A Chat with a Retina Specialist

Hadley

A Chat with a Retina Specialist

Presented by Ricky Enger

Ricky Enger: There's more than one kind of eye doctor and it's important to know the differences so that you can get the most out of each doctor you see in this episode. Dr. Mat MacCumber joins us to discuss Retina Specialists. I'm Ricky Enger, and this is Hadley Presents.

Brought to you by Hadley’s donors. Who know how the right conversations about vision loss can truly make a difference.

Welcome to the show. Dr. MacCumber is so great to have you.

Dr. Mat MacCumber Thank you so much for having me, Ricky.

Ricky Enger: I am delighted that you are here, and I know I'm going to learn a lot today as will our listeners, I'm sure. So, before we get into the questions about what retina specialists do I'm wondering if you can tell us a bit about yourself, kind of where you are and how you came to be on this path of retina specialty.

Dr. Mat MacCumber Yes, thank you. So, I am a retina specialist practicing in the Chicago, Illinois area, and I'm a professor at Rush University in the department of Ophthalmology. Illinois Retina Associates is the largest retina surgical practice in Illinois. We are part of Retina Consultants of America, and this year we celebrated our 50th year. I became interested in retina as a specialty when I was at Johns Hopkins in medical school. I've been in Chicago for 29 years.

Ricky Enger: That's awesome. Wow. 29 years. I imagine you've seen a fair number of patients during that time. So, I think that it's safe to say that retina specialists do treat diseases of the retina, but I'm wondering if you could just do a quick rundown of some of those common eye conditions that fall into that category.

Dr. Mat MacCumber Yes. We take care of a number of conditions that unfortunately can lead to blindness. One is age-related macular degeneration, one of the most common retinal conditions resulting in decreased vision in people over age 55. We also take care of patients with diabetic retinopathy, which is the leading cause of blindness in the US and largely preventable with good diabetes treatment. We take care of vascular problems of the retina, like branch retinal vein occlusion, central retinal vein occlusion. We take care of people with inherited retinal diseases like retinitis pigmentosa, Lebers, congenital amaurosis, Stargardt's disease, things like that. And there are evolving therapies for some of those, at least in a number of others. In clinical trials, we take care of patients with retinal detachment, an emergent problem that affects many individuals. We also take care of people with tumors of the eye, inflammatory conditions of the eye called uveitis and even infants with retinopathy or prematurity. So, there's a wide range of patients that we see.

Ricky Enger: Absolutely, and one of the questions that we get often, and it's kind of surprising, but we do have a lot of people who call, and they are struggling to find the right eye doctor. So maybe they have an optometrist or an ophthalmologist who is sort of a generalized ophthalmologist and they're struggling to find someone who maybe specializes in treating retinal diseases. So how does that process generally work in your experience? How do people find you?

Dr. Mat MacCumber Right. As you mentioned, many people might have a primary eye care provider, an optometrist or a general ophthalmologist, but when they develop a specialized problem involving the back of the eye, then they often do benefit from seeing a retina specialist. So many of our patients are referred by optometrists and general comprehensive ophthalmologists. We also have patients referred to by internists, for instance, particularly if they have diabetes because all diabetics should have an ophthalmic examination. We have some patients who find us just by friends, family who have eye problems, retinal problems, some of these are inherited and can run in families. We have a website as well, Illinoisretina.com, where we mention our physicians, our offices, and also our clinical trials. Some patients go there and see clinical trials that might benefit them and then contact us for evaluation.

Ricky Enger: And are those exclusively local to the Chicago area or can anyone go to that website and look for something that might be kind of in their wheelhouse, something that they might qualify for?

Dr. Mat MacCumber Anyone can go to the website. Many of the clinical trials are multicenter, randomized clinical trials. So, they actually have sites across the U.S., even Canada, Europe, other places in the world. But we offer these in the Chicago area. The clinical trials frequently provide transportation. So even if they live an hour or two away and may not have someone who can drive them, they provide transportation there and back. And some of our clinical trials would even provide transportation from farther away, sometimes even airfare if they want to see us.

Ricky Enger: That's amazing. I love that. So, Illinoisretina.com, and we'll have that website in our Show Notes if you didn't catch that. I'm wondering, having seen so many patients, I imagine that there are just some kind of common themes that emerge, some common concerns that people come in and talk with you about. Can you just mention maybe a couple of those and what people come in asking about and then what tips you offer in response to that?

Dr. Mat MacCumber Absolutely. So almost everyone is worried about becoming blind. Many people with low vision are extremely functional, but there's no question it impacts their life. And in fact, a loss of vision is one thing that worries people second only to life-threatening disease. It's also very common to have vision problems.

When patients come to us, they often know there is something involving the back of the eye or threatening their retina, their vision. But really the first thing they want to know is what's their diagnosis? What's their problem? What's the prognosis? Is there treatment available? What do they need to do to prevent it from getting worse or recover vision if they've lost some?

And we go through all of that in detail for many of the conditions we take care of. There are treatments for instance for age-related macular degeneration. When I started in Chicago, we unfortunately frequently just saw patients slowly go blind, legally blind. It doesn't affect all the vision typically, but it does severely affect the central vision in many cases. So, patients become legally blind without treatment. But luckily over the past 15 to 20 years, because of research done by the National Eye Institute, by pharmaceutical companies, we now have treatments that usually can prevent blindness for age-related macular degeneration. In particular, age-related macular degeneration used to be the leading cause of irreversible blindness and it is no longer because we have treatments that help prevent vision loss.

So, we want to catch it early. So that's one thing that we tell patients. If you develop distortion in your central vision, blurring in your central vision that does not get better within a few seconds or minutes, then yes, you need to be evaluated because if you're an older individual with macular degeneration, we have something that can prevent vision loss. Several medicines have been FDA approved for geographic atrophy, which is the advanced dry form of macular degeneration, and we've only had treatments there for the last couple of years. We have a number of clinical trials in that area. So, things are only going to get better. And so, I tell patients the diagnosis, I tell them if we have a treatment, we go through what needs to be done, whether it's medical or surgical that they need to follow up.

And then some cases, if we don't have something, for instance, for an inherited retinal disease, which may be progressive and we don't yet have a treatment, then I still let them know that there's a lot of aids that can be done to help them with their daily life. We usually refer them to a low vision specialist.

Ricky Enger: I think people probably come to their eye appointments with a list of questions, and at the same time it's a little bit overwhelming because it’s a lot of information to take. In many cases, the diagnosis comes as a surprise, and so people are dealing with that aspect of it. And I imagine there might be things that they could ask if they had the time to think about it, but they're coming in overwhelmed and such. Are there things that you would tell patients that they generally don't bring up on their own, but would it be helpful for them to know?

Dr. Mat MacCumber It's an excellent question. Yes, I recommend they come with questions, so they're all answered. But I remind the patients that if they think of something, they certainly can call us or go into our portal and ask a question and I'll remind them. I advise them that it's often helpful to bring a family member or a friend who can take notes for them or may think of something that they don't think of while they're there.

With regard to questions they should ask, of course, are there treatments that can be provided? How effective are they? Are there clinical trials? Are there new things that they might be able to be involved in? At least getting information about them can be very valuable and give them hope. They should ask if their condition would affect their lifestyle over time. For many conditions, patients can go on and continue their normal lives. If they need surgery, for instance, they will need considerable support sometimes for several weeks after surgery. And so, they should provide questions about how they should manage in the post-op period and then in the long term.

For instance, if they have an inherited retinal disease or a condition that is frequently progressive, like geographic atrophy, they have to think seriously. What if they lose their central vision in both eyes? How will they manage without being able to drive, for instance, or even just drive at night? They may need to change their work conditions, their work hours, it may impact where they live. Luckily in Chicago, we have very good mass transportation, Ubers, things like that, so people can get around. But in some places, some cities, rural areas, it can be difficult. So bottom line, yes, bring questions, but if you have further ones, we always tell people, feel free to follow up and ask later.

Ricky Enger: Yeah, I think that's important. I feel like people come in and think, I've got one shot at this, and if I don't remember to ask it, well, that's it for this time. And just the fact that things are available either by calling the office or going through the portal or what is really, really helpful. So my last question, and I think you touched on this to some degree, but maybe there are some other things that you can mention in terms of treatments or research or things that are happening at a pretty rapid rate, like you said, geographic atrophy, treatment for that and macular degeneration, things are improving just within the last couple of years. Are there some other things on the horizon that are in the research stages or perhaps they're available right now that have you really, really excited?

Dr. Mat MacCumber Oh my gosh. There are so many things, Ricky, that are promising for the treatment of retinal conditions for macular degeneration. To start there, we've had treatments that often involve injections of medicine to the eye, which sounds horrible, but I've done it over 10,000 times. It just takes a second or two. And most people are anxious about it initially but then realize that it's really not as difficult as they expect. It's very quick. A problem is that they frequently have to come back though for treatments every month or two months, which is quite a bit. So, there's a number of new therapies that are either available or on the horizon that can provide long-term treatment for macular degeneration, prevention of vision loss, even for recovery of vision that don't require these frequent injections. We have something called the port delivery system, which can deliver drug for a long time.

We have longer acting therapies that are finishing up clinical trials right now that hopefully would require only a treatment every six months or longer. And then really exciting, we have three clinical trials at our Oak Park Illinois office for gene therapy where almost all of the injections that we provide are proteins. And if you recall from biology, proteins are coded for by DNA. So, if we can provide the DNA for these drugs to the eye, then the eye can start making the medicine on its own. And it sounds space age, but it's real. And we have three clinical trials, phase three, so getting very close to FDA approval where patients may no longer need injections at all. We have a number of patients in clinical trials that no longer need therapy regarding other conditions, diabetic retinopathy. I'm part of the DRCR retina network, DRCR originally stood for Diabetic Retinopathy Clinical Research Network, and we have a number of clinical trials that can provide much better care that can help preserve or improve vision in patients with diabetic retinopathy. We have other clinical trials in the network as well, but it really started for treatment of diabetic retinopathy. And there are a number of new therapies, DRCR, RET network established treatments for diabetic retinopathy, either medicines or laser treatments, which are also essential for some people and sometimes surgery. So, there are a number of new things on the horizon there. We're studying a pill, in fact, which may slow progression of diabetic retinopathy, so how wonderful that would be.

Ricky Enger: Oh, very cool.

Dr. Mat MacCumber For millions of people around the world if we can prove its effectiveness they can provide low-cost therapy, which can help prevent vision loss. When it comes to inherited retinal disease, there's all different wonderful therapies on the horizon. We already have one for one form of Leber congenital amaurosis. It's gene therapy, and I think there's a number of other treatments on the horizon. A pill, for instance, for Stargardt's disease may become available within the year.

There are other treatments, so people with those conditions shouldn't give up hope. There's a number of exciting things on the horizon, and again, there are a number of new developments for low vision for those patients, and Hadley provides great support as well.

Some other conditions, let me mention, there's a very common condition called epiretinal membrane or macular pucker, which affects the central vision in patients' eyes. We have a very good surgery that actually has improved over years, but we don't know how early we should intervene if a patient has relatively good vision, but symptomatic, should we operate on those patients earlier. And in fact, I'm a national co-chair of that National Eye Institute funded study, and we are now over half the way completed with that study, and we're going to determine when we complete from the study which patients we should treat and so better management for that condition. Let me mention too, please, in these trying times, unfortunately, we're facing cuts in payments for treatments, but also funding for the National Eye Institute and the National Institute of Health. It actually would make a big difference if you could contact your congressman, senator and stress how important it's for the National Institute of Health to continue funding so we can continue these clinical trials.

Just a number of amazing things. Geographic atrophy, as you mentioned, there are new therapies, and we have a number of therapies and clinical trials for that. Just a lot of exciting things. And if you have an eye condition, which is maybe threatening your vision or has affected your vision, consider seeing a retina specialist, being screened, finding out what's out there. You want to go relatively early. You don't want to miss your opportunity for benefit and don't give up hope. There's a lot of things that could be done.

Ricky Enger: Dr. MacCumber, it has been fantastic having you here. You've been so informative and just given so much great information. Are there any final thoughts that you would leave people with, whether that is maybe your resource that you can go to look for some of these advancing treatments or just a place to get general information, anything you want to share with our audience before we wrap up?

Dr. Mat MacCumber Well, Ricky, it's been a real pleasure talking with you today. Yes, you can go to Illinoisretina.com. That's our website where it describes the treatments we provide, but also the clinical trials are all listed there to see if one may be right for you. You can also just call our office if you want and get more information. In addition, there is information on the websites for the American Academy of Ophthalmology, an organization that I've been involved in. There's something called EyeWiki, which provides a lot of information on almost all ophthalmic conditions. The American Society of Retina Specialists provides information as well, and I've been an important member there. Locally, contact your low vision provider like the Chicago Lighthouse, Spectres Hadley. There's information there. And a nice thing about Hadley is there's a phone number and you can call and get a person, and sometimes you just need to talk to someone and hear a calming voice that can give you more information. I think there's a lot of resources. Don't be afraid to check them out.

Ricky Enger: For sure. And we'll have all of those things in our show notes. Again, Dr. MacCumber, this has been a fantastic conversation. I appreciate your time and all of the information that you've given. And again, thanks so much for stopping by.

Dr. Mat MacCumber My pleasure. Take care.

Ricky Enger: If today’s conversation made a difference for you, it’s because Hadley’s donors made sure it was here when you needed it. Thank you.

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