2023 Lighthouse Guild Awards Lecture

Watch this year’s Lighthouse Guild Awards Lectures which feature the Bressler Prize awardee, Dr. Wiley A. Chambers, who talks about the process of approving new ophthalmic drugs. The Pisart Award recipient,  Mr. Saqib Shaikh, discusses how the power of technology can empower people with vision loss through the Seeing AI project. Additionally, the Morse Lecture recipient, Congresswoman Carolyn Maloney, elaborates on the importance of advocacy for people with disabilities.

Lecture Transcription

Roberts:

All right. Good afternoon, and welcome to the 2023 Lighthouse Guild Awards lectures. We’re delighted to have those of you here in our technology center: a hub for developers, vision scientists, academics and physicians, and those of you who are joining us virtually. Lighthouse Guild acknowledges and celebrates outstanding achievements in vision research, technological innovation and dedicated advocacy through a series of prestigious annual awards. These awards and associated lectures are tributes to those who have excelled in translating research into practical treatment and rehabilitation, pioneering technological advancements and fervently championing the rights and wellbeings of individuals with vision impairments.

The remarkable accomplishments of our award recipients play a pivotal role in advancing Lighthouse Guild’s mission of providing exceptional services that inspire people who are visually impaired to attain their goals. Today, we have the opportunity to hear from three remarkable pioneers in their respective fields as they share their work that is positively impacting the lives of individuals who are blind or visually impaired.

Since 2003, the Bressler Prize annually recognizes an individual whose research has translated medical or scientific knowledge into significant advancements in treating or rehabilitating people with vision loss. Today’s recipient is no exception. A couple of years ago I was asked to give a lecture on career options for ophthalmologists. I spoke about careers in the pharmaceutical and surgical device industry, finance, government, and health administration, in addition to traditional patient care.

For the government section, I interviewed today’s Bressler Prize winner, Dr. Wiley Chambers.

He said something to me that resonated.

He said, “when you’re a doctor in practice, you have a huge influence on your patients’ lives, but it’s only a limited few you reach. When you work in government, making healthcare policy, you have a much smaller influence on individual patients, but it’s over a vast number of patients. One role is not better or worse than the other. In fact, we need both types of doctors.”

Over the past 36 years, I would argue that Dr. Wiley Chambers has had the greatest influence on the way that ophthalmology is practiced than any physician in the world.

By setting the FDA guidelines for drug approval for every ophthalmic disease state, Dr. Chambers, first and foremost protected the health of the American people. While fostering innovation within the pharmaceutical industry. From the medical therapy of dry eyes to the intravitreal injection of medicines to the treatment of macular degeneration, the superior safety and efficacy of these therapies were mandated by Dr. Chambers and his associates at the FDA. These standards became global standards and patients throughout the world have benefited from the rigorous precision with which medicines for vision loss are developed.

In addition to being a great doctor, Dr. Chambers also brought his wife Jane here to New York for her birthday yesterday, and is also a great father and a great friend to many. It is my pleasure to introduce the recipient of the 2023 Bressler Prize in Vision Science, Dr. Wiley Chambers.

Chambers:

I’d like to start by thanking Dr. Roberts for the kind introduction, and the Lighthouse Guild for this great honor.

Well, I was born in the Washington, DC area and I live there now. I grew up in the New York metro area and it’s always nice to come back to an area that I still consider the city.

Going to start by telling you a little bit about the history of the Food, Drug, and Cosmetic Act. It’s the principal law that the Food and Drug Administration, more often called the FDA, enforces. I will then go into what the FDA does and doesn’t do. Finally, I’ll compare the ophthalmology drugs that were approved before I started with the FDA compared to where we are.

First, my standard disclaimer.

This presentation reflects my views and not necessarily those of the Food and Drug Administration, and I am prohibited by law from having any financial interests or conflicts with any company that I mention or any of their competitors.

Food, Drug, and Cosmetic Act is a law that was passed by Congress and signed by President Roosevelt in 1938. While I was not around at the time, told it was passed in response to several products, most notably Elixir Sulfanilamide. Elixir Sulfanilamide was a powder, but it was dissolved in diethylene in glycol, which is a toxin and over 100 individuals, including a number of children, died. Lash Lure, an ophthalmology product, a cosmetic product, was made to beautify eyelashes. However, it ended up blinding people.

With the passage of the Food, Drug, and Cosmetic Act, the FDA became the gatekeeper of marketed drugs. Companies wishing to market a product had to submit to the FDA safety information that they intended to market this particular product. And the FDA had 90 days to object. If they did not object the product could then be marketed.

I do not have any pictures of Elixir Sulfanilamide. But, I do have pictures of the advertising that went along with Lash Lure until it caused its effects and it then ended up being a poster child for warnings.

Over the years, the Food, Drug and Cosmetic Act has been amended many times. In 1951, the distinction was made between over the counter products and prescription products. You may have noticed that I only mentioned safety. Prior to 1962, these products didn’t have to work. They only had to be safe. But after 1962, the FDA required that they actually work. In 1976, devices were added. In 1983, there was a recognition that there were many orphan products that needed help, and so the orphan amendments basically added incentives to studying and getting approved orphan products.

In 1984, generic products were first introduced. And then in 1994, dietary supplements were pulled out of the Food, Drug and Cosmetic act, and one of the reasons why you see as many dietary supplements as you currently do. In 1992, user fees were added. User fees required companies to partially fund the review of their products so that the process could get sped up.

As it stands now, Food and Drug Administration is responsible for the pre market clearance of drugs, biologics and devices. This means the FDA must say yes first before the product can travel across Interstate lines. Foods and cosmetics are regulated in a post market process. That means they enter the market first and if there’s a problem, the FDA then looks into it.

Overall, this makes up about 20% of all dollars spent in the United States. What the Food, Drug and Cosmetic Act says the FDA will do is prohibit interstate commerce of unapproved products, require the companies generate substantial evidence of safety and efficacy, and submit that to the FDA to form the basis of an approval, and permits the FDA to grant exemptions from the law so that the products can be studied and determined whether they’re safe and efficacious.

All of the regulation is for interstate commerce. The product is not intended to cross state lines, in other words, to do everything within New York State, for example, the FDA is not involved in. It also means the FDA is not involved in procedures because they’re not products across state lines.

The goal of the Center for Drug Evaluation and Research, which is the center that I work for, is to assure people have safe and effective products available to them. We do that by monitoring drug development. Most of this process is confidential. We approve new products that are found to be safe and efficacious. Again, this is confidential. And then we monitor those products after they’re on the market to make sure that any of the adverse events that are known are labeled on the products.

During the development approval phase, we keep the manufacturer’s information confidential. But after approval, we post that information so that everybody can see what we’ve done. I’ve mentioned 2 stages of development: approved use and investigational use. Approved use is when the marketing of an approved product is used for its improved indications. Approved products can also be used off label if, in the physician’s opinion, the use of the product is in the patient’s best interest, so this lets physicians give whatever products are available as long as they believe it’s in the patient’s best interest.

Investigational use may be an approved product used for an unapproved use. Or it may be an unapproved product. Either way, the FDA can give permission for these unapproved products to be used in monitored conditions, under the watch of the FDA.

What does the FDA not do? The FDA does not conduct clinical trials. That’s all done by the individual companies. The FDA does not choose which company will study or market any particular product. The FDA cannot force companies to market particular products. The FDA does not regulate the practice of medicine. In other words, we don’t tell doctors which products to give to which patients.

If I leave you with one message throughout my talk,  that’s all drugs have some risk, at least all that do something. Our assessment of the risk improves as more individuals receive the drug product. But even after marketing a product for a number of years, we rarely know all the risks of a particular product.

So how much study is enough? How does the FDA decide when to approve a product? Food, Drug and Cosmetic Act says the decision will be made when there is enough safety and efficacy information that it can be determined by experts using adequate and well controlled investigations. Product must be shown to have the effect it purports under the conditions of use suggested in the labeling.

You can tell the language I just read is from the law. I don’t usually use the word “reports” for anything.

The key is the product only has to do what it says it will do for the population it says it will do it in the labeling. To establish efficacy, the FDA does not use and is not allowed by law to use endorsements from individuals, random experience or uncontrolled studies. It has to use adequate and well-controlled studies. The type of evidence that’s considered level one evidence.

Ultimately, we make a decision based on the benefits to the risks, do the benefits outweigh the risks? To reemphasize, it’s determination by experts in well-controlled investigations.

Let me tell you a little bit about my part at the FDA. I joined the FDA in 1987. My father was an ophthalmologist in Ridgefield, CT, and I was going to join him in practice. Shortly before I finished my ophthalmology residency, the only ophthalmologist currently at the FDA left the FDA, and the FDA needed an ophthalmologist. I agreed to join the FDA at least for a little while… 36 years ago.

My impression of the FDA before I joined was that the FDA was too slow. Why did it take so long for products to get approved and be available to patients? Was there a way to speed up the development and still be able to make sure that the products that were getting approved worked?

I set five goals for myself when I joined the FDA. The first goal was to always follow the laws. Two laws, actually, one, the Food, Drug, and Cosmetic Act, and the other the Public Health Service Act. Food, Drug and Cosmetic Act relates to drugs, devices and cosmetics and foods, and the Public Health Service Act does the same thing for biologics.

Second was to always follow the science. Scientific evidence needed to be followed and it needed to make sense.

Third was to make sure that any product I approved was of benefit to a patient, or at least aided physicians in benefiting patients.

The fourth was to make sure that I had a reason for every action I took. And that I would be able to, if needed, defend that decision before a Congressional panel. A couple of years before I joined the FDA, there had been a congressional inquiry over some actions taken for ophthalmic products. It had not gone well. I was going to make sure that didn’t happen again.

The fifth was that I would not be the one who slowed up the process. 

I’ll give you a little bit of before and after of when I came to the FDA. It’s not all the products I was involved with. It’s only the products that were approved for eye indications. I have over the years supervised several other areas beside ophthalmology. But I’m not going to talk about those and I’m prohibited about talking about products that weren’t approved. We still hold that information confidential.

Starting with the anti-infectives you see a list here of the anti-infectives that were approved on the left column during the first 50 years of the Food, Drug and Cosmetic Act. The column on the right shows the additional approvals of products during my tenure. The ocular anti-infectives were probably the biggest class approved before 1987.

But in the time afterward, we’ve doubled the number of products that are approved in the area of anti-infectives, including five new products and a new class of anti-infectives. And we need new classes of anti-infectives because the bugs keep developing resistance.

Ocular steroids was another area that we had products in before ‘87. But again, we doubled the products that were available in 1987, including some that were stronger than anything that had been approved before, and some with less adverse events than had ever been available before. We also doubled the number of combination products with steroid and anti-infectives.

Biggest gains are probably things like reducing intraocular pressure, a treatment that’s used for patients with glaucoma. As you can see from this list, and I’m not going to go through all the different products, we started with relatively few products and we’ve now added triple the number of products to give physicians choices, give patients choices, of how to treat their glaucoma.

Antivirals are frequently difficult to go and treat but again, we’ve doubled the number of antivirals that are available for various infections, including things that had never before been available for patients with HIV.

Pupil dilation is important in order for physicians to be able to do the exams, and we doubled the products that were available for being able to dilate the pupil.

Dyes, also helpful in diagnostics doubled the number of products available. As far as the diagnostic situation.

Then there were a number of products for which there was only one product available in that particular category. Each case we’ve again made at least two products available so that their are physician choices and patient choices.

Anesthetics, we had one. Now we have 5, as well a combination with the dye.

One area I’ve not been involved in adding any products to, was the dissolution of enzymes basically that hold the lens in place. The reason I haven’t added any of those products is because that was a way of removing cataracts that’s no longer done. So there really wasn’t any need to go and add anymore products for a procedure that’s not done anymore.

Allergic conjunctivitis. Had no products approved to be used. We’ve now added 13.

Macular degeneration, no products approved. Now we have 7 different products. Biosimilars, which are essentially generics of those products. Not only are these products good for macular degeneration, in many cases they’re good for diabetic retinopathy. They’re good for diabetic macular edema. They’re good for retinal vein occlusions. Tremendous health, tremendous slowing and or reversal of products that we had nothing for before.

When we do surgery, we need to control the inflammation. We had nothing for post operative inflammation. Now we have 4 different products.

Dry eye. Dr. Roberts mentioned this, we had nothing. Now we have 4 different products.

Reversing the pupils. Most people that have had dilation sometime need to go back and do things more rapidly than waiting for the product to wear off. We now have two products that will do that.

Geographic atrophy. A disease which takes large portions of somebody’s visual fields and removes it. We now have two products that slow that process.

And a bunch of products where we, at least we have one agent for things we didn’t have – neurotrophic keratitis. We had nothing. Presbyopia, we had nothing. Treatment of amblyopia, which occurs in kids. That becomes a lifetime problem. We have a method of treating with drugs, not just with patching. Helps for glaucoma surgery, and a type of blepharitis, all of which we did not have products we now have solutions for those diseases.

So I’m happy to take any questions.

(Question 1)

That is correct. You’re mentioning a couple. So Bromfenac is one of the products that reduces inflammation. Diclofenac is another known by several different trade names. They get upset when I use trade names, so I just use the generic name. Ketorolac, is another, and Nepafenac. Four different options for post operative inflammation. It’s all approved after 1987.

(Question 2)

Most of the time the FDA doesn’t do the promoting. The individual companies that got approved do a pretty good job generally of telling everybody they can find that the products have been approved. The FDA does post a list of everything that’s been approved as well as that after approval, the information that led to that approval, so clinicians can see what the studies were that supported the approval and they’ll know how it was used to get approved.

That’s posted on FDA’s website. I know everybody daily reads the FDA’s website. If you do want to,  www.fda.gov, you can actually find all this information. Difficulty with new products is coming up with new endpoints, because anytime we have a new disease that has has not been approved before, people have difficulty figuring out how are we going to prove this works. That’s probably, from my perspective, the biggest thing that I’ve been able to help with is giving companies a pathway to be able to show the product is safe and efficacious. So that it will ultimately lead to approval.

(Question 3)

So any talk that I give is automatically considered in the public domain and this can be shared by the Lighthouse Guild as long and as much as they want.

Roberts:

I have two questions for you. So the two questions that I get asked often is how long does the process take? How long does it take for a drug to get approved?

Chambers:

So, the simple answer is too long. And I still say that even having worked at the FDA. Generally, development, first, figuring out what the product is like, takes somewhere between 3 and 10 years for most products. That’s from the time they first decide, OK, this molecule I can make it repeatedly. So now I’m going to put it in animals. And it generally goes into animals for initial safety. And then it starts going through studies in humans.

The FDA portion of that approval process generally lasts somewhere between six months and 12 months. Although the second product that I was involved in approving, we did it in 88 days, so sometimes it can be done faster.

Roberts:

And the second half of the same question is, how much does it cost? How much does it cost to get a new product on the market?

Chambers:

I have no idea. Because for us, cost is not an issue, neither the approval afterward, how much it’s going to cost the public to go and use, is not part of the decision. The development is not part of the decision. We stick to the law and the science. We want them to show that the product is safe and efficacious. And if that’s the case, we approve it.

(Question 4)

So we can. The question is what happens if we if the FDA finds the product is either not useful or is problematic? The FDA monitors, you know, after approval, we continue to monitor what goes on with those particular products because as I mentioned, we don’t know everything about. The risks at the first time of approval. We could know what it was. We could wait 30 years and figure out all the different risks, and in the meantime, nobody would have access to that product. And we make a conscious decision. We’re going to put a product out on the market and we’re going to monitor what goes on.

If at any point we find out safety problems, most of the time we will try to put warnings on the product first. If we find warnings on the product don’t work, we will pull the product and basically stop marketing of that particular product. I actually have not had any products that I’ve approved that have ultimately been withdrawn for safety.

Roberts:

So I saw two questions I saw one there and then congressman below you get the last word.

(Question 5)

Chambers:

None of that has applied to the drug development process. There have been pushes to limit testing on for cosmetics, but there’s not been a ban on testing animals for human drugs. That said, the effort is always to only use animals when absolutely necessary, and to use the lowest form of species possible as far as testing any animal species. There is no reason to use dogs or monkeys or other things when something can be done in vitro and not even have to use animals at all, or if it can be done in mice and rats where you’re looking for basic information.

(Question 6)

Roberts:

For the benefit of the people who are listening online, could you kind of summarize that question?

Chambers:

The question was basically, how did the opioid crisis occur and is there any way to keep it from happening again? Simplified it a little bit in what you said.

So the opioid crisis, at least from my perspective started, basically, when I was at first in medical school. And during when I was in medical school, we were told that we currently, we as physicians, were not treating pain well enough and people were not healing because they had pain and that inhibited healing.

And that is true. It does inhibit healing, but that doesn’t necessarily mean you need to give opioids to treat the pain. But with that as a background, telling basically the medical community that you needed to treat pain more completely, there was a push by a number of pharmaceutical companies to develop different products that would treat that pain.

Opioids is one area that was initially well known and was expanded. The Food, Drug and Cosmetic Act allows companies to get approved as long as it does what it says it does for that population. And these products did go and treat pain for individuals that needed it.

The goal from the Food and Drug Administration was to provide medications for those terminally ill patients that had cancer, that had intractable pain, initially for following surgery for a couple of days, not the long term types of things that you hear about. The physician community did not use the products always as they are labeled.

And as I said, it may be labeled to be given a short period of time, but the Food and Drug Administration does not restrict the practice of medicine and physicians can go and give that. And some, in my opinion, less scrupulous physicians have given… You can read about the various paper mills, basically that went on in physicians offices, where people would come in, sometime even online, and get a prescription for an opioid for 30 days.

And all of these opioids are habit forming, and taken long enough and you get addicted. And that has led to a tremendous cost to the US public.

I don’t have a solution. I don’t know that the Food, Drug and Cosmetic Act does not put this within the purview of the FDA, the bigger issue that needs to get done.

Roberts:

Dr. Chambers, thank you again for all of the that you’ve done on behalf of the American people, particularly in terms of caring for their eyes. We’re honored to have you as our Bressler Award winner today.

Chambers:

Thank you very much.

Roberts:

In 1981, the Pisart Award was established to recognize an individual group or organization that has made significant contributions to vision science. Now referred to as the Pisart Award in Technological Innovation, the award recognizes those whose technological innovations improves the lives of people with vision loss.

Saqib Shaikh is the recipient of the 2023 Pisart Award. Mr. Shaikh is driven by the power of technology to improve the lives of people with vision loss. As someone who is blind, he has personal experience of such technology to which he owes his success. Mr. Shaikh, an engineering manager at Microsoft, led the development of Seeing AI. This is a free mobile app which leverages artificial intelligence to assist someone who is visually impaired with daily tasks. The technology has been called life changing by users and recognized with awards from industry, government and blindness organizations.

A speaker at events worldwide from schools and community centers to sports stadiums and programs with heads of state, Mr. Shaikh holds a BSc in Computer Science and MSc in artificial intelligence. I am pleased to introduce the recipient of the 2023 Pisart Award in Technological Innovation, Saqib Shaikh.

Shaikh:

Thank you so much for that warm welcome and it is a true honor to receive this award for the recognition and to be invited here today.

I lost my sight when I was 7, and since then I’ve always been thinking of, you know, what are the strategies? What are the ways that we can use different techniques? And today a lot of those techniques are technology to find the workarounds in daily lives. I guess the cool kids today would say life hacks.

But I feel so blessed, very fortunate that I got to go to a school for the blind where I was introduced to a whole range of gadgets and gizmos to make the world more accessible.

It was this amazing place from the age of say 10 to 18 where I got to spend time with sight and vision not being a factor at all. All the material was specially adapted in Braille. All the diagrams were raised, the maps of the world were 3D. There was audible sports of every sort, and music and technology.

And it’s only now, much later that I look back at that, and the work of the Lighthouse and organizations like this, and I think my goodness, there’s a lot of human effort that goes into making that happen. How do you make an environment where disability is not even considered? Where you can grow up as a child and it not be something you think about day-to-day?

I certainly feel so blessed by that. But then I also see, as an acknowledgement that set me off on a track. I got to see early talking computers. Scanners that could turn the printed word into spoken output. Like I said, producing tactile diagrams and Braille. Oh my goodness, so many machines, so many cool gadgets. You can tell I’m a techie.

But that’s what set my path. It set my path. That’s where I met some of my mentors who taught me how to code, who taught me that tippity tap tippy tap. You can wiggle your fingers and make something.

And that was something I was fascinated by as a kid, this idea that you do some coding, you make something that can really have a meaningful impact on someone’s life that can make the difference between being able to and not being able to.

And I was hooked. So, that took me to university and beyond, and eventually to the gates of Microsoft. But as someone who was blind, I had an experience early on where I was told that you know, “you’re just a blind guy making things for blind guys”, and I was like, OK, I’m not doing that. I want to prove that I can be an engineer.

And so my first ten years at Microsoft, that was my goal. I said, OK, I’m going to prove that I can work on all these different products and in many ways put on the back burner of this idea that technology can truly help people.

But it kept coming back. I remember a day at university when everything was too challenging. The course wasn’t accessible, the material wasn’t in a form that could be read and I remember friends saying to me, why don’t you invent the thing that makes these accessible? Keep going and one day you might.

And that struck me because as I researched, I understood so many of the things we take for granted today were often the collaboration between a scientist and someone with a disability.

SMS was first adopted by people who are hard of hearing.

The telephone, Alexander Graham Bell had a lot of his inspiration because family members were hard of hearing.

And the list goes on. The iPhone touch screen was invented by someone who had pain in his wrist and couldn’t type and wanted a better way.

And you know, I can list twenty of these. I think that someone should write a book about it. It’s like so much of what we depend on from text to speech, speech recognition, owes its origin to finding solutions and the partnerships of people with disabilities and scientists and engineers.

So, 10 years into my career at Microsoft, we have a new CEO at that time. And he says you can spend the next week working on whatever you’re interested in.

And so I sat down like, OK, this is an interesting question. What am I interested in? And there’s far back memories of using technology to help people and to change the world like that came back. And so I got together with like minded people. We formed a bit of a motley crew of people who wanted to do this.

And it wasn’t easy. It wasn’t a straight path, but over the years we created a free mobile app called Seeing AI.

And so I’m going to show you a video of what we ended up making and releasing a few years ago now.

And this is the story that I love from one of our users.

App User

My take on life is that life is definitely there for the taking. What you put in is what you’ll get out. Two things important to me in life are family and music. They both play a huge part in my life. Technology allows me to be my own one man band.

I try to be as independent as I can and the way that I do that mostly is with low tech, which is a white cane and high tech which is a phone.

Seeing AI is one of the biggest deals in technology I think at the moment for visually impaired users, it’s an app that you can read almost anything anywhere with it.

It has a multitude of functions and they all work together to produce something that you can use whenever you need it.

It might even be considered to be a Swiss army knife of apps.

Of all the parts of Seeing AI, I really do think short text is the biggest of the game changers. Because I’ve never seen anything like that in any other app before, and I like being in the back of cabs, in buses and pointing it out the window and seeing what I pass on the way to places.

One of the greatest things about short text for me is that if there’s no one else in the house, I can sort the post into who’s who. So I don’t open my wife’s post and she doesn’t get cross with me.

Currency is a very useful channel because sometimes it’s very difficult to know what notes actually are. So with currency I can detect that straight away.

Scene is actually really cool. It’s quite descriptive really.

I think that’s pretty amazing.

In my view, one of the best parts of Seeing AI is the ability to read pictures from social media. Because so many times someone will send me a picture of something that I cannot understand. So I will share that picture to seeing AI. And then I’ll get a description of what it is.

And it changed how I can view social media It feels like I can participate far more than I could before.

With handwriting channel, I was actually able to read a card from a family member last year, and that’s the first time I’d actually been able to do that without help.

We can tell if Jake’s been writing well if the handwriting tab can recognize it, that’s good proof, really.

The effect of having Seeing AI to hand all the time is like having somebody who can see in your pocket.

There’s so much more that I can do now that. I couldn’t before. I think Seeing AI really is a huge technological. Step down the road and I hope that we can continue down the road like this for many years to come.

Shaikh:

Yeah. Thank you. I love hearing from viewers like that. I often think that, like my whole job is a conversation between people with vision loss on the one side and the scientists there in Microsoft and academia on the other. So, it’s just so rewarding to hear when people find this stuff useful.

So, we’re going to talk a little bit about where we’re going next because it keeps going. We’re investigating the latest technology, what can we bring to bear? What are the problems people are facing in their daily lives? Everything from operating appliances like microwaves and dishwashers all the way through to education, employment, how do we reduce the unemployment rate and so forth?

We’re doing a bunch of work in augmented reality. How do you get technology to understand the 3D world around you? And I think I’m going to skip the next video just cause of time.

OK, let’s, let’s go. Let my other self describe it go.

(from video)

As I pan the phone around the room, I hear objects being announced as they come into view. Because I’m wearing headphones, I hear the sounds coming from the 3D location.

Let’s take a look at placing a beacon. Let’s go over to the actions menu. This shows me a list of everything that’s been detected in the room so far. I’m going to select the door, I hear a beacon sound in my headphones, and visually we see an arrow pointing towards the door and a label showing the distance.

As they move towards the door, the distance goes down and I can hear the beacon getting louder and as we reach the door we hear this nice little success sound to indicate we reach there and sure enough we could walk straight through the door without touching the side.

Indoor navigation is an exciting new feature which allows one person to lay down a trail of virtual waypoints. Someone can then follow the route later on by following the audio cues.

Now we hear a sound coming from the first waypoint, and visually a series of balls stretching out along the route. Let’s walk towards the sound and that pop indicates we’ve hit the first waypoint.

Let’s keep going.

There’s another one.

That success sound indicates we’ve reached our destination.

Now augmented reality is all about hearing and seeing things that aren’t really there. My wife, when I first tried to explain this to her, said, “so like hallucinations”, I was like, that’s not quite the idea. But it’s really fascinating where the technology is taking us this idea that someone who’s blind can hear things around them in 3D space, follow things, be guided around.

And the AI keeps getting better. We’re still working with the community to understand their problems, find the solutions. And I’m going to show a couple of the demos of things we released just last week. So you would have heard the descriptions of the world around you. I was with my son at the aquarium in Seattle and a picture that he took, the description we can get with the very latest technology is just absolutely incredible.

AI Program

The image captures a close up view of a small rocky pool of water inhabited by various starfish.

The pool is surrounded by rocks and the water is clear, allowing a detailed view of the starfish and the rocky bottom of the pool. The starfish are in a variety of colors and sizes, including some with a reddish orange hue and others that are beige with brown patterns.

The starfish are scattered throughout the pool, some partially submerged in water, while others are fully visible. Their arms are spread out, showcasing their iconic star shape.

The rocky bottom of the pool is visible through the clear water. The rocks are small and appear to be smooth, with colors ranging from dark brown to light beige. There are also larger, irregularly shaped rocks that are reddish brown.

There is a yellow sign on a rock on the right side of the image with the text, but please don’t touch.

Shaikh:

So this is like incredible like I never thought we’d give this much detail from AI. So you’re showing it a photo. And the technology is able to give you that much detail, which for education is the whole new level that we’re just on the on the verge of right now. And taking into another scenario, the other thing we released last week was this idea of, what if you could talk to your phone and find out about the things that the camera can see? So this is an example where someone took a picture of a menu and then was talking to their phone about the menu.

App User #2:

After scanning this restroom menu in seeing AI, what are the categories?

AI Program

The categories in the document are antipasti salads, pizza with subcategories, red and white specials, and dessert.

App User #2:

What Antipasto dishes are there?

AI Program

There are three antipasti dishes mentioned in the document.

One, oven roasted asparagus with paprika aioli, red onion, tomatoes, arugula and lemon zest.

Two, polenta with marinara sauce, Gran Torino, homemade meatballs and herbs.

Three, oven roasted Castelvetrano olives marinated with chilies, garlic and lemon.

App User #2:

How much does the asparagus antipasti cost?

AI Program

The asparagus antipasti costs $12.00.

Shaikh:

These are some examples of things we’re working on in the lab, and this is the free app that people can download called Seeing AI and, I just gotta say, I feel so fortunate to be on this journey to, and you know it’s not finished. I just feel like, you know, in the years ahead, what can technology do? What can we enable? What are the problems we can solve? If I try and dream about the future for me, as someone with vision loss, I imagine a little friend sitting on my shoulder, whispering in my ear.

And I kind of feel like it’s going to come to every part of life, whether it is school all the way through to your family life all the way through to employment. I am just so optimistic at what the possibilities are going to be and feel so fortunate to be on this journey and once again so honored to be the recipient of the award. Yes, thank you very much.

Audience Member:

I have two questions. First one is I I understand that it’s only for iPhones so far. Is there any effort to make it for Android 2 or has it already happened?

Shaikh:

It is a work in progress, very soon.

Audience Member:

That’s good to know. Thank you. And the second, what do you think would be the best way to teach someone to use that app, do you have any suggestions or?

Shaikh:

It sort of depends on sort of what what stage of life and what’s interesting to them. So you know it could just be reading things and seeing like I know some kids will play games where they’re just reading what are all all the texts around you. There’s text on the signs on the walls, on every object. And for children often it’s just that fascination and curiosity about the world around you. I think we focus so much on productivity. Let’s not forget curiosity as well.

Roberts:

So, I have a question about repurposing of technology. So sometimes technology is developed for one purpose, and then can be repurposed to do something else.

Shaikh:

Absolutely. And I spoke a bit about this, but this is this idea of inclusive design that we’re all different. All of us are humans. We’re all very different people. And to any organization in your company, if you want to serve the 7 billion people on the Planet, one of the best ways is to target the people who are typically excluded, and if you include those people, include enough different types of excluded people, you’re actually going to just, you know, include everyone, and that’s something we should all strive for. And that’s when these technologies become part of the mainstream.

Roberts:

So I was once demonstrating some facial recognition device to someone who is sighted. And the person said to me, boy, would I love that for a cocktail party to know somebody’s name. Right? So great technology is actually great for everyone. You must have examples.

Shaikh:

And yeah, so as I say, you just imagine the smartphones in your pocket and you know technology that was maybe considered on the ad. I said mention the touch screen or you know your assistant that can now talk to you and understand what you say. These are all critical tools for people with disabilities in the beginning. And now they’re just things that everyone finds useful. And part of the problem is, you know if you look around, if you want to find out where is the future, I do believe you should look at people with disabilities and what are the crazy gadgets they are using because they have the greatest need to find the solutions. So absolutely, I do think that these special technologies will become part of the mainstream always.

(QUESTION)

No, we’ve worked with so many prototypes. I think the challenge is how do you get this out to the world? And we’re much closer than we ever have been before because we’ve been talking about a camera that you wear for many years now, and to Dr. Roberts’s point, it’s just now that the mainstream is catching up. So, you know, how do you make something on a factory assembly line at the right cost.

But I think the world has caught up with people with vision loss, so I think we’ll see something before too long.

(QUESTION)

And we do our certainly do our own user research and and that definitely guides all the developments that we did.

(QUESTION)

Alright, thank you. Love to hear more about your research. Appreciate that.

Roberts:

So, Mr. Shaikh, we we thank you for all that you’ve done and you have made us very excited as we look forward to the future and thank you for being our Pisart Award recipient for 2023.

Congresswoman Carolyn Maloney is this year’s recipient of the Dr. Alan Morse Lecture in Advocacy.

The lecture is named for Dr. Alan R. Morse, Lighthouse Guild’s president of emeritus, for his years of dedicated leadership of Lighthouse Guild and his tireless advocacy for people with vision loss.

Established in 2022, it acknowledges individuals who through leadership, raising awareness and addressing barriers are working to make a world where no person is limited by their sensory capacity. We are honored to have the Congresswoman to join us today. Miss Maloney represented the East Side of Manhattan and parts of Brooklyn and Queens in the US Congress for 30 years, from 1993 to 2023. She was the first woman to represent New York’s 12th Congressional District and the first woman to chair the House Committee on Oversight and Reform and the Joint Economic Committee.

Legislation she sponsored, including the James Zadroga 9/11 Health and Compensation Act to help those who became sick because of exposure to toxins from the destruction of the World Trade Center. She is a member of the Advisory Board of the Smithsonian American Women’s History Museum, created by legislation she authored, a member of the Council of Foreign Relations and a member of the Board of the Manhattan Chamber of Commerce. Representative Maloney is the Eleanor Roosevelt Distinguished Leader in Residence at Hunter College of the City of New York.

I am honored to introduce the 2023 Dr. Alan R. Morse Lecture in Advocacy recipient, Congresswoman Carolyn Maloney.

Maloney:

Thank you so much for that warm introduction and I want to express my deepest gratitude to the Lighthouse Guild for this extraordinary recognition of the Alan Morse Lecture in Advocacy award, and for the remarkable work that you do every single day.

I particularly want to recognize the Lighthouse Guild’s chair James Dubin and its President and CEO, Doctor Calvin Roberts. The work you and your colleagues are doing to break down barriers for the people who are visually impaired is incredibly important.

The Lighthouse Guild has been a true leader in the effort to make the world accessible for so many people.

Earlier today, Doctor Calvin Roberts and his team here at Lighthouse explained to the awardees all of the services that you provide, which is extraordinary and through this demonstration really told us that the Lighthouse is the leading establishment for the visually impaired, not only in New York City, which I knew in New York State, but really for the entire United States, possibly the world. I always knew that New York was the leader in commerce.

We were the leader of high tech on the East Coast commerce and culture and communications, but now I know we lead in in helping the visually challenged and I want to thank all of the staff and all the people who work here, all the professionals, the doctors, the staff, all of you.

It’s really been an inspirational and learning time to just be here this morning at the Lighthouse Guild. It is also an honor to share this stage with Doctor Chambers and with Mr. Shaikh, two outstanding innovators in their own field.

10 years ago, two great Organizations, Lighthouse International and the Jewish Guild of Healthcare joined forces. In joining together they became stronger and better able to advocate for the resources needed for people who are blind or visually impaired. I’ve been involved with the Lighthouse and efforts to help the visually impaired for decades.

Early in my career in Congress, Lighthouse International was located directly across the street from my office, so I was delighted to spend a lot of spare time there with the staff and with the volunteers and learning about the wonderful work that you do, work that is now being carried out by the Lighthouse Guild.

Back in the days of appropriation earmarks, which they stopped for a while, I was able to secure congressional funding to support the Lighthouse’s work. But these grants were relatively small and I wanted to do more. So when I learned from the Lighthouse that millions of Americans were not able to access the medical equipment they needed because Medicare does not cover the cost, I went to work with the Guild. As you probably know, Medicare has two critical complementary functions.

It serves as an insurance policy for the elderly and for the disabled of any age, as long as they have worked 40 quarters. Both populations include people who are visually impaired. Literally thousands of people. I think we can all agree that vision loss is a medical problem, so Medicare should cover treatment. But when it comes to low vision devices, it does not.

In 2008, the Centers for Medicare and Medicaid Services so-called CMS ruled that devices such as Low Vision devices that that use a lens are excluded from coverage. The logic behind this decision escapes me, but as long as it is in place, the only solution is federal legislation.

Visual impairments is incredibly common. The severity can range from blindness to poor vision that cannot be completely corrected by glasses, contact lenses, or medication or surgery. Nearly 20 million Americans, roughly 8% of the US population, have visual impairments, including approximately 18% of those who are aged 65 or older.

Visual impairments include blindness and it’s one of the leading causes of loss of independence among people aged 65 or older. Among the population aged 18 to 64, fewer than half, 46%, of those who have difficulty seeing are employed, compared to over 3/4 for those who can see.

Fortunately, clever inventors, some of whom are with us today, have designed low vision devices that can enable people with severe visual impairments to use their residual vision by making objects appear bigger, brighter, darker or closer with improved contrast.

These devices can make it easier for visually impaired people to find a job. They can restore independence for the elderly. However, Low Vision devices can be too expensive for most people.

When representatives of the lighthouse and other advocates told me that Medicare did not cover low vision devices, I was really appalled.

It’s bad enough that Medicare does not cover eyeglasses and contact lenses, items that are routinely used by millions of Americans to correct their vision. But people who need low vision devices have severe conditions. To deny them coverage for effective technology that can make a significant improvement in their ability to see is simply unfair.

Along with Representative Bilirakis, I introduced the bipartisan Medicare Demonstration of Coverage for Low Vision Devices Act in 2013 and I have introduced it in every additional Congress when I was in office. The bill funded a 5 year demonstration project that would put low vision devices in the hands of Medicare beneficiaries who were determined after a clinical evaluation to be unable to benefit from a low vision device.

I thought this legislation would be an easy sell. After all, most members of Congress know someone living with impaired vision, and every single Congressional District has literally thousands of people who suffer from serious vision loss.

But it is precisely the universality of the problem that is a challenge. Medical equipment is expensive. That’s why we chose to propose a pilot program first. That way we would be able to see how much a program like this would cost. We would know who applies for the devices and what impact it was having on people’s lives.

We hoped that once the program was underway, it would be so beneficial and there would be so much public support that it would become a permanent program, helping so many people. We thought if it helps younger disabled people get jobs, it might even be cost effective. If it helps, elderly people lead better lives, engage more with their friends and families, take better care of themselves, the positive results would make it possible to argue that the cost was worthwhile for our society.

And I believe it is time for Medicare to change. Health care isn’t just doctors, visits and surgery. Healthcare means giving people the equipment they need to overcome medical challenges.

Technology is as much a part of treatment as pills or surgery, and in the case of low vision devices, the benefits are clear. Medicare pays for wheelchairs for people who cannot walk and lifts for people who cannot climb stairs. Medicare, in my opinion, should also pay for equipment that helps people see, which is so important to their lives and their enjoyment of their lives.

Well, I’m no longer in Congress and I can no longer introduce legislation, but I can give you a vision of what you can accomplish.

Lighthouse Guild and its allies need to get to work to mobilize the thousands and thousands of people who live with severe vision impairments and are on Medicare and could benefit from these devices. They need to write their members of Congress, meet with them, organize fund banks petition drives, raise awareness and demand action.

In his introduction, the doctor mentioned a bill that I had written to help the 9/11 heroes who got sick because of the toxin that’s at 9/11. We lost 3000 people on 9/11, but thousands more have died or become sick because of the toxins they were exposed to.

And when we heard from those members that we organized and tried to help them. We did a national survey that found and we singled out and found people in every single Congressional District in the country and got them to lobby their Congress people to support the James Zadroga 9/11 Health and Compensation bill that I wrote. We held a monthly press conference to raise awareness, which I call the drum beat. We built a team and called people to action, and we got people who were sick to come with us to Congress to really lobby the leaders in Congress and their own Congress members. We had celebrity champions.

We demanded and held many high profile hearings on the subject and the need for the health care. We secured numerous editorials in support of our cause across the country. I even wore a fireman’s coat until the program was passed.

I was awarded a fireman’s coat with a name on it, from the firefighters, and I just offhand said I’m going to wear this coat until we pass the bill. It’s been called one of the most effective members of Congress acts to pass legislation ever. If I ever didn’t have the coat on, people would come up, Where’s the coat? Where’s the coat?

And you’d be surprised after even months of talking about it, writing them, calling them members of Congress would walk up and say, why are you wearing the coat? And then I tell them because they don’t have the healthcare they deserve. And they said, oh my God, let me get on the bill. It took years and years of pressure. We got piecemeal funding over the years, but it took 18 years before we succeeded and literally made it an entitlement that was secure for the lives of everyone affected.

This cause is just as important, it will improve lives, possibly save lives, but the law won’t change on its own. It’s important, and I know how important it is, that you need to let members of Congress know how essential it is over and over again. You need to tell the stories, the personal stories of how it affects people’s lives. You need to let members of the public know that vulnerable people, their neighbors, their parents, their grandparents are being denied the chance to see by, I would say, a wrong decision by bureaucrats who made a, I would say, a disastrous decision in 2008 and Congress can act and must act to overturn this unfortunate, I’d say reckless decision.

Let the media know about the horror stories. Let them hear from the people whose vision could be improved, who are denied critically needed services.

This is not a policy that will change on its own. It needs advocates, and it needs stories. Tell your stories to your Congress members. Tell them to go down to the floor of Congress and tell it to the American public. It needs attention and continuous work until it’s done.

I’ve always said that everything is impossible until it’s done.

And almost every bill that I’ve ever worked on and, I’ve authored and passed well over 80, people have told me it’s impossible. Why are you working on it? Why are you working it? Because I believe in it. Because I think it’s important. It took years. But not only did we pass the 9/11 health bill, but we eventually made it a national entitlement program.

Which is extraordinary. Medicare, Medicaid, Social Security, our entitlements, and the James Zadroga 9/11 Health and Compensation program because we made an effort that went across the entire country and involved every Congressional District and their Congress members.

By the time it passed, everyone voted on it. Everyone voted for it, except for two or three people.

The 2nd Ave. subway was another project of mine to give another example. It had been on the books for 100 years. There had been 3 groundbreakings and all we had to show for it were empty, decaying tunnels. Every time we had a financial crisis, they took the money from the subway and diverted it elsewhere.

People told me it would never happen. During the time we were building it, everybody didn’t believe it would happen, most asked question I got was why are you working on it? It’s never going to happen.

When I started, both the governor and the mayor opposed it. They had other priorities.

But my staff and I made it our priority and the 4th time was a charm. It’s now the best, considered the best, and it was the largest construction project in the whole United States and it’s considered the best new subway in the country. When I get depressed, I go and ride the 2nd Ave. Subway.

It’s new, it’s clean, it’s nice. Another impossible bill to give my last example was when I took on the financial institutions who were charging unfair, deceptive, high fees for credit cards.

I couldn’t go to the floor of Congress or go to the store to buy groceries without people coming up and complaining about unfair, deceptive fees from the credit card companies.

So I authored the Credit Card Holders Bill of Rights.

Opposition was fierce, but too many consumers were being hurt and after years of work, we finally passed it. It was such an important bill that a documentary film was made on the efforts that we made to pass it and turn it into law. The Consumer Financial Protection Bureau found that it saves consumers over $16 billion.

As in, “B”, billion a year.

I call it the Maloney stimulus package because it put money back into the economy instead of into the pockets of banks. I could go on and on with other examples, but I just worked hard on it. It organized and brought people together.

And that’s what you need to do. As Margaret Meade wisely said, and I quote, “never doubt those small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

And this is absolutely doable if we all work together, we can make it happen. We can turn the promise of getting the vision devices into the hands of everyone who needs them across the country if we just get out there and do it. Thank you for this, award, I will cherish it. I’m deeply honored to be with so many outstanding people, and I’m fascinated with what you’re doing with AI. I think it’s just incredible. Thank you.

Roberts:

Please. All right. Well, then I’ll start out with the with with the first question. All right, so you said that the key to getting legislation passed is grassroots, that you got to get people together. So in a situation like we face where the organizations that that provide care the people who are blind and visually impaired are in general under resourced and small, they don’t have a lot of influence. How do you get all those groups together?

Maloney:

With a lot of hard work, it’s incredibly hard work.

You have to reach out. You have to meet with them. You have to educate them and you have to bring them together. You know, Congress, it’s really a democracy. If you get 218 votes, you could pass it in the House of Representatives. With 53 votes, you can pass it in the in the Senate and it’s law. You just have to get out there and do it. But you have to get a core of people together that develop educational tools. You have to get them out to the grassroots people. You have to get them into the hands of Congress members.

But if you don’t, Congress members respond to their constituents, you can talk to them and give them statistics and all kinds of information. That’s not going to move them. What moves them is when the visually impaired people who need it in their district are saying, congressman, why aren’t you helping me get this? If you can get a wheelchair for me, why can’t you help me see, and I would rather be able to see than anything else in the world. And numbers always count. See what’s really amazing about your effort is that so many people, many, many more than the 9/11 bill are on your side. The 9/11 bill is, you know, I don’t know how many thousands are in it, but that it’s hundreds of thousands. Millions. I think you said  20 million people are visually impaired in some statistics that we dug up on it.

So you have 20 million people who you need to reach to get out. If you get all of them calling their congressman, believe me, that’s going to happen. When we started out on this bill, we just kept pushing it and and I think it’s important that you put a human story on it. You have to get press, you have to get people looking at it and saying this is a scandal. Why isn’t this happening? By the time I wore the fireman’s coat to the, I even wore it to the Met Ball, and it took off on social media, and everyone, and then they were all writing and asked why hasn’t this happened? And I said because Congress hasn’t passed it. They said, well, they should be giving them the health care. Well, I would say they should be giving you the devices that can help you see, they don’t even give you glasses and that I think is wrong. I mean you gotta start with glasses I think. But these devices – they’ve improved over the years it used to be when I started on this bill. The device was like almost as big as a table, you know, but now it’s like a tablet. And the technology has improved, so it’s more doable, but it’s hard because people are not hearing from their constituents. When I came to tour in preparation of coming here, I was just trying to help your people. So I called just two offices of congress members.

You have a lobbying firm now and they say they can’t find anybody to even put the bill in. So I mean, we talked to the lobbying firm, you gotta start with the bill. You gotta get a bill in that’s bipartisan. And then you have to start getting members of Congress and use all the Lighthouses in America to help you organize and then all the other type of facilities for the visually impaired. But it’s a huge effort, and during this time, we would get piecemeal funding, but we finally got it funded as an entitlement which is literally extraordinary. I think they’re estimating the the program is now roughly $85 billion, you know, so it’s an amazing achievement to have have gotten it passed. Those of us that worked on that were very passionate about it, starting with the New York delegation and then we got the New Jersey, Connecticut. We got the whole Massachusetts and then we went to California and we got all the delegations working with us. If you want to work on this, I would talk to the AMA and the Hospital Association, because they have a very, very effective lobbying system for the funding formulas and for the things that are needed for people. But it’s not easy, but it’s doable if you work at it and you can make it happen and it’s the right thing to do. Think of the 20 million people that would benefit if we could get these devices expanded into Medicare.

Roberts:

All right. Thank you. On behalf of all New Yorkers.

Maloney:

Thank you.

Roberts:

All right. All right. Well, thank you to our awardees. These presentations were amazing, yeah, and very thought provoking. So thank you. Events like this only happened with the behind the scenes actions of our Lighthouse Guild team. And I want to thank Fernanda Garcia Pina for her work has made this day a success also.

I’d say thank you to Michael Boyd and his team and the IT department for their efforts that have enabled us to have these presentations here in the tech center. Finally, a big thank you to you all for attending and contributing and to the success of this in fact impactful program. Let’s have lunch.