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17. Understanding Vision Loss and Preventative Care

Marissa: On Legally Blonde & Blind. I spend quite a bit of time talking about what it's like to be a blind student in Washington, DC. However, that does not cover the vast majority of experiences within the blind community, which is why I am very excited to have a special guest Sean Curry, Assistant Director of Programs at Prevention of Blindness society, to talk more about vision loss and the importance of preventative care. Tune in to learn more about how income, transportation, and other social determinants of health influence access to vision care in the United States and what we can do about it.

*Intro music*

Marissa: Welcome back to another episode of legally blonde and blind. I am so excited to have another guest. Sean Curry, Sean, take a minute to introduce yourself and then talk a little bit about why you're here today and what you do for the Prevention of Blindness Society.

Sean: All right. Thank you, Marissa. And thank you everyone for listening in today.

My name is Sean Curry. I'm the Associate Director of Programs at the Prevention of Blindness Society of Metropolitan Washington. We are a vision and eye health nonprofit located in the DC Metro areas, serving DC proper suburban, Maryland, and Northern Virginia. And we've been in existence since 1936, and we're dedicated to the improvement in the preservation of sight and quality of life. And we do that through services, education, and championing healthy vision for everyone in our area.

Marissa: Could you sum up exactly what POB does in the DC Metro area? Like what are some of the services?

Sean: Yeah. So every year we serve around 10,000 community members, we do this through a suite of what we call sight-saving programs and these include the entire range of ages as well as the entire range of vision levels. So we have a children's vision screening program where we go into primarily preschools and elementary schools, but we also go to secondary schools to provide vision screenings. If a child fails the vision screening, then refer them out to a doctor and follow up with them to ensure that they are able to get to an eye doctor that they need to see. In addition, we have a children's mobile clinic, so we do the screening, but then we also have an eye doctor on hand to perform the exam on the same day. And also to prescribe them two pairs of eyeglasses for free if they need.

In the adult world, we do have an eyeglasses clinic for those who are either underinsured or uninsured. So folks who maybe need a pair of eyeglasses, but for one reason or another, their insurance doesn't cover it, or they're just not insured. We can provide them with prescription eyewear at a much-reduced cost than what will be typically out of pocket for them. We also then have an adult glaucoma screening program and visual acuity screening program, very similar to the children's program, except we go to health fairs and places of work, government buildings, and so on and so on and so forth to provide these glaucoma screenings and follow up with them to make sure that they get their eyes checked out if they need.

And then finally are our low vision programs and these include a resource and support group network, a low vision learning center and resource center, and then low vision rehabilitation. We work with a practice that has doctors on hand who specialize in low vision rehabilitation.

Marissa: That's great. There are so many services that your organization provides ranging from more of preventative care to some of those rehabilitative services. I think you guys really cover the whole vision loss playing field. It's interesting because when I was younger, I used to wear glasses. I don't anymore. But it was, you actually were not covered by my insurance because it wasn't quote unquote medically necessary for me to have them. So I was very privileged to be in a position where my family could afford the rather expensive prescription because I have such low vision.

Sean: Absolutely. Yeah. It's always interesting to see what insurance companies deem medically necessary.

Marissa: Now to get started, why is preventative care so important in eye health?

Sean: Yeah, that's a really great question. And, you know, preventative care and eye health is very important. There have been multiple studies that look at, and I'm going to focus on just looking at it at an individual level. There have been multiple studies that have shown the cost of vision loss per person goes up very quickly, as we get to more progressive vision loss.

So. If you're able to catch a lot of these eye diseases early on, primarily the aging eye conditions, such as macular degeneration, glaucoma, diabetic eye disease, and cataracts. If you catch them early and get treatment early on, it can often prevent unnecessary vision loss from happening. So you may eventually go blind, but you know, if you don't go blind until you're 130 years old, you know, chances are, you may not make it that long. So you may never go blind in your life.

In addition, even with the young, there are, more, um, genetic related diseases that affect children and young adults, such as, you know, RP and Stargardt's and that kind of thing. Preventative care, you know, getting your regular eye checkups and taking care of that is still really important to try to slow the vision loss from happening, or at least, extend the amount of the number of years you have with, good enough eyesight to where you can learn about all of the resources, services, and technologies that are out there so that you are better prepared whenever things do end up getting progressively worse.

So there’s a huge cost to losing your eyesight, And again, you know, especially with the aging eye conditions, in addition to the cost of it just, the other thing too, is just, you know, life quality and having your vision for as long as possible is so, so important. A lot of folks that start losing their sight and, you know, we see a lot of, we, we do work a lot with older aging adults who are losing their sight more vision that they have, or the longer that they have enough vision to learn about all the resources and services and technologies. Life quality seems to be better whenever we work with them and provide them what they need to be able to do that and to age in peace as well as maintain their independence.

Marissa: No, I agree. I think it's really interesting thinking about degenerative eye conditions because you don't even have to, you don't just have to think about how am I going to function with the vision I have now, but you almost have to prepare for the future when you could lose more division or even go completely blind. A lot of training centers actually we'll have you do everything completely blindfolded, just so you get a sense of what it's going to be like in the future, but it's even harder if you're older and you don't have the time or capacity to adjust to it as well as you could, if you were younger or if you don't have access to a training center to begin with. How often should people receive eye exams and should the frequency increase?

Sean: Yeah. So the general rule that you see from, organizations such as the American Academy of ophthalmology is that you should get a comprehensive dilated eye exam every five to 10 years until you hit the age of 40. And then from 40 to 60 or 64, it should be every one to two years. Then once you get to the age of 65, you should be getting on every single year.

This has a little caveat, though, a little asterisk. If you have an eye condition already, you should definitely go as often as the doctor recommends. Younger adults get eye exams every year, even less so depending, even more frequently, depending on the eye condition that they have. And then older adults, you know, if you have age-related macular degeneration, their leading cause of vision loss among older adults, you may have to go every six to 12 weeks to get a shot for wet AMD or for regular checkups every three to six months as well. So it does depend on what you have, but if you don't have anything, any problems, now, the general rule of thumb that I said earlier is the best way to go about it. I try to get an annual checkup every year. Anyway, I don't really have any vision problems personally, except wearing eyeglasses, having prescription eyeglasses. But really, you know, getting that annual eye exam is really beneficial for us. And if you're in, especially if your insurance covers it, there's no reason not to go get one.

Marissa: I agree. So what is the current state of vision care access in the United States? Especially in the DMV area, which POB serves?

Sean: Yeah, so I have most of my knowledge in the DMV area. I will say, you know, there seems to be a lot of repetitive patterns from research that I've read on as well. From what I've heard from others throughout the rest of the country, vision care access, you know, it's getting better year to year. The major issue, you know, there's not really a shortage of eye doctors per se. The major barrier seems to be insurance. Most vision care does not get covered under your medical insurance. You normally have to get vision care insurance as well. Which you know, can add up. And, it's not, it's something that people don't think about until they need to go get their eyes checked.

So it really comes down to public insurance, such as Medicaid and Medicare. Medicaid is the insurance that covers those of us who are lower-income primarily. It does a decent job in the three states that we're in now, Maryland, DC, and Virginia. After Medicaid expansion occurred most recently in Virginia, I believe in 2019 or 2020, it does cover a larger percentage of people that really could benefit from it. And you typically get an eye exam covered every one to two years and a pair of eyeglasses every one to two years as well. So that's a good thing, that's a good thing to see. Those of us on Medicaid, you often have other, um, social determinants of health, um, out there other problems that you have to overcome such as transportation or getting off of work, which can be very difficult as well.

In the world of Medicare, at least traditional Medicare doesn't cover eye exams, except for a couple of qualifying things such as if you're a high-risk glaucoma person you're diabetic. There are some other options as well like post-cataract surgery and all of that. So you oftentimes have to buy an extra plan via Medicare advantage or Medigap to be able to get the vision care coverage

Marissa: So are there, so what are the options look like for people who are on Medicaid for eye care?

Sean: Yes. So we actually, over the COVID-19 pandemic, we developed, we completed a project identifying the eyecare practices, both optometry, and ophthalmology in the DC Metro area, the area we serve. And, we identified, you know, ones that accept Medicaid as well as Medicaid. And if they're accepting new patients and so on and so forth, one, one of the things that we found though, first is that most, every practice will accept Medicare. So that's good. That's a good sign. However, when it comes to Medicaid, it seems that it changes frequently whether or not a practice accepts Medicaid. Unfortunately, Medicaid is not a profitable Insurance provider for a lot of practices. So they need, you know, they gotta, they gotta be able to keep their doors open as well. And Medicaid doesn't reimburse as well as a lot of private insurances, but there are still a lot of practices that accept Medicaid.

Marissa: So are there certain communities that are disproportionately impacted by blindness and vision loss? I know you talked a little bit about social determinants of health beforehand, but I think it'd be great for my listeners if you could explain what that is and how that relates to vision loss.

Sean: Sure. So the social determinants of health are the other factors that impact whether or not we get healthcare and maintain healthy minds, healthy bodies. A lot of it has to do with factors that are related to income, housing, transportation, food, security, your living environment, so on and so forth. And. With social determinants of health, you tend to see that those have a lot of people who live in more rural areas, as well as those who are in more lower-income areas as well tend to have more of these social determinants that impact their abilities to get to an eye doctor as well as just general health care as well.

A big one in the DC Metro area. Well, there are two big ones. One is transportation. If you're ever lived in the DC Metro area, you know that transportation can be difficult. The good news is that the Metro system in DC is actually a pretty good one on the east compared to the other east coast ones. And there is a disability service metro access card out there that covers that as well. So it is a decent one. The problem is that when we get out to areas such as the big one, for me, that I've noticed is Prince George's county. There's not a whole lot of Metro stretch out that way. And they're really, there's not as much built up over there. So that can create a barrier if we don't have a car to drive to and from places.

The other thing is the cost of living in DC. Metro is pretty high. And, so a lot of people who may be living at only, even at even 300%, or even at 300% of the federal poverty level that is still, you know, just barely at what's called, you know, a living income or living wage. So it's expensive to live here. So people then will move farther outside or they'll be stuck in areas that are not great areas to live in. So it can make getting your eyes checked out even more difficult as well.

Marissa: Okay. And it's probably even harder if you're working a job for longer or off-hours and you can't make it to an eye clinic when it’s open.

Absolutely. Yeah. And, you know, I like to give an example. We had a mother come with her child because we had a mobile clinic. And the mother, you know, she was a single mom who had two, two kids, both elementary school age, she's working two jobs trying, trying to pay, you know, being able to keep food on the kid's table and keeping a roof over their head, and they, you know, one of the jobs is a night shift. The other job is a swinging schedule that she doesn't know about until two weeks before. So it's very difficult to schedule eye care exams, let alone well-child visits and all those other things that you have to do for a child. If you don't know what your schedule is until two weeks beforehand. And you can always ask off and, you know, take the time off, but then, you know, you're not going to get paid for that time period, which can be a problem. And also some employers may not appreciate you taking time off, um, with only a two-week notice or asking for extended time off for things such as getting an eye exam.

You had asked about whether there were certain populations that are affected more by blindness and vision loss. There are some, there are a couple aging eye conditions that are pretty genetic, that seemed to follow some genetic factors. So things such as glaucoma impact African-Americans more. I believe the most recent state study was three to four times as likely if you're African-American, and then cataracts, you know, with cataracts, most people are going to get cataracts in their lifetime if they live long enough. If you're diabetic, you are at high risk of getting diabetic retinopathy. So, you know, look at the studies that show an increased risk of diabetes among different populations. And it seems to impact those of Hispanic ethnicity as well as African-Americans a little bit more than Caucasians. But again, you know, a lot of this has to do with genetics as well. You know, the example of glaucoma is that if you have a brother or sister that has glaucoma, you're six to eight times as likely to get it. So there's definitely a genetic component.

Marissa: Yes. It's interesting too, because I did an episode a few months ago about gender and blindness, and there are even studies indicating that women are more likely to experience vision loss from conditions that are preventable because of lack of access.

Sean: Yeah. So it makes sense because on average women live longer. So they're at then, you know, the longer you live, the riskier you have of having an aging eye condition. But there also is the idea that you know, women are providing for their family, especially in some of these other, you know, communities around the world. So they don't really put their own health as a priority until things are too late.

Marissa: So my next question for you is how has the COVID-19 pandemic impacted access to care and POB’s initiatives?

Sean: Yeah, that's a really great question. COVID has had such an impact on healthcare in general and in the world of vision care. I think it has impacted for at least in the first three months of COVID a lot of eyecare practices weren't open except for absolute emergencies, such as, those, those who have wet AMD or diabetic eye disease that need their eye shots, or those who have glaucoma to get their eye drops. But a lot of folks didn't go see their eye care provider for an extended period of time. And another thing that we're seeing now is a lot of children are becoming increasingly myopic or getting myopia from the extended screen times. Now, you know, they went from being in person in the classroom to virtually all, all hours of the day. And, they've seen a correlation of an increased number of children who are shortsighted and need eyeglasses. So there's definitely something going on with that. I don't know a whole lot about COVID causing any sort of or increasing chances of vision loss. I don't believe that there's been enough information at this point about that.

The lack of access to care at this point, it's primarily lack of access, or maybe not lack of access, but fear of going out to the eye doctor, going into the doctors because of COVID. I believe it's starting to go down though increasingly over the past year or so with people getting vaccinated and more care being opened up and all of that sort of thing. Getting back to the new normal as people are calling it.

Marissa: And how has this impacted what POB does for the community?

Sean: Yeah, so POB, we had to move everything virtually. And one of the first things we did whenever we had to move virtually was recognize that those who are vision-impaired or who are legally blind isolation are already a high risk for a lot of people with these conditions and with COVID happening, it's just going to get even worse.

So we had, we realized, all right, we need to pivot quickly here and get connected with our clients. So what we did was we created a town hall where one of us, myself, and one of our low vision doctors, led and facilitated this town hall to keep folks connected with the latest news. And initially, it was all the latest information and resources for COVID as well as, you know, everyday living things such as, how do I get my groceries now that I can't go to the store. But then it's now transitioned to focusing more on topics that are interesting for this community such as resources and services and newest technologies and the latest research and that kind of stuff. So we really pivoted hard there. These town halls are still going on now. Our resource and support groups had to move to virtual. A couple of them decided to take a hiatus. Now a lot of them are back up and running thankfully, and we haven't really had a huge drop-off. I attribute a lot of that to our newsletter. That's still one out as well as the town hall, keeping people connected with what we're doing in, you know, keeping them connected with others experiencing vision loss.

Marissa: Oh, yes, it is great to have that community, even in a virtual environment, keeping those people connected. And is it, and is it possible to do telehealth eye exams or consultations? Are you guys exploring that at all?

Sean: Yeah. So the eye, our low vision specialists, did a little bit of telemedicine for a while. But as soon as they could get back to meeting in person, they transitioned more to that. I believe they still do a little bit of telehealth, but most folks are now electing because you really get most of your benefits in person when it comes to low vision rehabilitation. They're electing to come in person now. So that's what we're doing for the most part.

Marissa: Yeah so in my state’s commission for the blind, they had virtual services for over a year. So it was pretty challenging because I was learning how to use a white cane and I only did it online.

Sean: Yeah. And you know, the other thing to keep in mind is a lot of our population is older adults who maybe are not the most technically sound. So now we're asking those who are not technically sound, who are losing their sight to figure out how to get on a zoom. So, you know, most of them have figured it out by now and for over a year now, but you know, those first three months it was very difficult. I mean, it was difficult for the average Joe, let alone someone losing their eyesight who can't see the buttons to click on the internet.

Marissa: Yes. So pivoting, what people can do for the Prevention of Blindness? How can people really support this mission and contribute to your cause?

Sean: Yeah. So, first, you can always visit our website, your, to see more information. And there's a donate button in the top right. But if they want to volunteer, I would recommend just giving us a call or shooting me an email and I'll be more than happy to connect you to, with what you need to be connected with. So my email is Our website is your And you can give our resource hotline, our low vision resource hotline, a call, which is located at our low-vision learning center, which I don't think I've talked about, uh, quite, quite yet, but, uh, it's a really great service to the community. The hotline number is 301-195-4444.

Marissa: That's great. Thank you for sharing. And how can people spread awareness of the importance of getting eye exams? I know the holidays are coming up for a lot of people. So how do you recommend talking about this with family members and spreading the word?

Sean: Yeah. So if I'll start with, if you have an eye condition and it's, it has a genetic factor to it such as glaucoma, or, you know, RPE or Stargardt's anyway, let your close family members know about it and tell them, you know, you should really just consider getting an eye exam it's affected me and there is a genetic component to it, so you have a higher risk of getting it. And you know, if you know, there might be pushback, but just, you know, just kindly say, you know, really recommend, I want to have your best health in mind. And I'm only saying this and recommending this because I care about you. So really just that sort of way. And if they want to learn more, don't be afraid to share a little information.

You may know, there's a lot of information about these eye conditions and diseases on our website that you can share, um, as well as links to these, these conditions as well. Also on our website is a resource guide book that we have for the DC Metro area with all the resources, services, and technologies available to those of us with low vision or legal blindness. So that is available if they have any questions about finding different resources and services.

Marissa: I think there could be a lot of fear and pushback about getting these eye exams for family members of somebody with a genetic eye condition because I think there's so much fear surrounding blindness, but it doesn't have to be, it doesn't have to be a tragedy. Sight doesn't have to equal quality of life. There are so many resources and technologies out there. And I think making people more aware of them can help relieve some of that stigma surrounding vision loss.

Sean: Absolutely. And the other thing too is a lot of these eye conditions may not have early symptoms where you may not even realize that you're losing your sight because it's progressing very slowly. So, you know, a lot of the times you always hear that term, you know, ignorance is bliss, but when it comes to your eye health, that is not the case. Get it checked, get yourself caught. If you have something it's better to catch it early and get treatment. And get treatment early on and also to learn about these resources and services and technologies early, it's a lot easier to learn how to use this kind of stuff and do your own research when you have more, more vision than it is with all of a sudden, you can’t read anything. And then you're trying to learn and research without being able to see, and you don't know how to do that yet.

Marissa: And finally, my last question for you is, how does POB ensure that blind people or people losing vision are involved in your organization's efforts and are really playing an active role in this kind of activism?

Sean: Absolutely. So what we, we actually employ, um, let's see. 1, 2, 3, we have four employees now that are blind and vision impaired. So we, we really like, we really like to engage those, especially with our low vision programs. In addition, You know, it's always great to, don't be afraid to be an advocate, join one of our resource and support groups, because that's a great way to get connected with others experiencing vision loss. It's a way to be a self-advocate or to advocate with others, to show them, or teach them or explain to them all these resources and services. Folks are always trying to learn. And if you have information to share, that's a great place to share. It's a great place to also meet others, experiencing vision loss, and, you know, form long-lasting relationships or connections there.

Marissa: There really is nothing that compares to learning from other blind people. And that's something I've especially realized after starting this podcast is that there so much you can gather from the experiences of older blind folks. Because I think even like cited mobility instructors, for example, they don't know the lived experience of being blind 24 7. They may have to be in a blindfold for an hour for training, but they don't really get that experience 24/7. So it's really valuable to be a part of these groups. And having an organization that facilitates these connections is really special.

Sean: Absolutely. And you know, one thing to one thing I've also, and this might be helpful for those of you who are trying to connect or share with others who have just lost their sight is that being patient is the most important thing with a lot of this because there's not just the act of having to learn about these resources and technologies and whatnot, but there's also the emotional component of losing your sight, especially those who have had sight their whole life. And then all of a sudden they can't see. There's a major emotional component to it. And just, you have to realize and recognize that it's not just learning about what's available, but it's also accepting, as you said earlier, that this vision loss has happened. We got to move on because we still want to be able to enjoy our life. And there's a whole aspect there that has to be addressed as well. So just being patient and supportive is so, so important to, um, getting quality in, um, getting high-quality outcomes out of folks, which is what you want at the end of the day.

Marissa: Well, thank you so much, Sean, for joining us today. Is there anything else you'd like to add before we go?

Sean: I don't think so, Marissa, I really appreciate you taking the time and for those of you who don't know, Marissa has done a really great job with her work at her university and has been a contributor to a really great service that they provided to us recently with a marketing campaign. So thank you, Marissa. You do a really great job in that group and I appreciate all of that. And I appreciate that you have this podcast as well for advocacy and connection.

Marissa: Thank you all for listening. I hope you enjoyed today's episode. I found talking with Sean really insightful and it helped me gain a better understanding of the challenges associated with vision loss. There are so many ways to live and enjoy your life that isn't reliant upon sight, but if that's what you've been used to for the past 40, 50, or 60 years, adjusting to that vision loss is going to be a huge adjustment. And you're probably going to mourn the loss of that. I was thinking about it this way. I absolutely love to get outside and walk. It's my favorite way to exercise and relieve stress. So if I were suddenly in the position where I was paralyzed and couldn't walk, I would initially be devastated that I could no longer partake in this hobby. Does that mean I would be miserable for the rest of my life? No, but it would be a huge adjustment for me.

Overall, I hope you learned more about vision care in today's episode and how you can help Prevention of Blindness. If you liked today's episode, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcasts, or anywhere else you get your shows. You can also stay up to date by following my social media pages on Facebook and Instagram @legallybb_.

Thank you for listening and I hope to SEE you soon.


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