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Advocating For Eye Health: What You Can Do

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Sara Brown and Dan Roberts

The guest speakers are Sara Brown and Dan Roberts from Prevent Blindness who discuss eye health advocacy.

  • BrightFocus Foundation
    Advocating for Eye Health: What You Can Do
    April 25, 2018
    Transcript of Teleconference with Sara Brown and Dan Roberts from Prevent Blindness, based in Chicago, IL
    1:00–2:00 pm EDT

    The information provided in this transcription is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should be taken only under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.
    Please note: This Chat has been edited for clarity and brevity.

    MICHAEL BUCKLEY: Hello, I’m Michael Buckley with BrightFocus Foundation. Welcome to today’s BrightFocus Chat, “Advocating for Eye Health: What You Can Do.” If this is your first time on a BrightFocus Chat, welcome, and thanks for joining us. I’ll just give you a brief overview of what we’ll do today.

    BrightFocus Foundation supports some of the top scientists in the world—those trying to find cures for macular degeneration, glaucoma, and Alzheimer’s. We share the latest news from these scientists with families impacted by these diseases. We have a number of free publications and plenty of materials on our website,, that offer tips for living with macular degeneration. BrightFocus Chats are another way of sharing information with families across the country.

    Without further ado, let me tell you a little bit about today’s Chat, “Advocating for Eye Health: What You Can Do.” We’ve been fortunate over the last few years to hear from a number of physicians, researchers, social workers, and others talking about living with vision diseases (such as macular degeneration). Today we’re going to go in a new direction. That’s learning a little bit about advocacy, and that’s a big, broad word that could mean as much as visiting with an elected official to explain some of your concerns, all the way down. Advocacy could be defined as being able to better speak up for your needs and concerns with family members or people in your neighborhood or community. So, it will be a new direction for us today and I’m looking forward to it.

    We’re really fortunate to be joined by a group that BrightFocus works quite a bit with, called Prevent Blindness, which is based in Chicago. They have chapters throughout the country, and I’ve come to know and respect them quite a bit over the past few years for their knowledge of public health issues related to vision disease and for the clarity, passion, and effectiveness that they bring to their work in communities, state capitals, and Washington, D.C.

    We have two guests today with Prevent Blindness. The first is Sara Brown, who’s the Director of Government Affairs for Prevent Blindness, and the second is Dan Roberts, who wears a number of hats in the macular degeneration world. Dan is the Founding Director of Macular Degeneration Support. He’s the Editor-In-Chief for the publications at Prevent Blindness, and he’s the author of The First Year . So, we’re very fortunate to have these representatives from Prevent Blindness. Sara, I’d like to start with you. First of all, thank you for joining BrightFocus today.

    SARA BROWN: Of course. Thank you for having me, Michael. I appreciate it.

    MICHAEL BUCKLEY: You and I have had the chance to work together over the years, and I’m wondering if you could just tell the audience a little bit about what you do as Director of Government Affairs for Prevent Blindness.

    SARA BROWN: Certainly. Like Michael said, I’m the current Director of Government Affairs for Prevent Blindness, which really just means that I represent Prevent Blindness’ public policy goals and agenda to members of Congress and the Administration. So, my day-to-day means that I’m spending a lot of my time on Capitol Hill meeting with congressmen, senators, and their staff to inform them of the need for investments in vision and eye health at the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the Health Resources and Services Administration (HRSA). I also help develop advocacy materials to help patients understand how to represent vision and eye health concerns to government officials and understand the emerging public policies that could impact how they access vision and eye health.

    To kind of take a step back on how I message that to members of Congress and their staff, Prevent Blindness itself is a nonprofit organization that advocates public health or a public health approach to vision and eye health. What that means is that the work that we do helps promote and support access to vision and eye care for people of all ages. So, we don’t really focus our efforts on treatment or access to care on any one specific condition or eye disease, nor do we concentrate on expanding access to care for a specific age group. Rather, the work that we do enhances the current system of care and supports the work that is being done, whether that’s groundbreaking research at NIH or ensuring that preventive measures are being promoted by the CDC and that those measures are reaching the populations that they’re intended for.

    MICHAEL BUCKLEY: Thank you. How did you become interested in doing advocacy on vision issues?

    SARA BROWN:  In fact, I didn’t necessarily think about my vision until I came onboard with Prevent Blindness. But my career interests broadly have always been in government affairs and lobbying, and I see that really as an opportunity to promote issues that may not get a lot of attention here in D.C.

    With respect to vision and eye health, I personally remember my own experiences getting glasses at age 14 and seeing how clear the leaves on the trees are, but it wasn’t until I came onboard with Prevent Blindness that I found out my grandmother lives with AMD, which means that both my mother and, eventually, I will be at risk for developing that, too.

    However, as I’ve become much more familiar with eye health and through the many conversations I’ve had with health staffers and with my friends and my family, I continue to hear stories about other people’s experiences with vision and eye health. And I realize that it’s something that no one really thinks to prioritize until suddenly you can’t see very well at night or you blink a thousand times and that dark spot in the corner of your eye doesn’t really seem to go away.

    So, as I continue my work in this space, I’d really love to be part of the changing conversation that is happening on vision and eye health and ensure that vision is elevated as a natural part of living healthfully and independently.

    MICHAEL BUCKLEY: That’s great. I have a few questions for you related to that conversation. What do you think are some of the issues in Washington at the national level—what are some of the key public health issues related to vision?

    SARA BROWN: Like I alluded to earlier, Prevent Blindness is fully engaged with ensuring that Congress continues to make investments at the CDC, NIH, and HRSA; that will ensure that vision is integrated into population and public health strategies.

    We’ve also expressed our concerns with lawmakers and the Administration on keeping the Affordable Care Act essential health benefits, patient protection, as a part of any efforts to reform health care—specifically because eliminating these benefits from health insurance plans could mean that patients with chronic illnesses (like diabetes, heart disease, or stroke) may not have access to services and treatments that could protect their vision.

    In addition, we work collaboratively with many other patient organizations to ensure that policies surrounding Medicaid and Medicare protect patients from higher prices on drugs and treatments or high out-of-pocket costs for care.

    MICHAEL BUCKLEY: And what’s the distinction between what Washington can do or should do on vision issues versus what’s done at the state level? I think that’s something that a lot of people who aren’t in positions like yours may not understand. What’s a state issue and what’s a federal issue, in terms of vision health?

    SARA BROWN: I think the best way to differentiate the two issues is to look at where the funding is coming from and what’s actually happening on the ground in a state or a local community. I think more and more these days these two areas of policy are overlapping. So it can be a little difficult to differentiate how you can be vocal on something related to vision and eye health when it’s looking like it’s happening at the community level but the funding is coming from D.C.
    To cite a specific example with public health, I work advocating to Congress for strong investments at the CDC. That means that most of the funding that goes to CDC will eventually be sent to state and local governments for their own use in implementing programs at the community level; such programs include encouraging communities not to smoke anymore or ensuring that there’s access to nutritious foods that could help stem diabetes and other chronic illnesses.

    The misconception—at least that I’ve discovered in my work in advocating for CDC funding—is that all the funding that goes to the CDC from the federal budget stays at the CDC. But the truth is that many programs are initiatives that you see happening at home in your state or community or as a result of funding from the CDC, which is what makes our advocacy on this particular issue so very important.

    MICHAEL BUCKLEY: I appreciate that you’ve shown that it isn’t so black and white, maybe, as it used to be. I’m interested in the type of meetings you have in D.C. When you go to Capitol Hill and you meet with elected officials or the staff, what’s their reaction when you walk in and start talking about vision as a public health issue, and how do lawmakers react to your being there?

    SARA BROWN: Some of the reaction that I get here in D.C. is, “Why are we not doing more on vision and eye health?” Usually when I speak to members of Congress and their staff, there’s agreement that it makes a lot of sense to invest in vision because we have a population who is aging and very likely to see impact on their vision health as they age. But even simple refractive errors make it difficult for working adults to do their jobs or to engage with the world around them and continue to be independent.

    Vision really is what enables us to be productive and fully engaged, but the realization that I’ve discovered in speaking with members of Congress and their staff in communicating those issues is that it is constantly overlooked in the health care conversation, which means that it has become and it’ll continue to become very expensive to our country in terms of direct medical costs, caregiving, and lost productivity.

    Members do realize that there is value in investing in these sorts of programs, especially when you make it known to them that vision/eye health problems are currently costing our country $145 billion per year. However, without intervention or support from Congress, these costs are projected to increase to $717 billion by 2050. I mentioned to the congressional staffers who are somewhere in their 20s that it’s about the time that they’ll be looking at retirement themselves, and vision could be a big issue to them down the road.
    The problem with being an advocate on this issue and many others is that we are essentially competing for the same slice of pie with other very serious health issues. But the point that I make with congressional staff that seems to resonate very well is that with small investments, we can get ahead of a very real and serious problem and hopefully eliminate vision loss as an additional and unnecessary burden.

    MICHAEL BUCKLEY: I think you’re right. I think particularly as the baby boomer generation is retiring, a lot of these issues come to the forefront. I think it’s an interesting question you asked me: Why doesn’t our country take vision more seriously? And in your own personal opinion and experience, do you think it’s because the financial resources are so tight, or do you think that these issues don’t have the public awareness that they need? How would you answer the question you posed a few minutes ago about why you don’t think we take these seriously enough?

    SARA BROWN: I think that there’s a number of different reasons why we haven’t taken vision seriously, but I think—and not to overgeneralize the problem, I definitely have this myself in being a vision and eye health consumer—if you don’t really think about it until it’s a problem, you don’t think about the implications of losing your vision and just what that actually means. Prevent Blindness itself, we’ve been around for well over a century. I think several decades ago refinements in vision impairments were much more prevalent, and we’ve enjoyed several decades of emerging technologies that help prevent vision loss, at least in terms of disease and anything that’s largely preventable.

    But I think that if you look at health care in general, there’s many other chronic diseases that have somehow emerged, and Congress has responded to those in sort of a piecemeal approach, so vision health has, as well. There are still multiple challenges to ensuring that avoidable vision loss continues to be addressed. But there’s a lot of diseases that have emerged that have taken a lot more precedence, and Congress has continued to appropriate funding to address those diseases as the decades have gone on with appropriations bills and such. I think vision has largely been left out of that, as diseases that lead to vision loss have been eradicated or eliminated over the years.

    MICHAEL BUCKLEY: I agree. And I think you’re right there when you talk about the cost of independence and the difficulty living independently as people grow older. Pretty soon we’ll turn to Dan Roberts to talk about a lot of his experiences. But I just want to say, Sara, I really appreciate your point about trying not to pit one disease against the other.  I like what you said about using the positive examples of diseases that we have made progress on in this country when we make a full effort in the public and private sectors. So, I think you’re right; it’s good to understand that the pie is limited and to talk about the serious consequences of these diseases. So before we turn to Dan, I had one last question. If somebody wanted to become active in their community on vision issues, how do you suggest they get started?

    SARA BROWN: Well, I think first of all I’d like to say it’s a great time for people to become vision advocates. I think we’re starting to see a higher demand from patients for better vision coverage, including the low vision rehabilitation services and access to emerging treatments. I think the best way to do this is to start by sharing your story. I spent about 6 years on Capitol Hill with the Senate, and I left about 5 years ago, and even to this day the constituent meetings that I can remember the most are the ones that related personal experience to an action that I can take or advise my boss to take on their behalf.

    So, if you don’t know what to ask for, reach out to organizations like BrightFocus or Prevent Blindness—organizations that are fully in tune on a daily basis to the issues that affect vision and eye health—and see what we’re working on. See if they’re hosting any advocacy actions like a campaign that you can lend your name to or hosting an advocacy event here in D.C. or even at your local congressional office. As always, picking up the phone and calling the office in D.C. works just as much as emailing them. I know for a fact that staff are required to respond to constituent inquiries; and you can also replicate these actions at the state or local levels, too.

    But finding out what vision and eye health organizations exist in your own hometown and in your state and reaching out to your state and legislative officials or state council is definitely the best way to go. It may take a lot of time and endurance, but partnership is in numbers, and the more you ask, the more that you’ll keep your attention and keep vision a part of the conversation.

    MICHAEL BUCKLEY: That’s great. I really think that’s one of the ways to describe it. It sounds very positive—a way that people can become more involved in these issues—and I think it’s understanding that advocacy doesn’t mean, you know, the people in Washington with the fancy suits and the expensive shoes. This truly is people all across the country just telling their stories, and I think that sets up well to take a few minutes to hear from Dan Roberts who, as you mentioned earlier, is an advocate of macular degeneration issues. And so, Dan, thank you for joining us today. I was wondering, could you tell us about why you are an advocate for vision health?

    DAN ROBERTS: First of all, thank you for inviting me to speak; that’s part of advocacy, you know, is to get invitations to speak, so I appreciate the opportunity, Michael. I started out as a patient in need of information, so I joined a thing called MD List, which was an email discussion group on the very new internet—it was 1994—and then because I used to be a teacher and retired early, I became a teacher again of the people in that list, which started out with 12 people and now has grown to…well, we’ve had over 1,400 subscribe to it since that time. So we all learn Sara from each other, and they kind of voted me as the person who was supposed to take charge. That led to the creation of the Macular Degeneration Support organization, our website and a telephone support group, and our international low-vision support group, so it grew simply out of need.

    I was taught that teachers are also good listeners, and by following that rule, I learned what our low-vision community needed was—and therefore my mission expanded into—advocacy. It was kind of a natural progression. I’ve always said you should go through every door that opens for you; don’t just stand around in the hallway. And so, I had to live up to my own preaching there. Of course, you want to leave that door open in case you made a mistake and want to get back out. That means taking part in funding requests on Capitol Hill; I’ve done that with . I’ve addressed hearings on different issues with the CDC and Medicare. I’ve gotten involved with those. I was a consultant with low-vision device manufacturers and pharmaceutical companies, and, of course, I’ve done a lot of writing and presenting. When I speak or when I write, I’m writing for thousands of people who don’t have a voice of their own.  I try to find that door and go through it, and I’m taking several thousand people through that with me. So, that’s my view of advocacy in my position.

    MICHAEL BUCKLEY: That’s great. What a great inspiring answer. I’ve got a few questions that have come in today about that daily life in your community, going out to stores and restaurants, and in your opinion and your experience, what can the community sector—stores, restaurants, you know, places—do to best help those with diseases such as AMD?

    DAN ROBERTS: There are opportunities in the community to speak. Many, many support groups are always looking for programs, and even the patients themselves are good speakers because they’ve been there and done that. So, speaking engagements are opportunities to advocate. Other opportunities are helping to start and run support groups. Others are to help with fundraising in the community—bowl-a-thons, that kind of thing—that other organizations sponsor to raise funds; volunteer to help, that’s how my organization operates, totally on a volunteer basis; or be an internet scout. If you know the internet, if you’re familiar with it and know how to get around, you can be the scout for all of those who are still unconnected or unfamiliar with the internet, so you could visit libraries just as a counselor, let’s say. I’m an unofficial counselor to help people use the internet and find the information they need.

    You do need to be an informed consumer, but you need to be skeptical, you need to speak up about misleading or false claims made by organizations and commercial enterprises. You need to speak out in favor of good efforts. Compliment those who are doing a good job, including your doctors and people even at the store who understand your situation and offer their help; we need to encourage that kind of thing in the community. We need to donate generously but cautiously; check out organizations with GuideStar, CharityWatch, and Charity Navigator.

    And finally, be a model patient. Show others how to live with—and live well with—low vision by displaying tenacity, adaptability, support, and knowledge. That’s what I call the task of vision.

    MICHAEL BUCKLEY: That is fantastic, Dan, and it’s all wonderful advice. For instance, in the BrightFocus Chats we may have families that are new to vision diseases and, I think it’s safe to say, probably a little overwhelmed about what to do. Do you have any sort of big picture advice about how to navigate the world of Medicare and Medicaid and private insurance? It’s a pretty daunting process, but how should people begin figuring those situations out?

    DAN ROBERTS: I have found all of those organizations to be very helpful to the consumers. You may have to wait a little bit to get the phone answered, but when you’re there and if you ask the right questions—which means you need to be educated yourself in the choices. So, the first thing is to learn about what you’re asking about. I know that sounds a little strange, but you have to know what questions to ask. And once you do and you ask them correctly and politely, you’re going to get all the information you need from the support personnel at all of those organizations. Show them that you know what you’re talking about and that you’re not going to hang up until they give you the answer.

    MICHAEL BUCKLEY: That’s great. And on that theme of educating yourself, how, in your experience—what’s the best way to ask family, friends, and neighbors for help? I mean, it’s not something that comes naturally for a lot of us. What has your experience been on how to ask for help?

    DAN ROBERTS: The biggest problem we have with family and friends—and I’m speaking from personal experience—is that they need to allow us to captain our own ship. We still know the ship better than they do. However, we also need to educate them with empathy. We have to understand that they don’t understand and tell them what our needs are. We need to teach them how to live well with vision loss because they may be genetically prone to it; they need to learn that. That’s one of the most important things I tell what I’ll call “my people.” They’re actually the clients that call me and say, “How can I explain this to my family?”

    Give them the resources that are out there. We have lots of resources in Prevent Blindness—it will help them to understand. And be honest, and don’t be afraid to ask for help. Tom Sullivan, who’s a good friend of mine and well-known in the field of low vision for many years, says, “Let them love you,” and I like that. Think of them as people who want to be given a gift, and give them the gift to help you, because there’s no better feeling in the world than to be able to help somebody that needs it. Just give a dollar to the next needy person that you find and see how good that makes you feel, and then you’ll know how good people can feel if you’ll just let them in on it.

    MICHAEL BUCKLEY: Right, that’s great advice. How would someone find a vision support group in their community?

    DAN ROBERTS: You could go to the MD Support site or Prevent Blindness. VisionAware is a good resource. Those are probably the three top resources I would say to visit to find support groups. They’re all listed there geographically. I also run an international MD—or a low-vision support group that has 180 groups around the world. You can find a group by looking at that list. It’s easy. If you just type in the words—let’s say you could put in “vision support” as a key word; you’re going to find many opportunities.

    MICHAEL BUCKLEY: I appreciate that. I have a couple of questions that have come in recently. Have you had experience at a restaurant where they might have a menu that’s in a larger print?  Is that something you’ve ever come across, where maybe a restaurant might be able to offer a little assistance in that manner?

    DAN ROBERTS: Well, I wish they would. I actually went to the trouble to take—in my favorite little café here in my town, they had a very small-print menu, and so I took it home and spent hours turning it into a large-print menu and took it back, thinking that they would really appreciate this, and I never saw it again. It’s really difficult to get places to make those changes, so we have to meet the world halfway. We can’t expect them to raise the lights, turn down the sound, raise the font in the menu. We can’t expect them to go 100 percent, so it’s up to us to advocate for ourselves and say, “Do you have a larger menu?” and if they don’t, well, pull out your lighted magnifier or your optical character recognition machine—whatever device you happen to have at the moment—and take care of yourself on it. But don’t forget to mention to them that they need to help, too.

    MICHAEL BUCKLEY: Right. And I’ll say the expression, “People vote with their feet,” and if there’s a restaurant down the street that has one, I think they may see some benefit.

    It’s interesting how you talk about the menu situation. I think it pairs up very well with the points that Sara made earlier about how you have to tell your story. And people may or may not do the right thing from there, but step one is to speak up. Kind of related to that, we often get questions here at BrightFocus about how you can make the most out of your eye doctor appointment. I was wondering, in your experience, what makes that go as well as it can?

    DAN ROBERTS: What works for me is that I know what questions to ask when I walk in. I’ve already got it written down, or at least in my head. I show the doctor that I know what I’m talking about, that I have read the resources, and then I ask the questions that can be answered. There are some questions that can’t be answered, and an educated patient knows that and won’t bother the doctor with questions like, “How much time do I have?” You know, that’s a question a doctor will never answer for you.

    You’ve got to do your own research, and that’s not difficult because organizations like BrightFocus, for example, put out a lot of information about these diseases. All they have to do is to put forth a little effort. I know I sound more like a doctor advocate here when I’m talking about that, but patients need to go into the office with a professional attitude, and they’ll be met with a professional attitude.

    MICHAEL BUCKLEY: That’s very well said. Staying on the health care question for a minute—this could go to either Sara or you, Dan. When people are talking to their elected officials, are there things that you wish Medicare or Medicaid covered but don’t? So, if an elected official ever asked the question or you wanted to bring it up, “If you could change one thing about Medicare or Medicaid, what would it be?”

    DAN ROBERTS: I’ve been to Washington four times with Prevent Blindness, and the one issue that I bring up every time is that they need to make that one little change in reimbursement for magnification devices. They made a mistake when they first introduced the legislation that it would not cover lenses—they were talking about eyeglasses. Well, now we don’t just have eyeglasses with lenses anymore, we have lots of devices, but they’re not covered because of that one phrase in that legislation. So, every year I go back and I say the same thing over and over, and of course I get the question, “Well how are we going to pay for it?” One time I said, “If nothing else, at least hold a bake sale on the White House lawn,” you know?

    DAN ROBERTS: Yeah, Sara, do you want to add something? If you could expand Medicare or Medicaid in some fashion, how would you do it?

    SARA BROWN: Well, after what Dan said, I know Prevent Blindness takes this approach as well. I think vision has largely been left out of Medicare to a confusing degree. You know, I think it’s kind of strange that Medicare would be much more willing to pay for very costly hip or joint replacements if somebody happens to fall as a result of a vision impairment—not to over-simplify that problem—than they would to take a much more cost-effective approach in covering vision benefits.
    We’ve actually been engaged with several members on the Hill to talk about the best approach, and Dan is right. It’s always the question of, “How are we going to pay for this?” There are several bills that are pending in front of this Congress that take several different approaches on how to integrate vision—and not just vision, but dental and hearing benefits, as well.

    For some reason, everything that’s kind of above the neck in terms of sensory health issues has largely been left out of Medicare. I would love to see that integrated back in. And the conversations that we have with members of Congress, again, on how to pay for this and what’s the right approach to it to make sure that the reimbursement structure is there, that the most essential benefits are covered, and how to do so—I think is definitely going to be an ongoing conversation as we move forward on that.

    MICHAEL BUCKLEY: Interesting.

    DAN ROBERTS: I was going to say, Congress doesn’t get a lot of compliments these days but I wanted to shout out to them on the recent—what they call the omnibus legislation, where they have increased the amounts of money considerably for the Vision Health Initiative; the Glaucoma Project; and the National Academies of Sciences, Engineering, and Medicine, who they have identified as having a vital role in addressing the challenges that we face. So, I wanted to give them a compliment; they might need that about now. We greatly appreciate it.

    MICHAEL BUCKLEY: So, there’s time for a couple more questions kind of related to Medicare and Medicaid. Is there something about private insurance that you’d like to have cover these diseases better, or is there a common misperception where people think service “X” is covered when it really isn’t? How would you broadly comment on private insurance?

    DAN ROBERTS: Sara probably could answer that better than I.

    SARA BROWN: I’m actually trying to think of the best way to approach that. I think, like I said earlier, integrating vision as a piece of holistic health in terms of chronic diseases and caregiving and coverage of low-vision rehabilitation services and devices…I think that’s the approach that I would love to see private insurance take. And I hope that they do take that, considering, you know, the trends that we have with our population and, again, the demand for the coverage of these services from the consumers.

    MICHAEL BUCKLEY: I think you’re right. I mean, I think that if one were being rational they could see that it’s more cost effective to address an issue before it becomes a problem. Like you said, if somebody falls and breaks their hip because of vision, it seems like a very expensive time for the federal government to get involved. I just had a question about that—how do we pay for it? If advocates across the country talked to their elected officials and explained what they need and they get that question, “Well, how are we going to pay for it?” I mean, my own opinion is that’s Washington’s job to figure out the priorities. I see that as kind of an intimidating question for advocates. How do you suggest they address that question?

    DAN ROBERTS: You mean other than having a bake sale?

    MICHAEL BUCKLEY: Exactly. I think that might have to be a little expensive.

    SARA BROWN: I mean, I would hope that a congressional staffer wouldn’t ask if vision—you know, somebody who lives with low vision or a vision disease—on how they’re going to pay for their care. I wouldn’t be too worried. I mean, that’s a question that I would expect to get because I’m a professional, and this is my job. The answer to that is, it’s looking at the prevention side of things. A lot of diseases that affect vision, if it’s caught as early as possible, there are treatments that are out there. There are therapies that are available that can help slow the progression of many things that could cause vision impairment. I mean, Congress doesn’t necessarily like prevention, but this is who we are. This is the approach that we take. This is the approach that we want patients to feel empowered to take.

    I think that in terms of how to pay for it, if Congress would consider making small investments, there’s a lot of cost that can be saved down the road if they would be willing to make those investments.


    DAN ROBERTS: Patients also need to be made aware of the patient-assistance programs by pharmaceutical companies and others and also some organizations who have a little money that they can help them with their insurance until this problem is settled.

    MICHAEL BUCKLEY: I agree. We are nearing the end of our time together and I just want to throw a follow-on question out to Dan and Sara, if you want to weigh in as well. The big picture—are you feeling hopeful or optimistic about life for people who have vision disease, whether that’s in the research realm or in public support or community support? I mean, just based off of your experiences, where do you see things going in the future?

    DAN ROBERTS: We’ve had a disappointing year this past year with some research that has not made it through the trials, but there is still other research that is doing very well. I tend to be a Pollyanna, and I’d like to think that there’s a lot of good work going on that’s going to come through. It’s going exponentially faster every year, and so I have high hopes for treatments and cures coming up in the near future.

    MICHAEL BUCKLEY: Well, great. And Sara, what’s the view from Washington on this?

    SARA BROWN: I’ve been here in D.C. for 10 years, I’m a perpetual Pollyanna, and you kind of have to be to do the work here and be able to manage it. But yes, I’m feeling very optimistic about vision and eye health. Like Dan brought up with the Fiscal Year ’18 omnibus bill, the two programs that Prevent Blindness is keenly interested in at CDC received increases—but big ones. And, like I said, we’ve been on the Hill almost every single day so far this spring to continue to ask for those increases to be a part of the next year’s fiscal appropriations bill.

    And the messaging that we’re getting—and you might have to change your messaging once or twice to have this conversation—but the resonance that we’re getting from Congress is very good, that this is a great time to make investments in vision and eye health and to make sure that some of the most serious vision impairments and eye diseases out there can be prevented with just a little bit of investment.

    MICHAEL BUCKLEY: I appreciate anybody who’s been doing this work for a decade in Washington and is optimistic. I think we need more of you.

    SARA BROWN: It comes with age.

    MICHAEL BUCKLEY: Sara and Dan, I just really appreciate you taking the time to be with us today, and again, thanks so much for all that you do.

    DAN ROBERTS: Thank you, Michael.

    SARA BROWN: Thank you.

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