Transcription excerpts from this episode

SUMMARY KEYWORDS

vision, individuals, people, prevent blindness, caregivers, medicare, impacted, macular degeneration, hearing, important, story, research, life, foundation, legislators, organization, provide, eye, listeners, education

00:02

Welcome to MyMacDLife and powered 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. So tune in, buckle up and put your listening ears on.

00:31

Hi, I’m Dawn Prall, founder and executive director of The SupportSight Foundation, MyMacDLife the podcast you’re listening to and tuning into right now is empowered by The SupportSight Foundation. We are a voice you can trust. MyMacDLife is the first podcast series about how to live your best life with Macular Degeneration.

00:57

MyMacDLife podcast is generously supported by Regeneron.

01:10

Hi, everyone, I’m Jeff Ostroff, your host for this episode of MyMacDLife. Today I’m excited to have with us Kira Baldonado, Vice President of Public Policy and Health at Prevent Blindness. Now I’m excited not only because of what Kira does in her expertise, but because of how important that is, to all of you. Here has been a part of Prevent Blindness since 2003. She brings with her today many years of public health advocacy and leadership experience. And I might add her efforts have involved people of all ages who have eye diseases. In fact, she’s also a certified children’s vision screening instructor for Prevent Blindness. Today we’re going to speak with Kira about some of the important public policy and advocacy work she is doing and how that affects those of you with MacD your families and other caregivers. Kira, welcome to MyMacDLife. Thanks for being here.

02:11

Jeff, thanks so much for having me here. It’s a pleasure. And I really appreciate the opportunity to talk about Prevent Blindness in our work.

02:19 

Well, I’m excited again to have you on. First thing I have to say he was I was really struck by the fact that Prevent Blindness in one way or another provided direct eye health services to over 1.1 million children and adults in fiscal year 2020-21. Wow, that’s unreal Kira. Picking up on that, can you tell us just a little bit more about Prevent Blindness and the work you do there?

02:48

Certainly. So Prevent Blindness is an organization that has always taken a public health approach to vision and eye health trying to provide early detection of vision problems getting people access to care, and helping those who may have experienced vision loss experienced a high quality of life. So with that we provide services in really three key ways. So we provide education, just knowing about an issue and knowing how you can take care of that issue is a huge help in addressing vision loss and preventing eye diseases. So we provide education for professionals, individuals, such as school nurses, or senior care providers, individuals such as diabetes educators and provide them with information they can share with those they serve. Provide them with tools and resources and ways that they can integrate vision and eye health into their work. 

3:47

We also provide a lot of education for the public. Individuals learn about eye diseases, why they may be at risk and how they can prevent that eye disease from developing or how to take care of the problem if they are impacted by it. So we do that through webinars, summits, fact sheets, issue briefs, and social media to help people understand more about these issues that may be unknown, or the first time they’re hearing about it. Age-related Macular Degeneration is not always a term that flows off everybody’s tongue right off the bat. So we all have to take a moment to learn about that. 

The other ways that we work as an organization is through advocacy, as you mentioned, we do advocacy, through all different age groups conditions and really making sure that people have access to treatments, access to devices, and that there’s adequate insurance coverage, new types of therapeutics and treatments are being developed, and that we have proper surveillance and an understanding of who’s at risk of vision problems and there’s the right policies to go with that. 

And finally, as an organization, we’re all about empowerment, we empower individuals and helping them understand their disease experience, helping them tell their story and using that story with different kinds of stakeholders to improve eye health, to improve the types of clinical trials and care that happen out there, and help people understand how their experience can impact advocacy. And then we also empower systems of care. Sometimes it seems like it should be natural for eye conditions to be detected early, and people get connected to treatment and get connected to therapies and get all the help they need. But there’s a lot of ways along that pathway that people can fall through the gaps. So we work with those systems to identify where those gaps might be. And help professionals take steps to improve those systems. So we don’t lose people along the way.

05:51

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

06:07

Wow, I have to say, I’m really impressed by the gamut of things that you are doing over there Prevent Blindness, to help people who have issues with their vision. Now, I’m curious, and perhaps some of our listeners are as well, maybe most of our listeners, what was it that made you so dedicated, Kira, to the important mission of helping the millions of people who are visually impaired? 

06:35

Well, my dedication to vision and helping people with eye health or vision loss has evolved over the time that I’ve been with Prevent Blindness. I’ve been with him almost two decades now. The reason that I stay connected has evolved as my, across my life score course and my children’s life course as well. So I started when I was a new mother. And I had a child who was supposed to get a vision screening as a part of their primary Well, child care, and working at Prevent Blindness, I was waiting for them to do a vision screening, and they never did. And so I said, Well, aren’t you going to check his eyes and he said, “Only if the parents express a concern.” And I said, “Well, not everybody knows when a child is having a vision problem, kids are pretty good at covering those up.” So I did my own vision screening on my child and his other peers at his preschool, and found that he had severe astigmatism that was keeping him from learning properly. So that really drove my early charge of making sure that proper vision screenings, education and access to care, are part of what were happening in children’s vision.

Now, over time, as people get older, as maybe many of your listeners understand eye problems can creep up. So I’ve had several family members who have diabetes who have vision loss due to diabetes related eye disease, some of whom wish that they could have their vision back even as they were having their last moments in life. So vision was really important. And also personally have family members impacted by dry and glaucoma, as well as cataracts. So all of these things, whether you’re, you’re a new mom, or later on in life, vision becomes an issue for you. And if you’re lucky enough not to have a problem yet, just hang on. If we’re all lucky enough to live long enough, we’re likely to at least have a cataract. So there’s always a reason to be concerned about vision and eye health.

08:34

Boy, Ain’t that the truth? Couple of things you said there that I can relate to, first of all, many people that I speak with, in other lines of work that I do tell me that they get involved in causes, like the one that you’re involved with that Prevent Blindness, because of something that’s happened in their lives. And in this case, it was your son. 

The second thing is, you mentioned the big D word, I have type two diabetes. And my mother had type two diabetes, and my grandmother had it. So there’s certainly a genetic component to it. And I’m very much concerned about my own vision, which is why by the way, I have an annual eye exam. And I have one tomorrow. Just to mention that to you. So thanks for sharing your story with us about how your interest has evolved over the last many years. 

I know that you and Prevent Blindness work closely with Dawn Prall on The SupportSight Foundation Kira are to provide education assistance and many other services to help those with low vision. Can you share with our listeners just a little bit about how you work together to benefit everyone who has low vision and MacD with The SupportSight Foundation?

09:53

Sure. You know, we had an opportunity to work together on a clinical research survey that was implemented last year, called Mosaic. And you know that survey was important to get out to both individuals with Age-related Macular Degeneration but also their caregivers, it’s really important to understand not just how conditions such as Age-related Macular Degeneration impact an individual, but everyone around them. Because it’s not just a disease for the individual. It’s something that impacts the family or the community that that person is a part of. So we had an opportunity to help recruit individuals to take part in this study. And thank you to all of those your audience who may have taken part in the survey, the information that’s provided really does help us shape resources and education and guidance that we give as an organization. So taking part in those surveys and clinical trials is really important. 

But the the results of that survey found that caregivers, really were impacted by Macular Degeneration and in three key ways, both emotionally, for the positive and for the negative, financially. And then on a daily tasks. Were all impacted by age related macular degeneration. Many of these caregivers were individuals who were spouses, family members, taking care of a loved one, and found that some of them had to stop work, they had financial impacts. There were concerns about you know, where this person is going to live, how are they going to function? How can they maintain, so there’s some anxiety that comes on the part of the caregiver. And so some of them were really trying to make significant changes in their life so that the person with age related macular degeneration can maintain a high quality of life. 

But as I said, you know, there were some positive influences as well. The caregivers found that giving that person assistance gives them meaning to their life, gives them a sense of fulfillment, and they feel good about being able to help, which is something that I’ve found over time as we talk with different patients and caregivers. Oftentimes, there’s a feeling of oh, I don’t want to bother individuals. If you’re an individual with an eye disease, such as AMD, I don’t want to put that pressure on my family, I feel guilty. But caregivers, family members do have a sense of fulfillment and helps them be a part of what’s happening to you in a constructive way. So sometimes it’s okay to ask for help because it helps them as well.

12:40

Exactly. And that’s it’s a great example of how you collaborated with The SupportSight Foundation.

12:50

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.

13:09

I remember back in the day, and I think the numbers have changed. They used to say that one in every two people over 50 would have a surviving parent. And many of those individuals who had that surviving parent became caregivers at one point or another. This is along with spouses. And today I think we have a situation where that’s even more the cases people are living longer. And you sometimes might even have grandparents being caregivers for great grandparents. It’s it’s a huge challenge. But as you also spoke about in the study seems to indicate there are rewards to being a caregiver. I have been a caregiver. And I can certainly relate to that. 

Kira, I know our listeners would be very interested to hear about some specific federal policy changes that are being proposed and where things stand with them. So I’m wondering, as you think about Medicare, if you could talk a little bit about the pending legislation that’s out there that might expand coverage under Medicare for such things as visual, dental and hearing services. And also, as you’re telling our listeners about that, I know they’d be interested in hearing where where things are going with this.

14:30

Yeah, yeah, we were quite excited when it was proposed as part of the Build Back Better to include coverage of vision, dental and hearing and Medicare. And as those discussions progressed, we were dismayed to see that one-by-one items were sort of picked out to try and find an agreement until all that was left was dental. We were really frustrated because we see what The Office of Budget Management proposes as the costs for each of these programs. And while hearing was expected to have the lowest cost impact on Medicare, vision was pretty close behind it, even though it has a low cost, it would have a huge impact for people who rely on Medicare to get their health care services. 

Right now individuals on Medicare are required to, you know, if they want to have access to vision care, they really do need to have a Medicare Advantage plan that would cover that. And per the latest reports that I’ve seen, you may know different, only about 25% of individuals have the funds to afford that Medicare Advantage plan. So there’s still a significant percentage of people on Medicare, that don’t have access to vision coverage beyond that provided for those on diabetes individuals that have a family history of glaucoma, or have some other connected conditions. So there’s a huge percentage of people that if they want to go out and get an eye examination, because they want to have an updated prescription, or they want to make sure they’re able to continue driving in a safe manner. They can’t do that under their coverage for Medicare. So we were really hoping to see a solution with the addition of vision and those services under Medicare through this expansion. But the stars didn’t line up. And I don’t know that many stars are lining up for any legislation at this point in time. So we really do need to use the power of our voice through voting to make sure that we have individuals in the legislature that understand the importance of more comprehensive access to health care. So that’s certainly one approach. 

One of the other items under Medicare that we also closely watch as an organization is access to low vision devices. The one of the ways that we as an organization work through this through a coalition called The Item Coalition. And so the item coalition is working to enhance Medicare, Medicaid access to low vision devices as one of their key issues. And they’re really working to do that through a couple of different ways. We’ve tried to change legislation and have that added, there hasn’t been a big appetite for that, to have somebody pick that up as their cause. And to get co-sponsors, we’ve also in are currently exploring some regulatory changes through Medicare, what’s really blocking access to low vision devices is an exclusion that was established back in the 90s, that there is no access to any tools or devices that include a lens. So that means really in their terms, eyeglasses but unfortunately, many low vision devices also use a lens to make sure provides the improved functioning for those with low vision. 

So there is a regulatory pathway that can be taken to change what’s defined as a lens and what what can be included, to provide access to these devices. So we’re currently meeting with the leadership of CMS, to see if we can make those regulatory changes that provide that access so that the power is there for the program itself, to make changes without having to go through a legislative pathway, which, as we can see at this point in time is probably going to be the more fruitful approach to getting a change for that.

18:22

Yeah, and I just wanted to comment on some of what you said, first of all, for those who are listening, who may not be familiar with the terminology, CMS is the Centers for Medicare and Medicaid Services. It’s got to be very challenging for you in trying to push this stuff ahead, and I commend you for trying to do that.

18:44

Oh, thank you. Yeah, the issue of vision, we’re trying to help people change the way they see vision for those individuals in charge of policy. For too long vision has kind of been seen as an add on issue. So you’ve got primary health care, and then we’ll consider vision and hearing and dental. Whereas issues such as vision and hearing are really the key connection that individuals have to the world to be able to function within it’s a sensory issue. So having those sensory inputs, whether that’s how somebody hears or how somebody sees or their nutrition, through their taste and smell really helps to define how well somebody functions within their world. So if we’re taking care of some of these Keystone issues, whether it’s hearing or vision or, or the other sensory inputs, then we’re we’re basically gave ourselves a stronger foundation for dealing with issues of health, living independently and being able to be socially connected. These are all things that are seen as healthy aging. But if we’re not taking care of the keystone issues of how people are able to function in their world, then we’re basically hampering ourselves right off the bat.

20:00

Product Spotlight: sponsored by Vispero. A feature of MyMacDLife is where you can learn more about the Assistive Technology devices that are out there to help you do the things you love. And live your best low vision life. Go to MyMacDLife.org. MyMacDLife.org. Click on Product Spotlight. Thank you.

20:21

I know that The SupportSight Foundation is very much involved with research. And I think there is an aspect of what you do that dovetails with that? Or maybe maybe you’re doing some things parallel to what SupportSight does or perhaps support what they’re doing. Can you talk a little bit about that? Because I think people really are interested in what’s out there. What are we learning? What might help either address the issues that people now have with low vision, or perhaps down the road might address those things? Could you speak a little bit about the research? 

21:10

Yeah, the research that we provide is really the public health research. And then also, we encourage individuals themselves to be engaged in research. So I’ll kind of talk about those two different branches. As an organization, we’re really interested in making sure that we have strong national surveillance of vision, but also that we have research at the community level, understanding how interventions reached target populations, or don’t reach them well. So that’s part of the work that we do seeking appropriations for the Centers for Disease Control and Prevention. They’re charged with our national surveillance. 

21:47

So we typically partner with them to help provide funding for vision and national surveys, and making sure that that data is then used in national systems understand where vision problems are occurring, what populations are at risk, who can and cannot access, eyecare. It’s critical that we have the data that kind of feed this so that we know where we can put our small amount of dollars or small resources that we do have for interventions in at the right location that had the biggest impact. So otherwise, if we don’t have this data to kind of target where we need to put our resources than we sort of do a shoot in the dark, and hope that it gets to the right person, we need to be smarter with that. Because we don’t have a lot of money to support vision and eye care at this point in time.  So surveillance is really critical. 

22:38

And it also, as I mentioned, have been proving proven approaches for community level interventions. So how are we getting early detection practices, education, connections to care done at the community level to make sure that the people that need that are actually doing so successfully? So those are two important ways beyond that the critical research that happens at the National Eye Institute and through foundations that provide research funding for that sort of clinical bench to science. We need to make sure that once we have the interventions, they’re getting to the right people in the right way at the right time. So we sort of cover that latter half of the research spectrum where we find out okay, what are we doing? How’s it getting to people who needs it, so that we can have a complete research system and that’s really critical. We can’t just create new products, and then not get it to the people that need it.

The other aspects that I mentioned–and I guess I just did a pun– is our program called Aspect. 

23:43

Good for you.

23:44

 Yeah. I love vision puns. Everybody loves them, please. 

23:47

So, our program Aspect is a patient engagement program, which provides training for cohorts of individuals, we usually have about 25 to 30 people in a cohort. And they go through a 8 to 10 session training program to understand how they can shape their story with vision loss or being a caregiver or clinician and vision loss, to help shape that story to use it in a positive way. With different kinds of stakeholders. We help them understand how they’re saying an individual with vision loss due to age related macular degeneration, can share their story with stakeholders to direct the way a clinical trial is designed or the way that care is provided to individuals who have vision loss to make your experience in a clinic better or how individuals can take part with the legislature and meet with legislators to shape policy at the state level or the federal level. 

It’s the story of the individual and what you know impacts of policy or practice has on them that will really speak loudest in the room to drive change. 

Up until the last few years, I don’t know that we’ve done a good enough job either as prevent blindness or other organizations in capturing those stories. And I hope that members of your audience are hearing this. It’s those stories that have the greatest strength. So, we really wanted to through the Aspect program, provide a training program to help people become comfortable with sharing their stories, and then providing them with the platforms to do so. 

25:25

Once people graduate from this program, they’re connected to pharma companies, or to, you know, congressional briefings or webinars where they can share their story. And also, through the process, find the community. Each cohort creates its own community of individuals that support each other, grow together and collaborate on new projects and practices. So, since the program started in 2020, during the pandemic, we have graduated 75 individuals through the program, and have another 40 poise to complete the program in September. So, it’s growing very quickly, and has been a really meaningful experience for everybody involved.

26:08

I give to The SupportSight Foundation because I just found out that my mom has vaccine, 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.

26:28

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. Thank you for your money.

26:47

That’s terrific. I have to say I love the way that your organization Prevent Blindness is getting involved at the grassroots level at the community level. And I like very much and appreciate I’m sure our listeners do as well, your emphasis on trying to connect different organizations to one another. And I really appreciate. And I think listeners certainly need to hear this, how important it is for them to get out in front of their legislators, to let them know about these different initiatives.

27:26

It’s really critical for individuals to share their experiences. 

One thing that helped me as I was beginning to meet with legislators, whether it was at the state house or at the federal level, is just to remember these are individuals that you help to select through your vote that you pay for with your taxes, and that you should have an interest in talking to you about what matters to you. And your vision matters to you. So there is no more important story than to take to somebody that works at a state department or a state legislator or a federal legislator, your senator or your representative to say, “You know what, my vision is important to me, here’s what I’ve experienced. And I want to see some changes happen.” 

It’s always nerve wracking the first time that you go and share your story, but let me tell you, it gets really easy once you start talking about what’s happening to you. And again, that is what legislators policymakers want to hear. They want to know they want into this business because they want to help improve lives in one way or another. So they need to hear from those individuals about what can help them what can improve lives. And whether it’s having access to eye examinations, eyeglasses, low vision devices, treatments and therapies. 

They want to hear from you because it’s those stories that stick in their brains not so much statistics and, and graphs and charts. But your story does stick and we really appreciate the opportunity to help you bring that story to life.

28:56

Boy, that’s so true. I’m just envisioning visualizing here, Akira. Now he’s a celebrity. But even if he weren’t, Michael Fox can get up and talk about Parkinson’s. And all of a sudden, it’s like you’ve got everybody paying attention to it. Now you don’t have to be Michael Fox, you can be somebody else who has a story to tell about a challenge that you or your loved one has faced with low vision. And that will have a significant impact as well. 

The other thing I wanted to add to what you said was I think it’s really great the way you kind of talked about the bifurcation of the research. So you have The SupportSight Foundation is doing research in in the clinical way, perhaps, whereas you’re doing other kinds of research to better understand get the data and the handle on what’s happening out there in the real world. So it’s more of a practical based application of the research. Is that correct?

29:54

That’s correct. Yeah. It’s I think it’s really important for people to understand that when we talk about vision research or any research at all that it needs to go beyond just finding a new molecule, finding a new pill, finding a new injection. But we need to research to make sure that we understand how we’re delivering those things, how they’re getting to patients, the kinds of populations that are benefiting or not benefiting, that we’re researching all that as equally as hard. Because we know that once we have a fabulous new treatment, the faster that we can get it to the people that need it, the better we all are going to be. 

We really do need to have just as an aggressive approach to making sure that we have public health research, which is what that is, making sure that we have as an aggressive approach to that public health research, as we do to finding new therapies because we need to make sure that we have a balanced approach. 

And you know, we can do better on the funding side of things we have about $830 Million plus at the NEI to find solutions, therapies, new genes and, and new ways to develop molecules to address a wide variety of vision problems we need that the amount of trials that you have to go through to find the one thing that works is incredible. But we only have about 1.5 million dedicated right now to population health surveillance and community level interventions at the CDC. So, there’s a big disparity there. And that’s what prevent blindness focuses on for its appropriations request to see that increase because we know that we do need to get it to the right people in the right way at the right time. Absolutely.

31:41

Thank you for listening to part one of this two part episode. Subscribe to MyMacDLife wherever you enjoy your podcasts so you can hear part two.

31:57

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.

32:41

MyMacDLife podcast is generously supported by Regeneron.