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- [00:01]
A
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. Matt McCumber 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. McCumber. So great to have you.
- [00:30]
B
Thank you so much for having me, Ricky.
- [00:32]
A
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 just kind of the questions about what retina specialists do and that kind of thing, 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.
- [00:57]
B
Yes. Thank you. So I am a retina specialist practicing in the Chicago, Illinois area. And then 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.
- [01:35]
A
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.
- [01:57]
B
Yes, we take care of a number of the 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 retinovascular problems of the retina like branched retinal vein occlusion, central retinal vein occlusion. We take care of people with inherited retinal diseases like retinitis pigmentosa, Leber's congenital amaurosis, Stargardt's disease, things like that. And there are evolving therapies for some of those at least, and 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.
- [03:14]
A
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 or what have you, 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?
- [03:55]
B
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 though have patients referred from internists, for instance, particularly if they have diabetes, because all diabetics should have a 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, illinoiretina.com where we mention our physicians, our offices, also our clinical trials. And some patients go there and see clinical trials that might benefit them and then contact us for evaluation.
- [04:59]
A
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?
- [05:11]
B
Anyone can go to the website. Many of the clinical trials are multi center, 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 even would provide transportation from farther away, sometimes even airfare, if they wanna see us.
- [05:48]
A
That's amazing. I love that. So illinoiretina.com and we'll have that website in our show notes, if you didn't catch that. So 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 about. Can you just mention maybe, you know, a couple of those and what people come in asking about and then what tips you offer in response to that?
- [06:23]
B
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, loss of vision is one thing that worries people, second only to, you know, life threatening disease. So it's also very common to have vision problems. So 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 one, for instance, 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 and 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, wet age related macular degeneration used to be the leading cause of irreversible blindness and it no longer is because we have treatments that help prevent vision loss. So we want to catch it early. So that's one thing that, you know, 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. We also have something too. Several medicines have been FDA approved for geographic atrophy, which is the advanced dry form of macrogeneration. And we've only had treatments there for the last couple of years. We have a number of clinical trials, 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 in 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.
- [09:18]
A
You know, 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 there's a lot of information to take in. In. 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 kind of would tell patients that they generally don't bring up on their own, but it would be helpful for them to know.
- [10:00]
B
It'S an excellent question? Yes. 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 we'll. 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 things, 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. You know, for many conditions, patients can go on and continue their normal lives. If they need surgery, for instance, you know, they will need considerable support, sometimes for several weeks after a 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 inherited retinal disease or a condition that is frequently progressive, like geographic atrophy, you know, they have to think seriously, you know, 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, you know, Ubers, things like that, so people can get around. But 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.
- [11:57]
A
Yeah, I think that's important because 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 have you 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. It seems like, 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 maybe in the research stages or perhaps they're available right now as of very recently that have you really, really excited.
- [12:57]
B
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 injection 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 at 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 generation, 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, very close to FDA approval where patients may no longer need injections at all. We have a number of patients in the 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 retina 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 Retina 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 pillar in fact which may slow progression of diabetic retinopathy. So how wonderful that would be. Oh, very powerful for millions of people around the world if we can prove its effectiveness so 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 Luxturna for one form of Leber's congenital amaurosis. It's a 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. And 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 gonna determine when we complete from the study which patients we should treat and so better our management for that condition. You know, let me mention too, please, you know, in these trying times, unfortunately we're facing cuts in payments for treatments but also funding for the National Eye Institute and the National Institutes of Health. It actually would make a big difference if you can contact your congressman, Senator and stress how important it is for the National Institutes 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, you know, 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. You know, there's a lot of things that could be done.
- [18:13]
A
Dr. Macomber, 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 a resource that you can go to to 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?
- [18:41]
B
Well, Ricky, it's been a real pleasure talking with you today. Yes, you can go to illinoiratina.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 Iwiki, which provides a lot of information, 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 Spectrios 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 you know 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 for sure.
- [19:51]
A
And we'll have all of those things in our show notes. Again, Dr. Macomber, 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.
- [20:04]
B
My pleasure. Take care.
- [20:07]
A
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. Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email@podcastadleyhelps.org that's P O D C A S T hadleyhelps.org or leave us a message at 847-784-2870. Thanks for listening.