is to be aware of the steps of the procedure. The first thing is that the eye is numbed-up. There are different ways to provide anesthesia to the eye and that will differ somewhat by the doctor and also by the patient’s need.
We have patients who basically never feel the injection and we have other patients who say it is one of the worst things that has happened to them. In the first case we put a few numbing drops on the eye, and the patient is fine and happy. In the other patients we put a shot of medicine next to the eye to numb it up.
We even have some patients in whom we’ll prescribe a mild narcotic or anxiolytic prior to the procedure if they have particular concerns, although most of those patients stop needing those oral medications after a couple of injections when the fear factor goes down.
The reality is, though, the needle isn’t what bothers most patients after the first injection. Most patients will say to my staff, “Oh, the doctor was right, it wasn’t as bad as I thought it would be.”
What bothers most patients is the cleaning medicine that we put on the surface of the eye. So we use a brown medicine called betadine and that is very important to be placed on the eye in order to reduce the chance of infection. The main complication from poking a hole in the eye with a tiny little needle is a one-in-a-few-thousand chance of getting an eye infection, and that risk is much higher if we don’t sterilize the eye with a drop of betadine. Unfortunately, betadine burns: It is a very powerful sterilizing medication and the eye burns afterwards.
We have evolved a protocol over time in which we use a higher concentration of betadine in a very defined area of the eye. We also use a wire lid holder to hold the eyelids apart so that patients cannot blink and spread the betadine all over the surface of the eye. With this protocol we’ve been able to dramatically reduce the discomfort after the procedure. But, in spite of that, we still have patients that are very bothered by it and some who even have stopped having the treatments it bothers them so much.
GUY EAKIN: So there are a couple of things there.When you say “we,” I think you are talking about an entire field of retinal specialists and not simply your practice but...
DR. EDWARDS: Actually I was just talking about my office. I was talking about myself and my staff. We have a protocol, a coordinated set of guidelines and adjustments that we follow from the first injection, to the second, to the third to try and tailor it to each individual patient depending on what their particular negative experiences are. Those may be from the needle, they may be from the burning, they may be just from the wire lid holder.
GUY EAKIN: You described a process that you described, first of all, as the first injection. How long do these injections go on? How frequent are they? The next question I think is going to be, how careful do we need to be about making sure that if there is a certain frequency that you’re prescribing, that we stick to that frequency?
DR. EDWARDS: Well I think the injections can go on until they are not needed. There is no limit to the number of injections that can be given in the eye. We use a very, very small needle. It’s so small that it mostly separates the tissue, rather than damaging it. Now as far as…I’m sorry, what was the second part of your question?
GUY EAKIN: My question was…so the first question you just answered which was, how long do the injections go on? And that’s until they are not needed. The second question is how frequently do you administer these? So, you are talking about a procedure that somebody needs to come in and maybe get somebody to drive them into the office. What should be a patient’s expectation about how frequently they might be receiving these medications?
DR. EDWARDS: Well the frequency of injections typically starts out at a monthly interval. There are few places in the world where at least three injections in a monthly interval are not given. I think not doing that is a little dangerous in the typical patient with age-related macular degeneration because of the risk of bleeding from persistent growth of these blood vessels.
I should just say a disclaimer. There are many, many variations as to how we approach disease in particular patients. If your doctor recommends a different interval you can just ask why not monthly. It doesn’t mean it is wrong. It may mean that there is a specific circumstance.
I think that as far as the schedule, the schedule can be very important for some patients. We have patients who get ill, go in the hospital, and are two weeks lake, and have a hemorrhage and permanently lose some vision. We have other patients, who will come in just sort of whenever they can remember, and they do fine. But I would say in general that, if it was my eye, I would stick to a set schedule and I would be very, very careful not go beyond it without an evaluation to make sure that there’s not a recurrence. That’s when patients lose vision is when they have recurrences and they bleed.
GUY EAKIN: We have a question that builds on that, that comes from Judith in Ohio. She’s asking the question, “How long before eye drops for wet macular degeneration will be available?”What do we know about those? Those are down the line, but do you have any opinion about that question?
DR. EDWARDS: Well, I think it’s very exciting. First, it would be nice for patients to not have to get an injection into their eye. I don’t have a crystal ball to look in, to say how eye drops would be implemented. But, if I were to look into my crystal ball and guess, I would say that they will probably end up being an adjunctive therapy to be used in addition to the injection—perhaps to extend the interval or perhaps to allow patients to get off of it.
The reason for that is that the back of the eye is compartmentally very far away from the surface of the eye. You wouldn’t put shampoo on your head to treat your brain, right? That’s basically what we’re talking about putting a drop on the eye. I mean, it’s a little different but these drugs have to be specially formulated so when they hit the eye surface, which is designed to keep things out of the eye that touch the eye surface, they have to be formulated so that they can penetrate. First they have to get past the tear film, and not washed down the nose, and then they have to penetrate through the surface barriers and get into the front of the eye, and then they have to diffuse into the back of the eye in spite of a gradient in which fluid produced in the back of the eye circulates through to the front of the eye and drains out through the edge of the front of the eye.
There are a lot of barriers to getting drugs from the front to the back, but we know that it happens. The question is whether you can get the dose high enough or not.
GUY EAKIN: That’s really interesting. So you described all of thesewonderful things that our eye does for us,that its structure does, preventing things from getting into the eye and as well as the own structure of the eye actually are at odds with the type of engineering that we are trying to pursue to make drugs easier to deliver.
DR. EDWARDS: And there are a lot of alternative ways to get things from the surface. You can electrically movesubstances into the eye. You could inject it under the skin on the surface of the eyeprovided the safety toxicity. You had another question about, from Judith’s question, about when eye drops would be available. We don’t know, but the drug that is closest to going into the last stage of clinical trials prior to approval by regulatory agencies such as the FDA is Squalamine. I think that it’s phase II data, meaning it is sort of introductory, safety, possible some information about whether it works or not, is supposed to be released in July of this year. I think that’s the drug that is topical drops that’s closest. So we are still talking years, to the best of my knowledge.
GUY EAKIN: We used some kind of complicated language there when we use words like Squalamine. I want to remind our callers that if you call into our organization we can send you a transcript of this call and any others. They are also available on our website and I want to make the reminder that if you have a question that you would like to submit to us you can just dial *3 at any timeand that will take you out of the call, take you to one of our operators where you can ask the question, and then they willreturn you back into the call.
So, we have had a number of questions coming in about, “What happens when injections aren’t working?” So, Geraldine of Pennsylvania and Trula from Idaho have asked questions about what does the future look like and so…..
CONNECTION LOST [Editor’s Note: At this point in the Chat, BrightFocus experienced phone connection problems during severe thunderstorms near our Clarksburg, Maryland office.]
DR. EDWARDS: Hello Guy? Hello? [Hang up]
GUY EAKIN: So, we are all having to dial back in right now. We are experiencing a lot of major thunderstorms around here and wonder if one of the lightning strikes in the area might have disrupted our call today. If that is the case, we apologize. Unfortunately, the thing that we have the most control over right now might actually be macular degeneration and not the weather. We are working towards getting our guest, Dr. Albert Edwards, back on the call today.
We do have maybe some other questions that we could begin addressing. One is Carl from New Jersey asked about the differences between wet and dry macular degeneration. I’m not a doctor, but we at BrightFocus have a lot of experience with this question. What might be referred to as the dry macular degeneration is typically a condition that occurs in a person beginning in age 55 and above, where you might begin to see some wavy lines or some problems with your vision, like shifting of regular patterns. If you looked at a brick wall or the tile pattern in your bathroom, they might appear a little wavy. What’s going on there is that the eye is responding to an accumulation of problems over the course of a lifetime.
This is something that, in some cases, may advance to a more advanced form of the disease which we would describe as wet macular degeneration. Dr. Albert described that earlier on as being the type of macular degeneration in which there is the growth of new blood vessels in the back of the eye underneath the retina. These blood vessels, as they break or hemorrhage, tend to leak blood into the eye and that gives it its name, wet macular degeneration.
We are going to take a quick break here to see if we already have the callers back on. What we can do in the meantime is say that our website, if you are someone who uses a computer, has the top questions you can ask your doctor resource. We have a written version; we have an audio version; we even have video versions of this. Many of the people who call into our organization find this helpful.
If you don’t use the internet, then there are other ways that you can get to us. You are welcome to call at 1-800-437-2423. Again that’s 1-800-437-2423. Or visit our website at BrightFocus.org. That’s B-R-I-G-H-T-F-O-C-U-S dot O-R-G. I think we are still having some problems getting our doctor back on the line today and I do apologize. We will try again for another couple minutes here to get him back on the line. We are based in D.C., he is in Oregon, there is a lot of space in-between us, and like I said, the weather isn’t really cooperating with us today. So, I worry that we might have had something happen that’s just going to keep us from getting him back on the line.
Let me look down the list at some of the other questions that we have. There are a lot of questions out there about dry macular degeneration. I think what we’re going to do is, one of the main things that is available for dry macular degeneration right now are the AREDS vitamin supplements and that’s A-R-E-D-S. That’s a formulation of vitamins that are often prescribed for people with the dry form of the disease.
It doesn’t treat the dry form of the disease but what it does do is lower the chances that the disease is going to progress into the wet form of the disease. What you’d be looking for, these can be found in most pharmacies. You would be looking for vitamin supplements that have A-R-E-D-S on them. And we’ve had some questions about the different formulations, but the main thing to look for is the one that has the most research around it, which is that AREDS formulation.
We’ve had a lot of other conversations that we’re going to have to work into another BrightFocus Chat series. It sounds like today we’re not going to have success getting Dr. Edwards back on the call, unfortunately; but I do want to thank him so much for taking the time to speak with us today, and thank you to everyone who joined the call and asked us questions.
We will be posting a recording and a large-font transcript of our call on our website. That website again is BrightFocus.org and remember, that is a dot org, not a dot com. You can listen or download our past chats off of iTunes; there is another service called SoundCloud, and as I said, you can find them on our website as well.
Our next chat will be “How To Remain Independent Despite Low Vision,” and that will be held on Wednesday, May 28th at 1:00 p.m. EDT, 10:00 a.m. PDT. We would encourage you to register and submit questions in advance and we will be sending you a reminder email for anyone who registered on today’s call. We will send that email out here in the next couple weeks.
In fact, you can actually register for that May chat right now and also request free resources on macular degeneration, like our Essential Facts brochure, by calling BrightFocus at 1–800–437–2423 or by visiting our website at BrightFocus.org. Again, that’s 1–800–437–2423 or BrightFocus.org. The BrightFocus Chats are held on a monthly basis.
To find out more about our upcoming chats just give us a call or check our website for updates. Thank you everyone for your time and for the questions you have submitted. We will do our best to get those addressed in the next call. If you’d like to leave us a comment after the call, just stay on the line, and thank you from all of us at BrightFocus Foundation.