Transcription excerpts from this episode

00:03

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

00:31

Hi, I’m Dawn Prall, Founder and Executive Director of The Support Site Foundation. MyMacDLife, the podcast you’re listening to, and tuning into right now, is empowered by The Support Site Foundation. We are a voice you can trust. MyMacDLife is the first podcast series about how to live your best life with macular degeneration.

01:01

MyMacDLife podcast is generously supported by Regeneron.

01:09

Well, hello, everybody. Welcome to MyMacDLife. Today we have a very special guest. Mr. Andy Burstein. How are you doing today?

01:17

I’m feeling great. Thanks. How are you?

01:19

I’m doing great. Thank you. I have a lot of questions for you. I hope you don’t mind. I’m very excited to learn more about you.

01:25

I’m looking forward to it. And thank you for including me, I appreciate it.

01:28

We’re so happy to have you. And I guess my very first question is, When did your involvement or association with The Support Site Foundation first begin?

01:38

Relatively recently. I’m still learning more. I was asked to participate in this program and jumped in headfirst. So I’m excited to share our story, our company’s story, but also have conversations and learn more as well.

01:52

Wonderful. So for our listeners, would you mind telling us what it is that you do and what your company is?

01:58

So my name is Andy Burstein. I live in West Philadelphia. My company is called Accessible Pharmacy Services for the blind. We’re a home delivery pharmacy and health care company. And we focus on supporting patients who are blind, deaf blind, and have low vision. We’re the only provider of its kind. We’re the largest blind owned healthcare company in the country. That’s very impressive. That’s really great. We think, in the world, but we’re not positive. So we’re just gonna

02:31

Look that up.

02:33

On Google and see if they have an answer.

02:36

That’s great. I was reading a little bit about it and that’s really interesting to me. Can you tell me how it’s different from a traditional pharmaceutical service provider? Being that you have a specific audience.

02:49

Sure. Everything we do is home delivery. So our headquarters is based in suburban Philadelphia. Our whole model is about merging accessibility and health care and working with individuals on a personal basis. Personalized medication, identifying the individual, identifying what challenges they may already have with their existing medication with their diabetes, how they’re currently managing it, and assembling a collection of solutions that empower them to live more independently, manage their own medication, manage their own diabetes, and ultimately live healthier lifestyles.

03:27

So if somebody wants to begin services with you all, how does that start? Is it a phone call? Is it an email?  What is the point of contact?

03:37

So let me take a step back and tell you about the evolution… the background of the company. The idea of the company started about five years ago, I started the company with my business partner, Alex. At the time, I was running a healthcare marketing firm and we were developing strategies around online accessibility, communication, accessibility, onsite accessibility. Our clients in the marketing firm were healthcare systems, pharmaceutical industry, independent physician practices; the veterinary industry. Our goal was to reach out to our clients and educate them on how they can be more accessible, to be able to expand their offering and their messages to their existing patients, and also to experience patient growth.

I decided to reach out to friends and family and people I knew who either had familiarity with the disability world or had a disability themselves, who could just give me insight into their experience. When it came to the area of blindness, I didn’t really have any friends or family who were blind or had much knowledge about blindness. There was one person who I knew through Little League, Alex. So Alex has sons and my sons played ball together. So I knew who Alex was. He lived near me and he was blind. So that’s what I knew about Alex. We started to develop some online solutions and I was able to get his email address. I emailed him. I was like, ‘Hey, I don’t know if you remember me. You know, from Little League, we’re developing this software. We’re trying to develop some other strategies. Are you free for a cup of coffee?’ He got back to me immediately, and we met for a cup of coffee. What was fascinating about it was that I didn’t know too much about him, but I got to hear Alex’s story. Alex was diagnosed with a condition called retinitis pigmentosa when he was in his late teens.

05:42

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

06:01

Conceptually, it’s a degenerative retinal disease. There’s no cure for it. It impacts different people differently. And you know how the deterioration of eyesight occurs that can happen very quickly. It can take years and years for it to occur. But by the time Alex graduated from college, he had lost most of his usable eyesight. He went to college at UNLV, because he wanted to be in the hospitality industry. He was taking classes at school, but he was also working part time in the casinos and hotels and realized there weren’t too many opportunities for blind hotel managers when he graduated college. So he moved back to Philadelphia. He was working in the hotel industry, but he went back to school, and ultimately to a PhD. He wrote his doctoral dissertation on the accessibility of the American Retail Marketplace for blind consumers. You know, how accessible retail experiences were on location on their websites and on the telephone. He published his doctoral dissertation on the top 100 retailers in America. Their accessibility. So here I am thinking I’ll have a cup of coffee. I can pick his brain a bit. I can learn a bit more about blindness. Little did I know that he’s arguably the foremost expert in retail accessibility for consumers who are blind in the country? A treasure trove!

07:23

That’s amazing. So let me backtrack. I’m curious about the inception of your connection and your interest in accessibility? What was your personal spark that led you on this path?

07:45

I hate to use the term the trend, but the trend of awareness for everything in the DEI space, diversity, equity and inclusion. So it’s been on my radar as a consumer, as a parent, as a member of society- just always embracing inclusion. Trying to be inclusive. The area of disability falls within that. Disability rights or human rights, disability rights or civil rights. As a member of society, as a consumer, it’s important for me to understand and embrace it. As a business person who was working in the healthcare field, it was important for me to be able to answer questions to my clients, and to my staff, about how we can be more inclusive. How my clients can be more inclusive, how we can be more inclusive in our company. Accessibility is smack in the middle of inclusion. We can wave the flag about being inclusive all day long. If someone with a disability can’t access me being inclusive, if I’m not inclusive, right. So learning about the Americans with Disabilities Act, learning about online accessibility and the inability of individuals to gain access to websites and information, and learning about blindness in particular, and how it intersects with online accessibility. Individuals who are blind, the way that they use the internet is that they use an Assistive Technology called a screen reader. For the most part, now, different people use different solutions. But for the most part, the screen reader is essentially a software that accesses websites and essentially reads the website out loud to the consumer.

One of the challenges that exists is that not all websites are compatible with screen readers. Through a combination of awareness through lawsuits, through the knowledge and growth of the industry, people are learning more and more about online accessibility. Individuals with low vision may use magnification, may use oversized monitors, may sit closer to the screen, and there are a lot of solutions to gain access to online accessibility. Our goal as I mentioned, as a consumer, is to learn more about accessibility, but also to be able to create solutions for our clients in the healthcare space.

10:09

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

10:27

If a website’s not accessible, it doesn’t make a difference what type of assistive or adaptive technology an individual has, or their desire to gain access to that information. They just can’t access it. Now imagine taking that concept of a website and imagine applying that to medication. Someone has a pill bottle, and they don’t know what the pill bottle is. They can’t read the instructions. They don’t know what the expiration date is. They don’t know what the warnings are. They now have to sort that and take it with other medications. They don’t know if it’s their medication, their child’s medication, their spouse’s medication. They’re not able to understand the drug interactions or the time of the day. They’re supposed to take it, it’s difficult for them to reorder. They don’t know how many refills they have left. So it’s like layer upon layer upon layer of challenge. The good news is we’re learning more every day about how we can empower that individual to understand and manage their medication and do it in a way that reduces stress, reduces time, and helps them live healthier lives.

11:36

So when you explain to me about what this process can be like, it just made me think of what it must be like for someone who is visually and auditorily impaired. That has to be such a blessing to have a company that takes all of these things into account and helps you navigate that day to day process knowing that that’s going to increase your quality of

12:05

life. Absolutely. It’s amazing. We have a dynamic in our company. It’s a living ecosystem. And every time we solve a challenge for a patient, because of their unique set of circumstances, we then learn that we can now say okay, here’s a collection of solutions that we can apply to a similar individual with similar circumstances. Version 1.0 of our business was a collection of ideas that Alex and I reconciled with his research. We’re in the middle of version 2.0. now, and 2.0 is this growing, evolving model based upon experiences that we have with patients’ feedback.The feedback we get from healthcare providers, nonprofit organizations, and support groups, about things we’re doing right and things we’re doing wrong, and ways we can be more accessible, and other solutions we could introduce that would round out the health care experience and provide additional accessibility for our patients and caregivers. To make a long story short, Alex and I were like, there is a big challenge there.

What would it be like if we created from the ground up a pharmacy experience that was tailored towards individuals who are blind?  And so we wrote a business plan based upon creative marketing ideas, Alex’s research, Alex’s experiences as a consumer, my limited knowledge of the healthcare space, and our own experiences as consumers just buying medication, taking medication, providing medication to other people in our house, organizing medication. You know, going through each of these steps and figuring out what are the challenges that an individual who is blind would experience? Can we overcome them?

We wrote a core business plan. We were pre pandemic. So we held some focus groups with individuals who were blind. We were able to get some quality and generous feedback from a lot of the blind organizations that exist in the country: The National Federation for the Blind, The American Council for the Blind, the AFP, the ACB, The Foundation for Fighting Blindness. Alex was doing some research for them. They were very generous with giving us feedback. I guess the biggest picture was that everyone validated that no one was doing what we were proposing. There are a lot of pharmacies that are doing some good things, really creative things. There are some solutions that exist in the marketplace for consumers to do themselves. But no one was really providing an A to Z solution focused on identifying all the different challenges that may exist in medication matters. It validated for us that there’s a need for this in the marketplace. And so we were excited. But then we reached the point where like, all right, Alex is an academic, I’m a business person who wouldn’t know the first thing about medication. Now, what do we do with this really cool business plan that’s been validated by the consumers who we’re trying to connect with?

This was like early 2019. So we spent the next few months trying to research and learn about the pharmacy industry. Learn how the industry works, learn how the dollars work, and try to find a partner or partners who could help us realize the opportunity in the healthcare space. We scheduled meetings and had conversations and basically anyone who would talk to us in the space we tried to speak with. So we met with a mult-billion dollar company. We’ve met with a bunch of mid size and large healthcare systems. We’ve met with individual pharmacists, pharmacy groups. We ultimately pulled in our third business partner, and we met him because I called my personal accountant. I asked, ‘Do you have any clients in the pharmacy space? I’d love to learn how the dollars work and understand the economics of the pharmacy industry. And he was like, I don’t, but my brother-in-law plays golf with this guy. From what I understand he lives in Philly, and I imagine I can get you guys together. That’s the segue into our third business partner, Dr. Jason Becker.’

16:41

Hi, I’m Dawn Prall, creator of MyMacDLife. Thank you for joining us. We could not make this happen without you.

16:52

You definitely set out with some sort of lucky star, but probably because of your fully positive intention to create something that actually served a need,

17:08

and then fix it. We still had our day jobs. I still had my healthcare marketing firm. Alex is actually faculty at West Chester University, which is a college in suburban Philadelphia, where he teaches marketing courses to undergraduates.  So we were like, ‘Hey, let’s keep pushing this along. If we ever get to a point where it makes sense for us to jump in head first who will? So you know, this was about a nine month experience. I’m out knocking on doors meeting with people and trying to figure out if this is a real opportunity we could take to market.

17:44

I love the idea of this sort of initial contact with Alex turning into a weekly coffee with a colleague, because I think that that bond, that merging of two different areas of specialty,  resulted in something special. I can’t imagine how nice it must be to have that type of comprehensive service that takes into account the day to day. Which brings me to my next question. So for someone who’s going to start accessing your services, what is that first point of contact?

18:22

Unlike using the traditional pharmacy experience where that person gets the prescription, or the doctor calls into the pharmacy, and the person goes there and picks it up. Or they go online, and they find some mail order pharmacy, and he gets delivered. We have to have a conversation with the patient. We learned this from Jason, our third business partner. One of the main reasons why we connected with Jason was we hit it off socially. He was as enthusiastic about the concept as we were. He was also in suburban Philadelphia. And he had an existing business model, where he spent the first 25 years of his career focusing on patients with intellectual and cognitive disabilities, who more often than not lived in group homes, whether it be an assisted living facility, an old age home or a group home, where the model was really not one size fits all. We need to understand the individual. What is this person’s cognitive issue? What’s their intellectual issue? Is it deteriorating? Is there a caregiver in their home? Or, are they living in a facility? Are they a caregiver for someone else? Are they also a caregiver for a spouse? What’s their level of sight? What’s their level of vision? How are they currently managing their medications? What ends up happening is that an individual, specifically as someone gets older and they’re getting prescriptions from a multitude of prescribers, may be getting a prescription from their endocrinologist and their ophthalmologist and their general practitioners and their cardiologists, and they’re taking their pomegranate root in their multibuy demand and, you know, they’re vegan.

A combination of those things can create unnecessary and unintended side effects that range from something problematic where a person is experiencing a side effect, or sometimes a combination of those things can impact the body’s ability to absorb those medications and process those medications. Ultimately, they’re not getting the benefit from those medications. Also, the Quick disclaimer, I’m not a healthcare provider, I’m just speaking from the wisdom of the people who speak in our office. So to answer your question specifically, we need to have a conversation with a patient first. It usually starts with a telephone call. Pick up the phone and call us. We have people in our office who get on the phone, both English speaking and Spanish speaking, and actually have a conversation with an individual. We capture basic information: your name, your email address, your mailing address, insurance information we kept when we weren’t with most insurance companies.

We have to learn what their level of eyesight is. How are they currently managing the medication? What kind of challenges do they have managing their medication? Are they involved with managing medication for other people in the household or someone else involved with their medication? Are they comfortable with technology? Because we have a collection of high tech and low tech solutions. Do they still have some level of sight? Can they read a large font label? For example, there are different audio label solutions that can be provided.

We need to understand all of that information first. And then it usually takes us about a day, we will often reach out to the prescribers to get some feedback and we will contact the insurance company to confirm eligibility. We’ll have one of our pharmacists review the medication that that person is taking and identify if there are challenges that exist. Interactions. And we will also find out if someone’s taking Brand X with a copay of 20 dollars. There is a generic option available as well that only has a copay of $5.

So we’ll review all that. And we’ll get back to the patient and help them understand how we can configure everything and if they’re eligible, and then get started. And finally, we also work in a concierge capacity. So we’re the ones who will make the phone calls to the doctors and will make a phone call to the existing pharmacist to get feedback on behalf of the patient. We will call the insurance company to confirm eligibility and confirm that the copays are staying the same. That conversation more often than not happens on the telephone. For patients of ours who are deaf blind, we also have those conversations via text, and email.

22:50

That’s amazing. It sounds like you have everything covered. It comes from the diligence with which you’ve done your research, even from inception. So that’s pretty exciting.

23:14

We’re just scratching the surface. People call us and say, ‘Hey, have you ever tried doing this? We didn’t even know that existed?’ We asked a bunch of people about it and then we slowly started to integrate some of these other solutions into what we’re doing.

23:29

In terms of the follow up, you have a conversation and get it set up? I love that you have that added element of your pharmacist checking about those interactions, because…I know how dangerous that can be. Is there some sort of regular touching base to make sure everything’s ready?

23:56

Well, there are a few things. Obviously, one of the questions we ask the individual when we have that initial conversation is what’s the best way to communicate. It’s all about identifying how they want to communicate, as opposed to saying you have to go to our website, you have to go to our store, you have to call us. Our whole thing is let’s eliminate any barriers to communication and accessibility. We don’t charge anything for our services. There’s no fee. We provide free home delivery, all the support and education we do is free. We provide a whole collection of accessible packaging and accessible labeling. We make our money by being reimbursed by insurance companies to the patient. The copays are the same. Insurance companies actually dictate the copays to us for things that aren’t covered by insurance.

We usually try to advocate on behalf of the patient to the insurance companies to get reimbursed for everything, even things that traditionally hadn’t been reimbursed. Where we are not able to get reimbursed for the patient, we take credit cards and our prices are very affordable. We encourage our patients to try different types of packaging and different combinations of labeling until they find something that works for them. Every person is unique and different. So, assembling a solution for one individual is very different from what it may be for someone else.

25:25

Not only are you providing a specific service in terms of pharmaceutical necessities, but you also seem to be like the middle man for a lot of resources and an additional layer of support. So Andy, could you give me some specific examples for our listeners of interactions you’ve had with people who are receiving your services that have MACD?

25:52

Absolutely, it’s interesting. Obviously we work with anyone who calls us and wants our services, whether they have MACD, blindness. Whatever it is, we will work with everyone. In fact, a great deal of our patients are spouses or children or partners of the individual in a home who has MACD or an issue with their eyes. We want to package and label everything so that everyone in the household can understand what’s behind the medicine cabinet. That being said, our patients range from MACD, which is a very large segment of our patient base.

We have a great deal of patients who are experiencing diabetic retinopathy. Usher Syndrome is a condition that leads to a great deal of deaf blindness. We have a lot of people who are born with eye issues. Obviously our business partner is someone with retinitis pigmentosa. We do get a lot of people in that category. But what’s cool about this stuff is because we have individuals on staff who have macular degeneration, who have retinitis pigmentosa, who have diabetic retinopathy, it gives us credibility to be able to speak to a patient. It also gives us knowledge. So when we’re trying to learn about macular degeneration, we go no further than to the desk of the person in our office who has macular degeneration and ask, ‘Hey, what’s your experience in the marketplace, with the medication, with your eyesight? Give us some understanding, or someone just said this on the phone? We have no idea what they’re talking about. Does this make sense?’ They would say yeah, that’s this, this is this.

One of the main benefits of us employing people with a range of vision issues is that we have insight into macular degeneration into diabetic retinopathy into retinitis pigmentosa, etc. There’s an enormous amount of people with macular degeneration who would benefit from our services. And a lot of groups, specifically healthcare groups and organizations know that if they have a patient who was diagnosed with macular degeneration, who is struggling, they refer them to us. That doesn’t mean we’re a perfect fit with everyone. But we should have the conversation with the person to figure it out. If in fact, we are. Well, listen…

28:03

I am certainly blown away and very happy that you exist. I really appreciate you sharing this information with our listeners because I think you’ve given us invaluable amounts of information in terms of resources, beyond the services that you provide through your company. So for Accessible Pharmacy Services, what would you say to any of our listeners that haven’t reached out to you yet? And are sort of on the fence? Is there anything you’d like to say to them?

28:31

Thank you for asking. Our website is accessiblepharmacy.com. It’s a very screen reader friendly website. It also has large fonts in the event that someone relies on larger fonts. Our phone number is 215-799-9900. You can find us on Be My Eyes and the specialized help section. For anyone who has an iPhone, you can just say Siri, call accessible pharmacy. And depending on the person’s settings, it’ll either put you right through or Siri may say, do you mean accessible pharmacy in Fairless Hills, Pennsylvania? That’s us. I invite you to call us and try us out. By you joining us, not only can we help a patient live a healthier life, you’re contributing to our knowledge base that helps us help other people with macular degeneration with other vision issues. So you are actually part of the solution, in addition to being a beneficiary of the solution. Well, Andy,

29:27

Thank you so much. I probably can’t thank you enough for being so generous with your time and with all of this information. Keep up the good work. It’s amazing. I love your passion. It really comes through about what you’re doing, and how you’re continuing to evolve with the needs of the people you serve in mind. That’s really a beautiful thing.

29:45

Dawn, thank you so much. I really appreciate all your questions. I appreciate the conversation.

29:56

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

30:40

MyMacDLife podcast is generously supported by Regeneron