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"What is on the Horizon for
Macular Degeneration?"

This telephone discussion features Milam A. Brantley, Jr., M.D., Ph.D., of the Vanderbilt Eye Institute, on the latest research findings and their implications for treatment; and a patient advocate, on living with macular degeneration.

 

 

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Date: March 26, 2014

Duration: 45:41

Speakers:

Milam A. Brantley, MD, PhD Deanna from Florida, a Patient Advocate

 BrightFocus Foundation
“What is on the Horizon for Macular Degeneration?”
Transcript of Teleconference
March 26, 2014
1:00–1:45 p.m.

 

GUY EAKIN: Hello, everyone, and welcome to our monthly BrightFocus chat 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 at BrightFocus. Today’s discussion addresses the question “What is on the Horizon for Macular Degeneration Research?” On our call last month we asked people what topics they were most interested in learning more about, and research was at the top of many people’s lists.

In this chat, we are going to look at research discoveries that could impact prevention and treatments. We’re going to cover therapies that are currently available, what therapies might be outdated, and maybe some promising technologies that are on the horizon.

We’re going to have the chance to hear from a clinician, Dr. Brantley from Vanderbilt University, and also from a patient advocate, Ms. Deanna from Florida, who are both going to join me on the call. And then after that, we are planning on a question-and-answer session on topics related to this chat.

So if you have a question for the panelists, I want you to press *3 at any time during the call to submit it to an operator. What’s going to happen is that will take you out of the call, you’ll be put into a conversation with one of our operators who will take down your question, and then you’ll be returned to the call.

For those who are following us online, you can follow the conversation and pose questions on Twitter using the hashtag #BrightChats, and this is important—if for some reason you are disconnected from the call, here is the number that you can use to call back in. You can dial 877–229–8493 and then there will be a prompt for an ID code, and that ID code is 112435. So again, that’s 877–229–8493, followed by an ID code of 112435.

I’d like to kick things off by introducing Dr. Milam Brantley, who’s an Associate Professor of Ophthalmology and Visual Sciences at Vanderbilt University. He’s both a researcher and a clinician who treats macular degeneration, and his research involves pharmacogenomics. This is a cutting-edge area of personalized medicine that’s being applied to eye diseases and vision loss. Here at BrightFocus we fund leading research in vision diseases and we’re proud to say he is one of our current grant recipients. Thank you, Dr. Brantley, for joining us.

MILAM BRANTLEY: My pleasure, Guy. I first want to thank Guy and BrightFocus for giving me the opportunity to talk to some folks who may have Macular Degeneration and certainly have some questions about it. In a way I feel like I am talking to one of my patients in the office. Maybe we’ve just had the diagnosis, or maybe it’s something that has been going on for a long time, but this time I get the opportunity to talk to dozens of people at once, and so I really appreciate that.

When I talk to patients about age-related macular degeneration, which I usually call AMD, I stress the age-related part. I would rarely diagnose AMD in someone under the age of 55 and usually more likely 60. If someone is being told that they have AMD in their 30s, it might be worth looking into the fact that it could be something else—something that looks a lot like it and is closely related, but may be an inherited condition.

AMD itself is the leading cause of irreversible vision loss in older folks in the United States and as we know, it affects the central vision. That’s an issue because it can affect driving, and watching TV, and reading, and recognizing faces—these are the things that my patients tell me most about.

I will often try to let a family member understand that by having them put their fists, right in front of their eyes, and say, “You know in general you can see things around. You can recognize that there is a person standing there and maybe in a white coat, and you might be able to tell if it’s a man or a woman, but you can’t make out the fine details, in general, this is what AMD is about.”

Now, we’ve all heard the terms “dry” and “wet” and that sounds very simple, but it’s a little bit more complicated than that. Of course, “dry” and “wet” don’t really have anything to do with the way the eye feels; it has to do with whether or not there is leakage of fluid in the back of the eye. We all kind of know what “wet” means, but dry can actually mean a lot of things. When I talk to patients I talk about AMD as being early or advanced, and the first signs of AMD—the early signs—are typically little yellow spots on the retina called drusen; these are waste deposits. We can see those when we look at the back of the eye, and we can see them in pictures; maybe you’ve had doctors show those to you. Typically, vision is not affected. Well, this is dry AMD: there is no leakage of fluid at this point. This can progress to one of a couple of different forms of advanced AMD.

First of all, cells can simply just die; they quit functioning and they eventually go away—this is called atrophy. Atrophy just means “without form,” the cells aren’t there anymore. And, because sometimes the area of atrophy looks sort of like a map, we call it “geographic atrophy” and this has been abbreviated to GA. GA is also dry AMD, but it is advanced dry. So when you say “I’ve got dry AMD,” you might mean “I’ve got early AMD with just the drusen” or you might mean “I’ve got the advanced geographic atrophy dry form.”

The other advanced form is Neovascular or Exudative or, most commonly “wet.” That’s when new blood vessels grow under the retina and leak either blood or fluid. That can lead to sudden visual changes. One day you’re seeing just fine, and then the next day you’re either not seeing well at all, or things just seem a little bit fuzzy—and that’s the wet. So we know what someone means when they say they’ve got wet AMD, but the dry either could be very mild or it could be significant.

Now, there was one study done, and a follow-up study, that you may be familiar with, called the Age-Related Eye Disease Study, or AREDS. The first version was done back in the 1990s, and the second was done starting in 2006. AREDS, the original, looked at a series of vitamins to see whether that could help prevent people from advancing from that early stage. It’s more appropriately called “intermediate AMD”—where you’ve got some significant drusen—and [AREDS] looked at if that could help prevent an advanced stage, particularly the wet stage. This tested a group of things including beta-carotene, vitamins C and E, zinc and copper. It found that patients using these supplements, compared to patients who were given a placebo, had about a 25-percent less chance of advancing to the wet form of AMD. This was kind of the best thing that we had for folks for a while.

Then with AREDS-2, they studied some other molecules. Many of you have heard of lutein and zeaxanthin—pigments that are typically found in the retina; and these were studied, as well as fish-oil type molecules. The bottom line was that the AREDS-2 formula, the one that came out of AREDS-2, recommends lutein and zeaxanthin instead of beta-carotene, vitamins C and E, and the zinc and copper. This is evidence-based medicine, which we like to follow, [and is] the best thing that we have to tell people who have those drusen and have a likelihood of progressing to advanced AMD.

Now treatments for wet AMD, many of you know, currently include injections into the eye. We call them intravitreal injections, and there are three main drugs that we use: Lucentis, Avastin and Eylea.

There is a long story about those, and we can talk about those at some point if you have a question about them, but these are all molecules that work against a specific molecule that is in the eye (and throughout the body) called Vascular Endothelial Growth Factor. Of course that’s a little too long, so we call it VEGF. These are all anti-VEGF molecules. Most of the new treatments that people are looking at for wet AMD are actually things that are intended to be used in addition to these anti-VEGF injections, or to try to figure out if we can treat people with fewer injections and get the same results.

For the other form of advanced AMD, the geographic atrophy, there’s not really a good treatment at this time. So that’s where some people are looking now: Drug companies are looking for ways to maybe slow down the progression of the geographic atrophy.

The last thing I wanted to mention is the relationship between genetics and AMD.

I have patients coming in all of the time and their sons and daughters are saying, “Well, mom is 85; she’s got macular degeneration. I’m 60; am I going to get it?” There is definitely a relationship to genetics, but it is not a simple inherited condition. For instance, eye conditions such as Retinitis Pigmentosa or Stargardt Macular Dystrophy, are inherited retinal disease, diseases where a mutation in a particular gene causes the disease. If you’ve got the mutation, you pretty much have the disease. Depending on how it runs in your family, we can give you a pretty good idea of your likelihood of getting it. It may be 50 percent or 25 percent, something like that. But for AMD, although it has a genetic association, it is an association only and it’s not that clear-cut.

Whereas in those other conditions there are mutations, AMD has been associated with genetic variation. And that just means that maybe 60 or 70 percent of the population has a certain letter of the genetic code at a certain place, and the other 30 or 40 percent has a different letter. So there is variation at that spot.

What was found out about nine years ago is that certain genetic variation in certain genes related to the “complement cascade” that is involved in immunity, our innate immunity. This was a new thing. Some of that variation has a relationship to your risk of getting AMD. If you have the variant it doesn’t mean you’re going to get AMD, but it makes it more likely. Because other things are involved, and we might call them environmental things or nongenetic things. Actually, our laboratory with our BrightFocus funding is looking into some of these nongenetic, or environmental, or other things and how they relate to the genetics. So those are the things that I just wanted to mention at the beginning to set the stage for questions that we have coming up later.

GUY EAKIN: Thank you so much, Dr. Brantley. I know for many people Dr. Brantley did a wonderful job of describing, at a very approachable level, the biology of this disease. There were some big, big words involved. Now, I want to tell people that we’re going to create a transcript of all of this, so don’t worry about writing things down. There will be opportunities for you to either hear this broadcast later through a recording or get a copy of the transcript. I’ll tell you more about that later.

I’m sure people have questions, so if you’d like to submit a question for the Q&A portion of the call, please press *3 at any time during the call. No matter what’s going on, if you press that *3 you’ll be transferred to an operator who will take your question.

I’d like to turn the conversation over to Deanna from Florida. Ms. Deanna was diagnosed with age-related macular degeneration, or AMD, about 16 years ago in 1998, and she’s joining us today to share her story about how she approached the disease and how she continues to live with the disease. So, Deanna, welcome.

DEANNA: Why, thank you. Hi, everyone. I’d really like to thank BrightFocus for allowing me this opportunity as well to share part of my story with all of you. As Guy mentioned, in 1998 I was diagnosed with wet, age-related macular degeneration. I had no idea what this was. I had never heard of it. It was terrifying. And at that time, there wasn’t much help or support available to me. I had to learn about this disease on my own and decided to become my own advocate. I went on the internet and read as much as I could about the disease. I know that knowledge is power. I knew I had to find a way to cope with this.

I joined the macular degeneration support group at my local Association for the Blind and found comfort and loads of information on all of the available visual aids that I could use to enhance my vision. To list just a few, there is high-intensity lighting available, there are video eye cameras that enlarge print and allow you to write checks, read your mail, even read a magazine. There are lighted high-powered magnifiers, which I use all the time. There are computer programs that enlarge print and even speak to you. I myself have an iPad with enhancements for the visually impaired; I don’t know what I would do without it. I have many marking pens that do not saturate paper but allow me to see clearly what I have written. There are adhesive dots, little orange or red dots that you can put on your appliances to mark your hot and cold switches or your on and off switches.

I have stayed informed and used every available source of support that I can find. For example, the Library of Congress offers free books and magazines on tape and they will even read the newspaper to you. My local and state Department for the Blind sent someone to my house to evaluate my vision loss and actually recommended all sorts of assistance for me. I have even taken a six-week course in living with low vision and no vision given at my local eye association. I’ve learned cooking skills, gardening skills, computer skills, and many other lessons they had to offer.

My advice to anyone who notices a change in your vision—bending straight lines, spots on white walls, blurred vision—[is to] see your eye doctor immediately. If it is macular degeneration, the quicker you get there, the better. They have the latest treatments and the newest approved drugs, as well as information on continuing research that is being done today. You are not alone. For one, the website for this program called BrightFocus.org is so informative that most of your fears will be eliminated and you can move forward to live a very happy and productive life. My motto is: Learn to concentrate on what you still can see and not on what you cannot see.

With all age-related macular degeneration, you do lose portions or all of your central vision, but not your peripheral vision. You do not completely go blind and you learn to cope and compensate with practice. I have been blessed. I still do almost everything I did before. Macular degeneration cannot stop me. Maybe I’m a little slower, maybe I do some things a little differently and certainly a little more cautiously, but I do it with the same gusto that I have always had. I refuse to let macular degeneration win. Thank you.

GUY EAKIN: Well; thank you so much Deanna. Deanna mentioned that you are not alone, and you certainly are not alone. She mentioned as well the low-vision support groups that are available. We actually have a fact sheet with many of these low-vision support groups. Come to our website or call in, and we will send you a copy. That number is 800–437–2423. We’ll mention that number again later in the program.

I want to take the time now to thank both of our speakers for sharing their perspectives and in particularly in the case of Deanna, how she’s looked to her own horizons and plotted her own course for living with AMD. But we’re going to move on to the question-and-answer portion of the call now. If you haven’t submitted a question yet and if you’d like to, just dial that *3 on your phone and talk to the operator, and we’ll get your question into the queue.

While we’re waiting for questions to come in, we did have a number of questions that were submitted in advance by folks who were pre-registered, and our goal is to answer as many questions as we can that are representative of the callers’ interests on our topic. Then, after the chat, people can call BrightFocus at 800–437–2423 or visit our website and have their questions on macular degeneration answered by our own health educators. You can also call in to request a free copy of our brochure Macular Degeneration: The Essential Facts, which answers many frequently asked questions.

But starting things off, I think we’ve had so many questions that are coming in about stem-cell therapies, and Carol from Colorado asked, “I have early-stage macular degeneration. Would it be a good idea to be in a trial looking at stem-cell therapy to prevent its progression?” I think I’ll direct that one to Dr. Brantley. Tell us about stem-cell therapies. How far along is that? Is that a future treatment? Is that a present treatment? Where are we?

MILAM BRANTLEY: Sure, that’s a great question and I get questions about stem-cells all the time. I do want to talk about that. Before I do, I just want to thank Deanna for a wonderful few minutes of telling us about her experience. She packed so much valuable information into just a few short minutes. I wish every one of my patients could hear what she just said.

About stem cells: I do get the question a lot because it gets a lot of press and because it’s pretty exciting. We have to think first about what the objective of stem-cell therapies are. When we look at what potential treatments get the most airplay right now, those are gene therapy and stem cells for retinal diseases.

Gene therapy has been effective in a couple of cases of a very specific inherited disease where the gene was missing. The cells were still there and you could inject the gene. You could inject a virus containing the gene underneath the retina and that allowed that gene to go into those cells and make the protein product that was missing. So that’s replacement therapy. Stem cells are very different. Stem cells are really designed to approach a problem where you are missing the cells now. The cells aren’t quite there anymore, or certainly they are not functioning well at all. Stem-cell therapy has the advantage of approaching different problems with the same sort of solution, regardless of what gene. If it’s that macular degeneration has caused the cells to be lost, stem-cell therapy has the potential at least to put some cells back into the retina and have them form into the appropriate cells that are no longer there. So I think of stem-cell therapy as when cells are missing.

Well, as I talked about earlier, the case where that really comes through is in geographic atrophy or advanced dry AMD.  As I look at a list of clinical trials out there, and I’ll tell you a little bit about that too in a minute, almost all (all but one) of any stem-cell therapies are for advanced dry AMD or geographic atrophy.

A stem cell is simply a cell that has not differentiated into the kind of cell it’s going to be when it’s all grown up. There are a bunch of different kinds of cells in the retina maybe eight or nine, and there are support cells for the retina, but the idea of a stem cell is that you put an early cell in and you give it some chemicals that help it differentiate, or even some genes that help it differentiate, into the right kind of cell you want to replace.

There are different ways to do this. You can take embryonic stem cells—and you hear a lot about that because some states think that’s a good idea, some states don’t think that’s a good idea, and it all goes along with using embryos for research. There is another kind of stem cells called induced pluripotent stem cells, and that’s a mouthful. That’s IPSCs and these are cells that some researchers can take, basically from skin, and they give them genes that help them become early cells again—progenitor cells—where they can then differentiate into the kind of cell that you need, like a retinal pigment epithelial cell.

There are also some neurologic stem cells that have been used and people are also using bone marrow–derived cells, because the bone marrow has cells that differentiate into all of the different type blood cells, and so this is another way to try to take an early cell and make it become the sort of cell that is missing.

At the current time, there are no stem-cell trials that are in the final phase. Clinical trials (we should talk about that) basically come in three phases: Phase I, Phase II and Phase III. Phase I trials are very small and they are completely safety studies. You want to know if this drug or intervention is going to hurt anybody, and you do that in a small number of people—maybe 10 or 12, 20 maybe. Phase II is where a lot of the stem-cell trials are, and for those you crank up the numbers a little bit—give [the drug intervention] to a larger number of people. You are mostly concerned about safety, but you are also going to monitor whether or not there is any effect of your treatment, and that is where a lot of these trials are. There are several different companies and groups working on them, and there are a few Phase II trials out there, working primarily on geographic atrophy.

Now, your questioner said, “I’ve got early AMD; should I try to get stem cells to keep it from getting worse?” No, because again, what stem-cells are trying to do is replace what’s missing, and those things aren’t missing yet. So that would be very premature. What you recommend for somebody who has early AMD and doesn’t want it to be advanced is the AREDS-2 therapy and a few other things that I would typically tell patients.

GUY EAKIN: Thank you. You brought up the subject of clinical trials and the number that are going on. We have questions here about how to find out about trials that may be in our area of the country. There is a wonderful website called clinicaltrials.gov—and that’s all one word “clinical trials” followed by a dot and a G-O-V. If you are interested in clinical trials going on in your area, you can go to that website or have someone help you and plug in information about where you’re located and what conditions you’re interested in, and it will tell you what’s in your neighborhood.

There are other questions, about what’s involved in researching or looking at clinical trials and even in participating in a clinical trial. Deanna, I know you haven’t participated in a clinical trial, but you did a lot of research as a patient on what you might do to actually ask those questions and how you’d identify those clinical trials. Do you mind sharing your experiences on that subject?

DEANNA: Not at all. When I first was doing my reading and learned that there were such clinical trials going on I approached my retinal specialist. My retinal specialist evaluated my situation at the time and realized that although there were trials going on, in which his offices were participating as well, I was not a qualified person to join the trials. Of course I was quite disappointed but was thrilled to know that this was going on.

So, as you suggested, if someone goes to that website and is interested in the clinical trials, they might find one that suits them in conjunction with what their retinal specialist advises. So that was the way I approached it. As I said, I was disappointed I could not join in, but at the same time was very pleased to know that there were ongoing trials.

GUY EAKIN: Well, thank you. Let’s move on to the next question so we make sure that we’re getting as many people as possible in here. Joyce from Wisconsin is asking about her own personal horizon. She is saying “I was diagnosed 7 years ago with early-stage AMD. Is it possible that my AMD will never progress?” So, Dr. Brantley, what do we know about the early dry form of AMD? How many people are going to progress? How many people are just going to stay about the same?

MILAM BRANTLEY: That’s a great question, and it’s actually a hard one to answer because (as I mentioned earlier) dry early AMD can mean a couple of drusen that the doctor notices or it can mean you’ve got quite a few. That difference increases your likelihood of progressing. It also depends a lot on your age. If these drusen are seen in a 56-year-old and life expectancy is 85 to 90, you’ve got a lot of years that you want to keep things going very well. If it is noticed for the first time in an 85-year-old, you have a great chance of never having it progress to where it’s going to cause trouble.

In general, I would say about 25-percent of people who have kind of the intermediate form of AMD progress to the advanced form, and that happens in 5 to 10 years or so. Again that is very, very age dependent. I always tell my patients that the number-one risk factor for age-related macular degeneration is age. That has a lot to do with it, and time. As time goes on, if you look at the number of people who have AMD in their 60s, it’s pretty small. In their 80s it becomes more significant.

The most important thing is—I’ll echo what Deanna said is—keep in touch with your retinal specialist and get as much of an individualized view of what your retina looks like. That will help you figure out the risk of progressing to the advanced form.   

GUY EAKIN: We do have some more questions about the idea of progression and what’s in my future. Ms. G from North Dakota asks, “When I was first diagnosed and treated over a decade ago, my central vision was totally gone and I was told that that would never change. But it seems that over time the black hole has shifted to the right and I can see more from the left side of my eye. Can you address that?” So do things change? Does how the macular degeneration appears change over time?

MILAM BRANTLEY: It can. There are a couple of different ways it can. First of all, on a shorter- term basis someone might be diagnosed with wet AMD, and they are treated, and their vision gets a little bit better but it’s not what it used to be. And the doctor says, “I’ll tell you what, we’ve done these injections as much as I think we should. We’ve made all of the fluid go away. There’s no blood in the eye. You don’t need injections right now, we will keep an eye on you, but you don’t [need more] right now. And we will see what happens with the scar that’s formed in the back of your eye.”

Sometimes that scar still has some life to it—not in a bad way, but it tightens up over time. Just like a scar you might have on your arm that looks pretty gruesome at the beginning and it heals up pretty nicely. Sometimes scars can change and people will report that, “you know it seems a little bit better to me.” And maybe I’m looking at the back of the eye and I don’t notice a difference when I look, but they say “my vision has gotten better.”

Part of that, too, is your brain working to use the rest of your retina. That may be what’s happened in this caller’s case where over time her brain has figured out how to use the adjacent part of the retina to see just a little bit better. It’s not going to be perfect like it was before, but that black spot may decrease and change over time as you begin to use, at least a little bit, the adjacent parts of the retina.

GUY EAKIN: We have a number of questions here that are kind of the “dos and don’ts” of living with macular degeneration and there are questions about supplements that someone might take, there are questions about behaviors, like exercise. What do we know about vitamins or about other supplements? Specifically, people are asking about vitamin K and vitamin B and there’s mention of exercise. What supplements are the most useful? Is there anything we should avoid?       

MILAM BRANTLEY: Good questions. Right now, for my patients who have intermediate AMD in both eyes or advanced AMD in one eye and intermediate AMD in the other eye—and that means they’ve got some drusen and I think they’re at risk for progressing—I will recommend the AREDS-2 formula. I do that because doctors, myself included, like to practice evidence-based medicine, and these results were based on two large clinical trials of about 5,000 people that said this combination—and they looked at several—is the best we can find to help prevent the advancement of AMD.

And it’s been shown to be safe. In the original AREDS there was an association of the beta-carotene with lung cancer in people who smoked, and that was taken out of AREDS-2, so that doesn’t even factor in anymore. That’s typically what I’ll recommend. You mentioned vitamin K and vitamin D. I’ll be honest, I haven’t heard any rationale for using either one of those in AMD prevention. And you always have to be careful—I tell all of my patients—people are concerned about these are large doses of vitamins. AREDS-2 have proven to be safe, but I’ll always tell my patients, “I want you to tell your primary care provider about this.” And if I’m sending a letter back to their primary doctor, I’ll say, “We talked about the AREDS-2 formula, and as long as you think that’s okay we will have the patient start taking that.”

In addition to that, a multivitamin—even on-top of AREDS-2, is absolutely fine. Most of the people in the AREDS studies were actually taking a multivitamin as well, because the AREDS-2 doesn’t cover all of your needs. The other thing that I tell people—I mean the number-one really is, “Don’t smoke.” People will want the pill or the cure, but if they are a smoker the number-one thing I can tell them to do is stop smoking, because we know that smoking affects just about any macular condition.

I think exercise and eating healthy are just good things. It’s anything that a cardiologist would tell you. Try to decrease your body mass index; make sure the weight is under control; make sure your blood pressure is under control; make sure your cholesterol is under control—because there has been some association, not huge, but some association of these cardiovascular-type risk factors with macular degeneration. So if you are looking to do all you can, those are some things.

GUY EAKIN: Great. Thank you. So, Deanna, I have a couple questions that are coming in for you. One person is asking a very, very personal question about “What can I do to prepare myself for my eventual blindness?” And I think that’s a hard topic, this idea of blindness. She says—and this is Sue from Michigan—she says, “I don’t know how to be blind.” Do you have anything you could tell Sue about that?

DEANNA: Yes. If she has been diagnosed with age-related macular degeneration, one of the fears, of course, is that you’re going to go, as I call it, completely blind or black-blind. I think that was my biggest fear, that I wouldn’t see the faces of my children or I wouldn’t be able to drive or many other things that were so frightening. In my progression of my own diseases, I had to give up driving but I have compensated by using my peripheral vision and learning how to practice and use the vision that may not be as finely detailed as it is with central vision, but definitely [use it].

I don’t even know anymore what I don’t see. I know that what I see I love, and I’m so grateful for seeing it. It is frightening to think that you’re going to be blind. I didn’t know how I was going to live as a blind person either, but I don’t consider myself blind. I consider myself [a person] with low vision. I consider myself to have the ability to learn what I can.

Contact your local resources. They come to you. They are so extremely helpful. They have some of the answers that you think aren’t there. They will help to share information on how you can learn to live with blindness. And as I said, I took a course for low vision and no vision and learned so much, and this was even before my disease had progressed at that point. The point is, the information and education you can learn now will certainly make it a lot easier for you to learn to live with it.

GUY EAKIN: That’s so helpful. I think one of the questions that people ask, that we often at BrightFocus hear, is “How do I know that I’m getting an appropriate treatment?” And maybe I’ll ask both of our guests, what are the questions that we should be asking of our eye-care providers? Are there, for instance, any treatments that we should avoid? Deanna, how did you approach making sure that you were getting the care that you wanted?

DEANNA: Well, first of all, I had extreme confidence in my retinal specialist. I felt from day one that my interests were at heart, and certainly his experience and his own background in macular degeneration were helpful to me. I learned about him through some medical friends that I had, and I started going to him. So I started out with confidence in my doctor. As far as what treatment? I had to go by his suggestions.

First of all, when I first had it there weren’t any treatments, as there are today. As new things came along, he would tell me or I would ask him, “What’s new, doc?” And he would tell me, and then he’d say, “I think this is good for you.” I think that at one point [I received] one of the older treatments known as photodynamic therapy with a drug injected into my arm. That was the source that saved my vision in my good eye. That one did, and injections weren’t even heard of at that time. And then when [eye] injections came in he was reluctant to try them because the PDT was working so well. But as time went on he did try a combination and eventually I went to the [eye] injections only. So I followed his lead and I feel very, very happy with the results. I think you have to have confidence in your doctor, as well as learn and read what these things do and ask the questions.

GUY EAKIN: So, Dr. Brantley, that sounds like really great advice. Is there anything that you would add to that? And are there any specific therapies that if somebody put in front of you you’d say, eh, maybe a second opinion would be in order?

MILAM BRANTLEY: Yes, it is hard—Deanna talked about the importance of having confidence in your retinal specialist—so how could there be a better answer than that? You know I do think it is important to find that right person that you are comfortable with. In terms of finding out if there are trials for you, finding out what the right therapies are, all of that revolves around finding the right person that you trust to help take care of your vision.

She mentioned photodynamic therapy or PDT. In my career I started about the same time that PDT started. It was getting approved when I was in residency. That was so much better than what we had before, it was great! And then when the first injectable came along, that was about the same. And the second injectable drug came along, it was so much better than the PDT that it did not take long for the entire community—retina community or treatment community—to know that that’s really the way that you needed to go. I would just say that, any place worth its salt is going to be talking to you about [eye] injections, maybe mentioning trials that could be on top of injections. If [your doctor tells you] your only option is PDT then there’s someone else out there. But I don’t see that happening very frequently in the country.

GUY EAKIN: Well, thank you. Some questions are coming in about surgical treatments, and we had a couple that just want an update on possible surgical interventions. But within that there’s another question. “The doctor said there is a pucker” in Tommy from Louisiana’s eye. What’s a pucker? And what are the treatments? Are there effective surgeries? And are there effective surgeries for macular degeneration, in general?

MILAM BRANTLEY: Very good question. Macular pucker is not related to AMD; it is a different thing, but one person could certainly have both. A pucker is a wrinkling of the retina, due to one of a couple of things. Either you can simply have some scar tissue grow on the retina—which is not uncommon and may or may not have a reason—and that scar tissue then contracts and causes a wrinkle in the retina itself, which causes a distortion in your vision. It can also come from something called vitreomacular traction, where the gel in the back of your eye pulls a little bit on the retina and causes distortion. Both of those issues are definitely surgically treatable.

You can have a real surgery, where instruments are placed in the eye, and that inhesion is broken or that scar tissue is removed, and there’s a very good chance—over 90 percent—that the retina will go back to its normal shape and things will be returned to normal. A lot of times vision gets a lot better from that.

If you’re being treated for wet macular degeneration and macular pucker at the same time, we think of the macular degeneration as more urgent. That needs to be dealt with, and you’ve got to get the injections, and you’ve got to get that done to get that fluid to settle down. At that point, it might be a time to try macular pucker surgery. There’s some thought, too, that having a macular pucker makes you need more treatments because it just lessens the effect of the drug. That’s not a definite, proven clinical conclusion.

In terms of surgical advancements for treatment for macular degeneration itself, there’s really not much new right now. Unless you consider stem-cell placement as being a surgery or gene therapy as being a surgery, and they are—but they’re not like a structural surgery where you’re trying to fix it. If you’ve got a scar on the back of your eye from macular degeneration, a retina surgeon can’t just go in there and take out that scar and make everything go back to the way it was. There was a big trial back in the 90s that tried to remove those new blood vessels that leak, called the submacular surgery trial. The bottom line was it didn’t work out so well. And other treatments have become much better since then. We’re really looking for stem cells or new drug therapies, or therapies in addition to our anti-VEGF injections right now for AMD, more than we’re looking at surgical options.  
GUY EAKIN: We’re starting to run out of time, and I want to thank so much Dr. Brantley and Ms. Deanna for taking time to speak with us today. And thank you certainly to everyone who joined us on the call and asked the questions.

We heard a lot today about horizons on macular degeneration; we learned about medical horizons; we learned about the status of stem-cell research and gene-therapy horizons. We talked some about personal horizons and how the disease might progress. And we heard especially from Deanna who reminded us that we probably shouldn’t think about macular degeneration as blindness, but we can talk about it as living with the vision we have and taking advantage of enjoying the world with the vision that is remaining to us.

We will be posting a recording of this conversation and a large-font transcript of the call on our website within just a couple weeks, in case you want to refer back or tell others about the information we shared today. If you registered for today’s call through our website or phone call, we will email you with the information. You can also listen and download the past chats on iTunes and SoundCloud.

Our next chat is going to be specifically on treatments for macular degeneration. We’re going to drill-down on the existing treatments, what they are, how they work, what we can expect with existing treatments. That is going to take place on Wednesday, April 30 at 1:00 p.m. EDT, 10:00 a.m. PDT. We will encourage you to register and submit your questions in advance. We will be sending you a reminder of that coming up, and you can register for the April chat right now. You can also request free resources on macular degeneration, like our brochure Macular Degeneration: The Essential Facts, 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.

We’d love to get your feedback on these chats by asking you one short question, and you can actually answer this question by using the keypad on your telephone. So here’s the question, it’s very simple: How would you rate our telephone chat? How did we do? You can press 1 for “very helpful”; press 2 for “somewhat helpful”; and press 3 for “not helpful--you guys have some work to do.” Those numbers again are: press 1 for “very helpful,” press 2 for “somewhat helpful,” and press 3 for “not very helpful.”

As we are winding things down, I just want to remind you that the BrightFocus chats are held on the last Wednesday of every month. To find out about upcoming chats, just give us a call or check our website for updates. Thank you everyone for your feedback. If you’d like to leave a comment after the call, just stay on the line. Thanks again, thanks to our guests, and thanks to all of our callers, all of our speakers. Thanks from the BrightFocus Foundation. Have a great day.

 

Last Review: 02/26/14


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