The Silent Killer: How Mindy Mintz Turned Tragedy into a Life-Saving Mission

[0:00]  when my husband was sick I I bought a magnet and put it on my refrigerator and I keep it there and look at it every day that says um don't ruin tomorrow worry I don't ruin today worrying about tomorrow um because we have to live every day whether you're whether you have cancer or you're just walking down the street and something terrible could happen to you you know we have to Value every single day and that may sound um you know like Rebecca sunshine or something but I I really I really feel like a lot of us spends so much of our energy on angst instead of on Joy and I think that that ultimately has a negative effect on the quality of our life welcome back to another episode

[0:58]  here on the heart and hustle podcast with we speak to leaders in the nonprofit space or those in healthcare and today we got president and CEO I love to have great conversation with these leaders that are really making a difference and a lot of the times it's their their life Journey that L them to this place and Miss Mindy thank you so much for your time she is the president CEO of econ Ean sorry could you let us know a little bit more about um just the organization itself so our organization the esophageal cancer Action Network is focused on advocating for patients at risk for esophageal cancer and it isn't just Pat patients diagnosed with esophageal cancer we're really focused on prevention because I started the organization when I realized my husband was about to die of a disease that I thought was preventable because it had

[1:46]  been caused by acid reflux and what I'm saying to you is not that acid reflux was a symptom I'm saying acid reflux was the cause of the cancer that killed my husband and what I realized is that most people don't know that acid reflux can kill you and you know after my husband passed away even though you know we had two little kids um I just couldn't sleep at night thinking about all the other families that were going to go through what we went through and so um that's why I started the esophageal cancer Action Network I thought that if we let people know that reflux could cause cancer um they would go get an endoscopy they'd be diagnosed and we'd save so many lives and you know nothing is ever as simple as you think it is when you start so I didn't know what didn't know and and we learned a lot of lessons over the years but we have made a

[2:34]  difference you know in any business whether it's a nonprofit space the the health care space you just there's just big challenges you kind of talked about it right that it it wasn't easy what are some of the biggest challenges you've actually faced um early on getting just the word out there yeah so you know it because we're small and and just for perspective um esophageal cancer is responsible for um 1% of the cancer diagnoses in the United States but it's responsible for 2.6% of the cancer deaths so what we were dealing with was a pretty rare cancer that killed almost everybody who got it so there wasn't a Cadre of survivors who wanted to support us and family members like me who were

[3:22]  left behind oftentimes you know that's the worst time of their life they never want to think about it again they don't want to get involved with dealing with the Sagal cancer issues sometimes because they feel like I've had enough of that luckily we did have people who were more like me who said I want to do something about that but it's not 100% so when you're you know you start whittling down how many people you really have for support um it becomes small and the problem is that the Universe of people who are at risk is large you know there are probably more than a million Americans walking around right now with the precursor to a Safa Geo cancer called barit esophagus and they don't know it MH and most of them won't go on to get cancer and and you know thank goodness for that but the ones who

[4:09]  do generally by the time the doctors figure out what's wrong it's too late to do anything to save their lives so that's the sad truth we're dealing with and we're always trying to get the word out and helping people understand the dangers of esophageal cancer the risks of esophageal cancer if you have reflx but also you know it isn't just reflux right reflux causes it but not everybody has reflux symptoms um and so that's that's a harder segment of the population for us to get access to we really try to encourage doctors to become aware but primary care doctors are busy and you know if you tell your doctor you have heartburn they'll likely tell you to get some over-the-counter medicine and that might take care of your symptoms but it

[4:55]  won't take care of your risk it it's such a um a space that like you mentioned is the unknown because as I mentioned to you last time we were we having a conversation it was that I was experiencing the acid reflex for so long right for years actually and um they told me just stop drinking orange juice or stop eating spicy stuff that was just kind of everything I had and when I and when I had this conversation with you and you told me about your husband I'm like oh my God it could have easily been one of those moments where it was just oh just stop doing this and it' be okay but what happened if I wasn't they continued to live on and then here we are still with issues as you mentioned mind getting rid of orange juice or hot food isn't going to prevent this yeah the problem is that the sphincter between your esophagus and your stomach isn't operating properly and so the contents of your stomach are coming up regardless

[5:42]  of what you're eating um they're coming into your esophagus they're changing the lining of your esophagus and when that cellular change starts that's when you're at risk for cancer so people think that if you change your diet then you'll eliminate your risk and that's not how it happens yeah you mentioned to me last time as well um that really stuck with me that this disease is a silent killer why is it often too late and what symptoms should people look out for yeah so that's why we harp so much on Reflux because really there aren't any symptoms of a sappal cancer until the day you can't swallow by and large that's the first time people realize that they're at risk but if you can't swallow that means you have a tumor so big in your esophagus that it's blocking the food from going down and by the time you have

[6:29]  a T tumor that's that big we just don't have the tools to fight it and you know that's a big part of what we do now is advocate for more research funding because so little is known about this disease so we don't have the kind of therapies that are are very effective in a lot of other cancers um but we're working on it we've added more than $20 million to the federal research budget for esophageal cancer research in the past four years and hopefully we'll be able to keep doing it in the future who knows given the landscape in Washington but we're not stopping we're going to keep fighting for that because we think that's the only way we're going to be able to save people you know we focus on prevention but um if someone's diagnosed you don't say well sorry we caught it even if you catch it late this is the thing about

[7:17]  esophageal cancer even if you catch it early stage one you know when you have small tumor hasn't really spread according to the studies survival rate is still only under 50% so it's so critical to catch it before it becomes cancer and and in some ways we have this benefit because there is this precursor condition called Barett esophagus that can be treated and eliminated so that you don't have to go on to get cancer but as I said many people have barretts and don't know it and there is barretts that doesn't lead to cancer thank goodness most barretts doesn't lead to cancer the problem is we're getting closer and closer to being able to figure out who's most at risk and treating those people but people who have no symptoms because barretts

[8:05]  doesn't cause any symptoms um they don't know to even go to get checked and so unfortunately many of the times that it's discovered it's once people can't swallow and by then you know that it's getting better in 2021 they approved a couple of new immunotherapies for us this past year we had another targeted therapy approved there are more drugs in the pipeline and we're seeing gradually that survival rate increase but we're still talking about only one out of five people surviving five years that's not good and is there is this something that it's um all across the board male female or is it no it affects men four times as often as it does women and what's interesting is they haven't found the research that can explain that but you know it's absolutely true no matter what

[8:53]  country you go to um esophageal cancer is far more prevalent in men than women but women get it and and that's part of the problem in terms of um you know prevention with women because a lot of times doctors think you know the The Stereotype had been either because there's two types of esophageal cancer there's one that's generally linked to drinking and smoking and then there's the one that's caused by acid reflux the one that's caused by acid reflux is the one that's most prevalent in the United States and other Western Nations but for many many years doctors just assumed if you thought of esophageal cancer you thought old white guys who smoked and drank and now even those who are aware of esophagal adinal carcinoma for many years thought it was just you know old white guys who had reflux and were fat

[9:41]  and um but it's not just men and so women who they are largely overlooked yeah I I I want to continue to educate our listeners and for those that are actually you know watching or listening right now who has chronic reflex like what steps should they take to be proactive about their health um so one of the things that because it's our na it's our natural incline inclination right to um have a symptom run out and buy something to take care of it right my my mother used to live with a the industrial siiz bottle of Tums next to her bed um and that's how she lived yeah and I think there are a lot of people like that we hear it over and over again among our supporters um and you get rid of the

[10:28]  pain and then you go on because you don't think that reflx is a big deal and in fact you're probably not old enough to remember it but when I was growing up there was a whole series of commercials that made a big joke about it you know I can't believe I ate the whole thing oh that's a spicy meatball there were all this whole series of iconic commercials because they made fun of the idea that this isn't you know this is kind of a joke but it's not a joke it's it's deadly serious um and so that's not part of our culture though most people think that heartburn and reflux are normal go get something to take care of it you'll be fine and for some people that works but if you're one of the Unlucky ones you're probably going to be very unlucky because they aren't going to catch it until it's too late so what we recommend

[11:15]  is if you're having those persistent symptoms talk to your doctor about it especially if you have some of the other um risk factors like if you've had someone in your family who had barit esophagus which is a precursor condition or or or esophageal cancer um as well as uh there's a whole list of things that that you should be looking out for and talking to your doctor about because especially um you know we used to say as people got older they should have an upper endoscopy but we're seeing an increase a tripy in the number of young people diagnosed with this disease in the past several decades and it's very troubling you know the the saddest case I I know of is a 16-year-old boy diagnosed with Stage for esophageal cancer and the treatment was so

[12:02]  punishing that by the time he was um 18 you know he'd gone through some trials he'd taken treatment and he he finally said to his mother I just this isn't living for me I don't want to do this anymore and his poor mother had to watch him die because he didn't you know the pain the treatment was so hard and you that's a heartbreaking story yeah we need to be doing more to make sure that we're catching those cases early and I've been encouraging a lot of the Physicians who care about this stuff to um to bring together not just adult oncologists but maybe some pediatric gastrologists people who can take a look to see if we can catch those kids early um and try to figure out who's more at risk we just don't know right now very tough space right it's something that as You' mentioned has

[12:50]  never been addressed in all these years but it's been happening and people had just kind of whether put a Band-Aid on it or give you know some like I mentioned just milk after you eat spicy or don't drink the orange juice and all these different things but it is a very serious matter as you mentioned about 16-year-old young male right it it there is no there's no uh age preference it's go if it's happening it's happening people have to understand how to how to deal with it and how to catch it so early if you just had one message that you can actually reach millions of people um about this disease what would that message sound like um you know it's the message that we've had on everything that we put out ever since we started the organization it's uh I'm going to pull off my little wristband here says heartburn can cause cancer

[13:39]  and we need to have a mind shift so that we no longer think of heartburn as just the normal thing yeah it's something you just live with because if you've got persistent reflux you should be talking to your doctor about it and hopefully your doctor will take it seriously the one thing that's really great is that you know when we first started telling people heartb can cause cancer and people were going to get endoscopies and the doctor said well you know you don't have enough risk factors for me to send you for an endoscopy because an endoscopy is a sedated procedure it's not without risk and it's expensive and for the person who has it they got to take a day off of work you know it's a hassle yeah what we're lucky today is that there are minimally invasive testing devices one that's on the market already um and it's called the uh esog

[14:28]  guard that you can swallow what's essentially a balloon and they can take some tissue samples right there at the junction of your esophagus and your stomach and send it off for a DNA test and you can find out if you're at risk takes five minutes and you know we've been working with um a lot of the companies because that's not the that's the only one that's on the market today but we expect that over the next couple years there will be more testing devices like that but um unless they're covered by Insurance there's not much value because people can't afford it so we we're really pushing for insurance coverage for this because it's life- saving um you know as I as I said you know most people don't discover this disease until it's too late if we can Discover it

[15:16]  early treat the precursor get rid of the precursor and keep people alive um not only you know I'm when I'm talking to insurance companies not only are you saving lives but you're saving money too because it's expensive to treat esophageal cancer you know one thing that really makes your organization really stand out we spoke about it was the the use of Technology um and Innovation you told us about this um nutrition assistant how does it work and how does it actually help patients so we're really fortunate to have a partnership with a company called saber health and they developed this AI model they call it AA and you know the graphic is this beautiful woman AA she's a part two character really but she AA stands for the intelligent nutrition assistant and 247 anybody with

[16:07]  nutrition issues related to their cancer can send in a message that will be answered by AI using a database of really solid oncological nutrition data and the other piece of it is if they can't get that IM immediate answer through through the bot a real person is going to answer your question within 24 hours so we're really proud that we're able to offer that service to our patients because it's you know you can imagine with esophageal cancer what we haven't discussed is that if you're lucky enough that your disease has not spread you are what they call eligible for an esophagectomy and um I will tell you that when my husband was diagnosed I

[16:55]  almost threw a party when we found out he could have an esophagectomy most people aren't throwing you know a party because they're going to have some radical surgery but really at that point we thought that was the only way he was going to survive but let me tell you what they do they take out your esophagus usually the top of your stomach they take that stomach and pull it up and reattach it to whatever's left of your esophagus up here so yeah how do we supposed to finish this this just sounds oh my God so it is it's radical and that person who has that surgery can never lie flat again because there's nothing keeping that stuff from floating back up there because they no longer have that sphincter that wasn't working well before now they have none so they have to keep their head above you know um at at an angle to the floor because

[17:44]  you're at risk for aspiration pneumonia and i' I've actually seen people I know who have this disease and I think over time you become a little less concerned and maybe you lie flat a couple times and we've lost really amazing people to that that problem and so while they had survived the cancer and they' been able to lead a Rel relatively normal life with the um Asaf ectomy um they were still at risk and so you know there's just it feels like minefields all around and we feel like Our obligation is to make sure people are informed because like my my dream is that we can prevent everybody from having to have an esophagectomy to need to have this treatment that can be so punishing that that we can PR V this before it ever starts but not only do you have this you

[18:32]  you you've also have this clinical trial matching service powered by AI you you really you know AI is that sexy word that people are using but you really are are in it and and this kind of shows um why is it so important for cancer patients and what kind of impact has it really had so our clinical trial matching service is done in partnership with massive bio and they've been our friends for a long time and we were thrilled when they were able to offer this to our patients because if you if you're a person who's been recently diagnosed with cancer um if you were to go to the website it's a little better today than it used to be but you know there's clinical trials.gov where all the clinical trials that are going on in the country are listed actually I think they're probably around the world but as a patient it's really hard to

[19:20]  decipher what those trials um parameters are what you have to do to to be uh qualified and and they're all all over the place so if you have a situation where you're constrained geographically it's also hard so what we've been able to do is um with this AI powered clinical trial matching take the information about the patient which includes biomarkers and that's another thing that we're really you know trying to educate people on they really need to get their biomarkers tested because that's going to decide a lot about what they're going to be eligible for but you take the information about that patient and with AI you configure F out which trials are best for them and our service doesn't just you know do a a robotic here's your match or here's some matches

[20:07]  they hold your hand through the process they help you apply for the clinical trials you know it's it's a difficult process it's not you know it's not like um filling out a form to I don't know I'm trying to think of something that's easy to get but it's it's complicated and it takes time and um and so I feel very fortunate that we were able to partner with massive bio to make that available to patients because it's um I think it's comforting to know that not only are you going to find the right place to go but you're going to get help to get there no I truly do love it and and I know that there's some new diagnostic uh tools available out there but they're just not being widely adopted it looks like yeah what's preventing these doctors from actually using them you know that's a question that we

[20:55]  have too um because we know that there there is a something that they call Watts 3D which is a brush biopsy technique that detects Barett esophagus much much better than the standard forceps biopsy which is what we do and you think about you know it makes sense if you think about it because you the esophagus is a long organ right it's a lot of space to cover and so if you're taking a little piece here and a little piece there you're likely to miss something but if you have a brush you're going to catch it all and so with the Rush biopsy you can get a much better reading of what's actually going on in that esophagus but it's not the way a lot of doctors who are practicing today were trained and you know anytime you introduce something new um generally I

[21:43]  think people are are somewhat resistant and um I've discovered that in the world of gastron neurologists you know it's it's not enough for them to see a study or two that shows it works they want years of studies before they're going to start a adopting something and the problem from my point of view you know I understand that you want to be a gold standard provider but when you're dealing with people at risk for a disease that has as I said and even at stage one less than a 50% survival rate shouldn't we be able to kind of push this forward a little faster because we can save more lives that way you're using so much AI is is it something that you uh like if you could really think about another AI tool maybe to help communicate um to donors uh maybe the

[22:32]  community maybe your clients if you can actually integrate AI tool what does that actually look like for you so it's interesting you mentioned this because I uh I've been working on a project to um you know our website is full of very very valuable information for patients and the whole Community but from my point of view if you you'll find what you're looking for if you have a pick and an axe it's not easy to access it and so we're working on trying to streamline that but as I was talking to our web designer he said you know mindi I could probably if you're willing to scan every bit of information on your site we can create a basically a chat box where people can enter a question that can be answered by AI based on all of the information that's on our site so

[23:20]  if they had one question you based on what we already have on our site they'd be able to come up with an answer so I'm hoping we'll be able to implement that at some point yeah yeah no for sure I I definitely think that uh it's probably closer than you think personally no no he can do it tomorrow if we can if we can get the funding and I can get the time I mean that's I just I'm excited that it's possible and um and it really I think will make everything that we have available there um much more valuable and much more accessible absolutely and and to just educate people right like just the conversation I had with you the first time and even this time I'm just learning Mindy about something that I even know existed that was a problem in this world yeah but you're and and as a male it's kind of scary especially when I told you a little bit of I it was just

[24:07]  something that I was dealing with and I just thought it was just normal and then they made it even more normal when they said just don't do this right but no it's actually it could be even more painful than that you know and and obviously you've kind of experienced it firsthand if you can kind of go back into those early days of this organization because you know sometimes we just do things and we forget to kind of go back and and think about these things but if you can go back to the early days of this organization and give yourself advice what would you say to yourself well can I tell you a story do we have a few minutes for a story when we first started Ean you know I told you my goal was to make sure everyone knew that they were at risk if they had reflux but we wanted to make a difference we weren't exactly sure how we wanted to educate people we wanted to make sure there was more research we were fortunate that just as we got started

[24:56]  the National Cancer Institute was stared its um project to map The genome of cancers called the cancer genome Atlas they had 20 cancers on the list and esophageal cancer was not one of them and at that time esophago adoc carcinoma the most prevalent type in this country was the number one fastest increase in cancer in America and so you know I went down and banged on some tables and said how can we not be on your list we're the number one increase in cancer and you know they said oh we can't get the tissue samples so I went back to the doctors on my board I said can we get them their tissue samples and they were probably so we went back and said we'll get the tissue samples they said well that's nice but we don't have the money and you know at that point I'm working full-time for free we have $40,000 in the bank and I said well wait a minute how much do you need to start this and

[25:43]  they said we need half a million and you know my board was like well you know we have no money we don't have half a million I said yes but you know what I know that there are some very wealthy people who've been affected by this disease who if we knocked on their door and said NCI will do this really incredible research if you will fund it that we could probably raise that money half a million dollars is not a lot of money in the world to us it was a lot of money but in the world it was not a lot of money and so our board had a very intense discussion and agreed to send a letter to NCI saying we'll raise the money if you'll put us in the project and um we sent the letter and about six weeks later I get a call from one of the researchers who was working on another piece of that project and said you're going to get an invitation to participate in the disease working group the esophageal cancer pilot project of

[26:31]  tcga and I was so excited I'm jumping up and down when do we have to raise the money and he said I don't think you do and I said how's that possible and he said well I think you shamed them into finding it in their budget I don't care how we did it you know the fact that we were there really mattered to me because my view was you know esophageal cancer had been so ignored I felt like genomic mapping I think is the train leaving the station and if we're not on that train we are once again left in the dust mhm but I didn't really know what it was going to lead to and it did take a long time to get the tissue samples and the study wasn't published until 2017 it's you know the the project started in 2011 wasn't published till 2017 but when it was they discovered that esophageal cancer and esophageal adinal carcinoma

[27:21]  and gastric cancer were very similar and that meant that a lot of our patients ended up in clinical trials that were already slated for gastric cancer especially for immunotherapies and so in 2021 two immunotherapies were approved for esophageal cancer patients and I'm going to be honest with you Eon I didn't put this together I was interviewing the principal investigator of one of those studies and she said you know Mindy if you hadn't gotten us into the tcga we wouldn't be here and I said and then I started thinking about it she goes if you hadn't gotten us into tcga your patients wouldn't have been in the study H and that was an aha moment for me and I'm going to say this you know yes are we proud that we made that happen sure we are but that's not why I tell the story I tell the story because

[28:08]  I I really want to encourage people I don't care what you're doing the day you start to think I can't make a difference it's just not true yeah people can make a difference even teeny tiny little organizations with $40,000 in the bank can make a difference it can save people's lives and that's exactly what I took out of that story that you showed up you were persistent you knew what you wanted you knew that you were been um impacted so you said I'm not stopping this fight and it if you just show up if you just stay consistent and persistent doors would open that you don't even know we there yeah we had no idea this was possible and and I'll be honest with you you know probably when

[28:55]  people talk about our organization when they say Relentless I'm that's when I'm most proud but it's not easy to stay Relentless because you're swimming against the tide a lot of the time you know I talked to one of the gastroenterologist who was at um one of the early conferences um and I consider him a friend now and a big supporter of Ean but we talked about the early days and he said you know in the beginning when I first met you I thought well you're going to eat the elephant one bite at a time he he said I didn't think you could make it and he said but here we are I love it I love it I love it yeah yes listen so to those that uh for people who have lost a loved one to this cancer or for those that are currently fighting what can they do to actually continue to help drive this change the same way you've driven it for so many years so we work really hard to provide

[29:44]  tools for those type of people who want to be involved April is a esophageal cancer awareness month we started that back in 2009 and so we have a lot of tools on our website for you to raise awareness if it's nothing even as simp simple as putting a yard sign in front of your house that says heartburn can cause cancer with a link to our patient guide that explains how that works to um getting a proclamation from your Governor getting buildings to light up in Periwinkle we do a textto day service so we'll send you a clip that you can share on your social media every single day of April um we we try to provide as many tools as we can so that people can raise awareness and we don't just do it in April I always say every month is a esophageal cancer awareness month to me but you know this is this is the month that's been designated the other thing that you can do because and it's really

[30:31]  critical right now is we have a an advocacy tool on our website where you can go in just put your address in and you will automatically be able to send a message to your elected representatives in Congress to let them know that medical research for esophageal cancer really matters to you we are in a critical time right now with regard to medical research and we feel like if if the voices of patients and people who care about are not heard we're not going to be able to make the kind of progress we've seen progress in the last few years that's been really great but I feel like the breaks are being put on and we really need to make sure that that's not what happens going forward we're coming to an end here but I would love to give you the uh the time to really give any final thoughts or

[31:20]  words of encouragement before we get to the blind question for people that are facing I love this these blind questions by the way but for those that are facing fa in health challenges or loss what are your final thoughts or words from someone that has experienced it um by the loss of her her loved one her husband her forever soulmate and then still fighting this battle all this time what are what are those words of encouragement for people that are facing in in this situation when my husband was sick I I bought a magnet and put it on my refrigerator and I keep it there and look at it every day that says um don't ruin tomorrow worrying don't ruin today worrying about tomorrow um because we have to live every day yeah whether you're whether you have cancer or you're just walking down the street and something terrible

[32:06]  could happen to you you know we have to Value every single day and that may sound um you know like Rebecca sunshine or something but I I really I really feel like a lot of us spend so much of our energy on angst instead of on Joy and I think that that ultimately has a negative effect on the quality right life I want to say thank you so much Mindy it it definitely has been a pleasure just educating myself right but we not only educating myself but we've been educating everyone that is actually listening that may had that heartburn and just thought it was nothing and they wanted to take a t about it but really take it serious because it could be the difference between life or death um you know so definitely thank you for the time and and I every leader you know we we we end

[32:53]  every conversation with a blind question from one leader to another another you never know what leader it was but they had this question for you if you woke up tomorrow and your organization had unlimited funding and resources that's crazy by the way every barrier you face was removed what was the what was the first bold move you'll make to change the landscape of awareness and treatment if we have unlimited resources and funding don't forget the funding part I'm honestly I think I would be launching a huge multi-million dollar awareness campaign to make people aware not only about the link between reflux and cancer but also some of the other risk factors that you know the things

[33:41]  that put people at risk for this disease so that this is not a disease that nobody knows about you know we did a poll in 2017 that found that only 14% of Americans know that reflux can lead to cancer so I would put my energies and my resources in into raising awareness in any possible way I could in that regard I love it and you know as I sit here and think about it before we end really quick Mindy is that you told me you did TV and and you did radio and I feel like all that sometimes we do things in life and we don't know how that every kind of plays back but it's it's these conversations right is how you able to earlier you told me you like to share stories you like to tell stories and um because of that early part of your life you do so well at this level of your life and it's only just

[34:29]  growing so again just just truly I want to say um thank you for your time for being here um we'll go ahead and and and wrap this up again I we can go on forever but many this has been a credible conversation thank you for your time your passion for sharing your story today for everyone listening be sure that you guys actually visit ec.org okay e.org to learn more spread aw awareness and support the fight against this cancer that a lot of people don't even know especially if you're ma we we learned some statistics today with Miss Mindy and if you felt that this conversation really resonated with you please make sure that you guys share this episode so we can continue to just make the movement um in in honor of am mindi her husband and everyone else that's battling this cancer thank you guys so much we're going to continue to save lives it's been a pleasure my name is ephra hard and hustle podcast we'll

[35:18]  catch you guys on the next one later