Transcription excerpts from this episode

00:02

Welcome to MyMacDLife empowered by The SupportSight Foundation. This podcast is about macular degeneration and the devastating impact it has on millions of people and their families every single day 365 days a year. Our mission is simple to bring hope, optimism, perspective and education to our listeners to tune in, buckle up and put your listening ears on.

00:34

MyMacDLife podcast is generously supported by Regeneron.

00:45

Welcome back to MyMacDLife. Our host, Jeff Ostroff and guest Kira Baldonado pick up where they left off, in part one.

00:55

I have a few other things that I’m going to want to ask you here, Kira. I’m very curious about these things. I’m sure the listeners would be as well. This is kind of a broad brush question. This podcast, MyMacDLife will be heard by people all over the United States. You talked about the federal legislation. I know that there’s a lot going on now where we’re kind of leaving things up to the states. I won’t get into details. My question for you is are you having from the perspective of Prevent Blindness, a different impact on states and trying to advance your causes for those with low vision and their families and caregivers?

01:43

I think at the state-level, what really drives it is a sense of readiness. And this is a way that people can become involved. For states to be able to address low vision needs, vision impairment needs, you need to have the State Department’s ready to really help drive some of that action. You need to have community organizations understanding the need and the readiness to do so you need to have the data to help drive the allocation of funding, whether that’s a grant that somebody writes for their program or state budget allocation, you need to have that data. 

So there’s a lot of things to kind of get ready to go. In order to make that happen. There are a few state examples out there who are taking steps to do that, well, these are groups that tend to have community foundation, and patient led coalition’s that form. So somebody’s really interested in seeing state-level change, seek out the coalition or start to drive the formation of a coalition of people that say, “Hey, here’s what’s happening for vision, the visually impaired and the needs in our state. And let’s start to make some differences.” So bring together the visionaries in your state, again, a vision pun intended, to bring them together, find the need to tell the story, and then start to seek the right kinds of policy and action change so that it typically works best if it’s a groundswell up. 

02:09

So like an example in Ohio, we have a group of individuals that came together in Ohio’s Aging Eye Public Private Partnership. And that was driven in part by our affiliate for Prevent Blindness in Ohio. And they convened a coalition from the Department of Aging, Department of Health Insurance, universities, patients, providers, to come together to say, Ohio has an aging population, there’s 11 million people and about 60% are in an aging population, aged 65 and older. So it’s a big issue here. So we need to take steps to address the vision issues of that population. And how are we going to make policy changes, practice changes, get resources out there to help them. So they have made changes to policy and practice at the state-level. They have developed resources; they have changed the way State Departments provide information about vision, all because a group of people came together and started talking about a need. So that can happen at any state. 

04:26

Another example was in New York. They’re taking steps to make New York a healthy aging state. So they are looking at ways that older adults can stay socially active, physically active, have access to medical services, and now they’re starting to look at ways that they can integrate vision into these practices. So again, it’s an effort where people have identified an opportunity to integrate vision into what’s already happening. So that’s my recommended approaches, you know, get a group of people that are really passionate about it, come together or understand the needs and the stories, and then seek ways to integrate vision into what’s happening there. And that can be practice, policy, and certainly needs to be patient led.

05:14

MyMacDLife podcast is brought to you in part by Centric Bank, Healthy Vision Association, Finkelstein and Associates, Novartis, Regeneron, Vispero, and from anonymous donors.

05:30

Well, I appreciate your saying that. I appreciate your naming New York and Ohio. I would ask you, I, I’m a person who really likes to not reinvent the wheel. So if I’m listening to this podcast, MyMacDLife, and I don’t live in one of the best states. Are there resources that I can find to say, look, look what Ohio is doing. We can do that here? Are their toolkits that will empower people–because I know you’d like to empower people–so that they can either get in touch with people in Ohio or New York, or at least have access to what they’re doing, so they can replicate it in their state, which may be more sluggish?

06:17

Yeah, yeah, there are certainly a number of resources that people can look for. One of which is through our Center for Vision and Population Health, which is at Prevent Blindness. That Center for Vision and Population Health is a nationally led group of advisors and experts that are looking at the data that’s out there, what’s happening at the state-level, and then providing recommended actions that people can integrate. So if you don’t have a place to start, you can contact Julie at our office and ask about the Center for Vision and Population Health or go to our website, preventblindness.org. And look at a number of reports, resources, there’s a whole section on integrating vision and eye health with fact sheets, issue briefs and, and templates to use. So we try and make it as plug and play as possible. But again, we need to make sure we understand what’s happening at that state-level. Because if we don’t have that, that state-level data, that state-level story, then it’s not going to matter to the policymakers that are there. So we’ll provide the templates and the guidance. But we also want to make sure you understand what your story is locally, so that you can have an impact locally.

07:28

What impact has COVID-19 had on the work that you’re doing, and how it affects most importantly, our listeners, the people who have low vision, their families, the caregivers? How’s COVID-19 affected all of that?

07:43

Well, I guess there’s a lot of different perspectives we look at there for COVID-19. So organizationally, we’ll start there. We were fortunate to be able to work virtually prior to COVID. So we were in a position to kind of be ready for a time when going to the office wasn’t recommended. So we were able to continue our services and functioning for the most part in one way or another. So since we were able to keep going, we’ve noticed that there is a growing need and awareness for vision since COVID occurred. It’s actually an issue that has made legislators pay attention to vision because COVID in the realm of children’s vision has increased the rate of myopia. So kids are staying inside more, doing more time with screens, having more near work, not getting outside and getting the positive impacts of the sun on their eye growth. So we’re going to see a groundswell of myopia in younger and younger age children, because largely driven because of COVID.

08:51

Also COVID made clear and you’ve heard this time again, that there are huge disparities in access to health care. So individuals who were having problems were just magnified. So those individuals that weren’t able to access eyeglasses or eye care or vision treatments, even became more so during the era of COVID. Certainly individuals that were already undergoing treatments for, say getting injections for age related macular degeneration had issues, maintaining those injection appointments, getting to the eye doctor. If you have low vision, being able to see all the warning signs for going to the eye doctor and doing so safely were hard to engage. So a lot of people had to forego care. So we’re seeing more people with serious vision loss because of COVID. So that’s certainly raising issues and stories and, and elevating need. I guess we’ve also seen through COVID, that there’s just an increased opportunity for legislators to want to talk about the story about division as a whole and overall health so they’re actually starting to talk about it more so it’s had a bit of a positive influence. But there certainly have been a lot of negative engagements, interactions and causes of COVID to eye health that I would have rather avoided. But we’re learning from it, as is everybody else.

10:13

MyMacDLife podcast is a national award winner of the STEP program for innovative macular degeneration, patient education and for demonstrating a commitment to addressing the daily needs of people with age-related macular degeneration.

10:37

Yeah, it sounds like you’re portraying a rather bittersweet experience here, in that people, it’s being spoken about more than the issues. The flip side of that is it has exposed the differences in access to care that people receive. And this one that really surprised me was the myopia. I had no idea about that one.

10:59

Yeah, it’s kind of pushed something that was already happening to happen a little faster. If you look at other countries around the world, largely that the East Asian countries 95 to 99% of those individuals have myopia. And they’ve shown us that we are, as a population, shifting towards more screen use, less outdoor time, a lot more near work and engagement, and not getting that balanced approach to overall eye health and development than what we’ve had in the past. So we need to and currently there is some research happening, we need more research to understand what really is the driver? Is it hereditary? Is it experienced practical experiences? What are the drivers and how can we change them, but also, that means we need to be able to have access to care for these individuals. So we’re going to need to correct a refractive error that if left uncorrected, I don’t know if folks know this. But um, myopia, if allowed to become severe, can lead to retinal detachment glaucoma and increased risk for age related eye diseases down the road. So it’s not just an issue of “Yeah people need access to a pair of glasses.” This is a condition that, if it starts early, and if it progresses to being severe myopia over a lifetime really can lead to a risk of vision loss and blindness down the road. So now that we’ll have so many more people that have myopia at younger ages, over a lifetime, we’re really setting ourselves up for a tidal wave of vision issues down the road that right now we’re not prepared for.

12:42

This is fascinating to me. I’d like to have you end the discussion, perhaps on a positive note, by asking you, Kira, about as you look into the future. And you think about what Prevent Blindness and The SupportSight Foundation are both trying to do in terms of educating and advocating and empowering those who have MacD. What might you see happening this decade or in any realm, you could speak about anyone, but what are some, some hopeful things that you see that you can share with us?

13:21

Oh, gosh, there’s a lot to be hopeful for. There is. 

13:26

Good!

13:27

I see a bright future. So in the realm of treatments, we are finding fabulous new ways to treat diseases that have been untreatable for eons. Genetic therapies, as they come down the road, are just changing the lives of those who have been blind for a significantly long period of time. And there are many, many clinical trials going on right now for individuals with inherited retinal diseases. Even looking at age-related macular degeneration and diabetes related eye disease. There are genetic treatments coming down the road that will really have a significant and quick and life-changing impact. So the treatments that are coming are really amazing. So we need to make sure that we’re still able to have new therapies created.

14:25

I give to The SupportSight Foundation because I just found out that my mom has MacD and I want to be a part of the cure. MyMacDLife is important to my mom and I and we share the stories from MyMacDLife with each other all the time. I want to play any role that I can to help my mom and to help the people who have MacD.

14:45

The SupportSight Foundation is a 501 C three public charity. We rely on donations from people just like you any gift large or small. It all adds up. It fuels our mission And thank you for your money.

15:05

There is a new push for more integrated health care, better health care, that I think we’ll start to see vision being integrated into policies and practices and better ways. So people understand that if I have healthy vision of my patient, then they can maintain their use of the drugs and therapies that keep them healthy, they can stay in their home longer. So people are starting to pick up on the message of the importance of vision. We’re seeing it integrated into more government language, Healthy People 2030, grant applications, call for proposals. So it’s creeping in there. So I think we’ll only see more of that.          

And then certainly, the biggest change that I think all of your listeners can be a part of right now is just the wave of the patient influence and care practice. And I can’t say this enough, that there are so many different ways that people can be a part of the conversation, at whatever level they’re comfortable with. So it might just be talking to another individual that has that same condition, be a peer-to-peer counselor, you know, there are other people out there with age-related macular degeneration that are new to this game. Maybe you have some experience. Just talking to them about your experiences, using your voice, and your passion, and what you’ve learned, can be a huge help to individuals. And then that story can go on and shape other things in so many different ways from you know, you know, how are they marketing information out to people. So, you know, you can make that better, you know, make it meaningful, and how can you individually shape, what is really happening at the policy level. And so don’t be afraid to talk to those people who are making decisions, because they’re making them for you. So you should be a part of that. So we’re starting to see more patient-centric approaches to everything. And that is the way it should be. And that that will be a big shift over the next 5 to 10 years.

17:04

Wow, those are really great, exciting things. And one of the things that you brought out there, Kira, is it’s such a great opportunity that is presented to an individual, when they may have an issue that they’ve been dealing with, and they can somehow contribute to making somebody else’s life better, because of the experience they’ve had. So volunteering is such a terrific thing, getting involved in the advocacy, it not only is a good thing to do, but it will help that person feel better. It’ll help. It’s good for health.

17:43

Yeah, I would say that the one thing that people get back is a sense of control. When you’re using your experience in some positive way, whatever you’re comfortable with, you’re getting back control. And so that’s the one thing that I think everybody wants to have more of. And I would encourage all of your listeners to gain back that control by sharing their experience in some positive way.

18:05

Terrific. Well, I said that I was excited when we started. And you’re leaving me excited. And I think you’re probably leaving a lot of the listeners. Hopefully most of them are excited too. Thanks for joining us today Kira, we appreciate so much your expertise, your knowledge, the support that you have been providing through Prevent Blindness, of course, you know, being on MyMacDLife. And you’re working also with The SupportSight Foundation in tandem to do things that are going to help the lives of those with MacD, their caregivers, their families, and so forth. So thanks again. It was great having you on the show.

18:48

Thanks for having me, and thanks to SupportSight for making this partnership possible.

18:59

Thanks for being with us on MyMacDLife, the podcast with a vision to bring hope, optimism, perspective and education to our listeners. For more information and many great incredible resources, visit mymacdlife.org. This program is supported by amazing listeners like you. Please consider a donation to keep our mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcasts. Until next time, keep living with hope.

19:43

MyMacDLife podcast is generously supported by Regeneron.