Equal Eats Equalizers: Thomas Silvera

 

Kyle Dine  

It’s Kyle Dine here from Equal Eats and we're back for another episode of the Equal Eats Equalizers series and I am just thrilled to be joined by Thomas Silvera today who is really not only just an Equalizer in the allergy and free from community, but honestly a hero.  The things that he has done to push things forward that really make an impact on all of our lives are just incredible.  So welcome Thomas, thank you for joining us today.

Thomas Silvera

Thank you for having me, it's a pleasure.  I think we've known each other for so long, and I think we never took the time to actually talk.  It's always like hey, and we're talking about what we're doing very briefly and then we're just pulled away because everybody wants to find out what we're doing next.

Kyle Dine  

That's it and it's really nice to just sit down and connect with you because you move a mile a minute. You have a lot of incredible things going on in your life and they all have not only impact on you and your family, but for our community.  You know our community, we're a bunch of people that want to help and the more that we find opportunities to help the more we take it and the Elijah Alavi Foundation, it's one that many people know of, but some don't.  I would love to hear maybe just an introduction to the organization but most importantly how it started, explain the story behind it.

Thomas Silvera

Absolutely, it's one of the things, although emotional, that I love speaking about is the organization, because it's near and dear to my heart, my family's heart and those who have supported us throughout these years.  About the Elijah Alavi Foundation, we make sure that we put policies and guidance in place to protect children and infants with severe food allergies and even asthma.  So they can have a safe space when their parents drop them off at their daycare center or at school.  

The foundation was created through tragedy, and I say tragedy because of the death of my son Elijah.  We created the foundation because we knew that change needed to happen.  So on November 3 2017, my son Elijah Alavi was at his New York City childcare center where an educator, although they knew about his severe allergies, especially to dairy, fed him a grilled cheese sandwich, which created a situation of my son having an anaphylactic reaction.  But them not aiding in the support of helping him and leaving it up to the wind to see what will happen next, it's one of the things, when I read the story over and over again about how it happened, it's baffling because they had every tool they needed in their facility to save his life.  

So soon after he had passed, we were definitely grief stricken, Dina, Elijah’s mom and myself, we decided whether we're going to just wallow in our grief or do something.  A lot of people call it tragedy to triumph, but it's the triumph it’s there, but we're still grief stricken.  And it's hard, every day I have to wake up and put that one foot down in order to keep moving forward.  And because of my son, my other son Sebastian, who has severe food allergies, and Elijah, I keep putting that foot down and moving forward because something has to change.  And we've been doing that every day since the day after he passed, we've been making sure we can get the word out, create awareness.  We started off small and we’re scaling on a larger scale.

Kyle Dine  

First off, I'm so sorry, and every time I hear Elijah’s story my eyes tear up because it's everybody's worst nightmare.  I've got multiple food allergies myself, and I just think of growing up, of my parents, how much it was their fear and how much you put trust in all of these institutions and people, and there's only so much you control, you don't know what you don't know about how much they're prepared.   For me and my history of allergic reactions there was so many close calls, there's been times I've used epinephrine, there's been times that I've just been really scared of situations, but as I've gone through the system, I don't really remember daycare, but from daycare to school, to high school, to college, and even to the workplace, at every single stage I've discovered gaps in the system.  The fact that you have zeroed in, focused on probably the one gap with the most vulnerable age, of Children and Toddlers at the daycare level, is so valuable because they're the ones that don't have the voice for themselves, they're the ones that don't have that parent reign over them at all times when they probably need it the most.  So, just on a personal level, thank you for tackling this gap.  What challenges, in the very beginning, did you find with that area of trying to influence daycares and safety practices?

Thomas Silvera

The challenges that we've experienced from the very beginning, even to now, is that you have people, especially in the legislative field, who don't see a need for a new guidance or policy.  There are even times, that there are also educators, that are more concerned with the liability aspects  opposed to a life being saved.  So those are the challenges we face along the way.  I think New York was the easiest one, we probably had two oppositions,  but they were on financial aspects, but other than that we've had a good movement with that.  In other states it is getting them to understand that the safety of a child is more important than anything.  I have to sit in meetings with different committees, over weeks of time, for them to get that,  just for them to understand that the importance of a child's life is invaluable.  It's priceless, like you can't put a price on a child's life, you can't, like oh how much is gonna cost this, how much is gonna cost that?  No, it's about saving a life.  

So dealing with a lot of oppositions over time, especially California being the most challenging that I almost killed the bill, I almost decided not to go through with it because I didn't understand why we were having so much pushback on a bill that will protect children.  Sitting in committees and committees with California, literally weeks and weeks on end, two or three meetings at a time for them to understand it.  We have made amendments to work hand in hand with each other.  Even today we're still dealing with some people who oppose the passing of the bill and it baffles me.  You're more concerned of your liability, but your responsibility is to take care of that child as an educator.  I say it all the time, when a parent drops their kids off at school, we want them to instil the same care we would ask a parent who has a child with food allergies, diabetes, celiac, you name it, any ailment or if it's just a regular child, we want them to provide the safety for them.  When we have so much pushback, to the point that I almost decided not to go ahead with the bill, but I said I can't do that, I can't do that because my obligation is to my community.  I need to put something in, I need to keep moving forward because the community that we serve is huge, supportive, their advocacy effort is outstanding.  I’m getting emotional because the pour of so many people, just coming in and wanting to support and lend a hand to push this legislation was like, you know, it's not about the legacy of my son,  it’s about putting policies and guidance in place so that parent who's reaching out to me to tell me about what's happening in their childcare, we need to put in and close that gap.  We need to close that gap and create a bill that's ironclad, where if something happens we have a system that goes in and audits that and makes sure there’s someone who has to be responsible for those incidents.  We can't just sweep it under the rug or just wash our hands with it when a child has an incident, it's a life.  

It's also crazy because when you have these educators also doing their first aid, CPR, AED for childcare, it's the same mindset, you need to save a child's life, so why is there so much opposition?  Yeah, it's another program for them to understand, but this is a job that you took and you are there, and you have responsibilities to the children, it's not for pay day.  So when I work as a surgical technologist my job when I'm assisting the surgeon is to make sure that the patient is protected.  I may assist the surgeon in the surgeries, helping with instrumentation and everything but if the patient is not being served appropriately by the doctor, or anyone there, it is my job, my duty and the oath that I've taken to protect that patient.  Same thing with anyone who's watching a parent's child.  We need to look at that and see this is our responsibility.  It's not about a paycheck.

Kyle Dine  

It's so sad about the resistance that you’ve faced.  It's with anything with change, it seems, and I've encountered this resistance too, even just on an allergy education front, trying to get that message in schools of just awareness, nothing policy wise, but just here's what food allergies are about and how you can help.  For some, it just seems like another thing, it's something that not everybody understands, but we keep pushing forward on.

Just so everyone can understand,  and then I'd love to know about how far this has gone and where it's going next with Elijah’s Law, but can you break it down for us, what are the key components of Elijah’s Law?  What then happens at a daycare in a state where this is implemented?

 

Thomas Silvera

So, one of the things with Elijah’s Law, it's also known as The Childhood Anaphylactic Policy Act, it's one of those crucial pieces of legislation, we want to make sure that it becomes a public health policy.  So it is to close the gap on the educational aspects and awareness.  We want to make sure that their training is not done by American Red Cross or others, I'm not negating these training facilities but having food allergy training is more in depth than just learning how to use an epinephrine.  It's how do you mitigate risk?  How do you avoid cross contamination?  How are you taking heed to understanding may contains or made in a facility, or when in doubt throw it out?  These are the things that we want them to know.  How to read an auto injector, how to feel competent in using an auto injector, we write all this into the bill, and stock epinephrine, we write stock epinephrine into the bill. How can we get the child care facilities to have epinephrine on hand?  Because in secondary school, there's a stock epinephrine bill. We understand that for a lot of states, when it comes to child care, there’s not really anything.  So we write that into a bill, and there's the protections and the liability aspects that we write into it, in terms of like the Good Samaritan Law and so forth and so forth.  It's a very straightforward bill, where when we present this bill, everyone's like, this is a phenomenal bill. The problem is the people who are working, who are unionised, they see that it’s a problem, because now we're leaving the responsibility up to the educators, to protect someone.  So it's a very crucial piece of legislation where we look into every aspect of that state, what's missing?  How can we implement Elijah’s Law into their hometown and get it enacted?  So it's that the bill has to be a bit more legislative based, in terms of the verbiage, but it's that simple.  It's like the educational aspects of it, the awareness aspects, the policies and guidance, how are we going to work in implementing new policies and guidance for these childcare centers because what they currently have are all voluntary guidance?  We want to take away those aspects, mandate something where there is some type of responsibility there, and the epinephrine aspects.  It's like what we did with New York. I don't think a lot of people know that New York is funding an AUVI-Q program for the childcare centers.  New York gets $19.5 million for the AUVI-Q auto injector program.  That's a huge, huge amount of money and it's not just for infant based dosage.  We have infant, we have juniors and we have adult based doses that are going into these childcare centers, because there are children of all different weights and sizes in these childcare facilities.  So that's just the beginning, we're looking to implement that in other states.  But the bill is very straightforward, very simple, but it's a great bill.  And that's why we're working with legislatives in different states to understand, here's what we're doing, it's that simple, let's just close the gap and keep children safe.

Kyle Dine  

It's remarkable, and I couldn't help but think of these three R's as you're going on about all the benefits because with educators, with daycare operators, the alternative is doing nothing.  And faced with a real situation, I don't think anybody would ever, ever in their worst nightmare want that, and to deal with that and be unprepared.  So the fact that you have a program that's helping them recognize or sorry, even before that, reduce the risk overall in a child care facility, and then if something did happen to recognize it, to be aware of what is happening and then to react,  to actually treat a reaction and be part of the solution to help save lives and keep kids safe.  When you break it down on that level, it's hard not to rally around because it's something that's pretty straightforward, simple and makes our society a much better place.  For anybody that's done training on any type of life saving, whether it's using a defibrillator or epilepsy awareness, these are things that people genuinely want to know and help with.  So I think this is a genuinely new condition for a lot of people, they might not have been directly affected by it in their family, but it doesn't mean it doesn't exist and is definitely something that needs to be dealt with.  So Elijah's Law has grown in leaps and bounds from New York City.  Now how many states, which ones is the law in and possibly where's it going?

Thomas Silvera

So far four states, we've had Elijah’s Law in.  New York, Illinois, Virginia, and now California.  In California we're waiting on a signature from Governor Gavin Newsom.  We've been having a lot of call to actions for that, let's get this governor to sign this bill.  

Like I mentioned before, we didn't know the trajectory of how Elijah’s Law would take shape, but Elijah's mom was like, No, we need to go bigger!  There was definitely no going home after that!  Then meeting with Jonathan Carroll back in, I believe it was 2019, he decided to take on the bill.  And he's like, ‘Okay, what's next?’   So every time we get a bill, we're like, okay, what state is next?  What state is next?  What state is next?  

Virginia passed the bill swiftly, the legislative process is different in every state, but I didn't know how fast Virginia passed that bill!  It was like the minute we submitted it, we were having meetings and then okay, the bills passed!  We what?!  We had Pritzker sign for Illinois, Youngkin for Virginia, so we're like, okay, California, let's do this!  With 2.1 million children in California that this bill will be affected by., young children in childcare, we’ve got both the east and west coasts.  

So our eyes are set in other states, we looked at Texas, Texas has a similar bill that was actually being implemented before New York, but we're actually going to reintroduce something in Texas.  It was introduced by someone else that I knew before Elijah’s Law, so we're going to work on Texas.  Florida, a couple other states and Pennsylvania is still in the legislative process.  We're going to be working on Connecticut, Kansas, Michigan, the goal is to take something like this into federal legislation, that's a pretty huge leap, but we're doing it state by state as we talk with others about a national legislation.

Kyle Dine  

Amazing Thomas, you and Dina, everyone at your foundation, you are an unstoppable force of good and on behalf of everyone in the Food Allergy community, thank you for all you do.  I know it's tireless work that you're putting in and a lot of hours, but it's all coming from your heart and it's passionate and it's appreciated.  And for everybody that's watching, I know what they're asking, how can we help?  We want this in our state, how do we push this forward?  What can people do to support your mission?

Thomas Silvera

Absolutely, so one of the great things I don't think many people know, that my foundation and AAFA, we partner up to do research in every state on their policies and guidance, from secondary to childcare.  And we found all the gaps and we created what is now The Elijah’s Law Toolkit.  So this toolkit if you go to www.aafa.org/elijahslaw or you go to www.elijahalavifoundation.org you can find the information on there.  This toolkit literally breaks it down for you, it is the blueprint on how to get Elijah’s Law in your state, it's basically almost foolproof in a sense.  It's how to write a letter to your legislator, who to contact in your state, has my story, it has every state on there, where there are gaps, what needs to be implemented.  So it makes it very simple. So if anyone wants to do that, they go to www.aafa.org/elijahslaw  or to www.elijahalavifoundation.org   You can find the information there and download it, you can download the whole entire toolkit, it's free.

Kyle Dine  

Amazing, that you put those steps together for people.

Thomas Silvera

Yeah, we talked about this toolkit in 2018.  But we finally got it launched early this year in February.  A lot of work went into it, it was a lot of research that went into it.  I was so happy to work on that project because it's something that is passionate about me and it's along the lines of what I've been doing in my career anyway, in terms of academically,  so I'm very grateful for AAFA and also with the training aspect of food allergy we were able to put the training that my foundation and Belay, we were able to write that into the toolkit as well.  And with our training, we're getting it in every state as well.

Kyle Dine  

Unbelievable, and for anybody who might feel intimidated about contacting legislators, maybe that's something you've never done before or been part of that process, this will link to this toolkit in the article and under this video so you can see the toolkit.  

But it is something, that your voice really does matter, whether you've done it before or it's your first time and one of my favorite stories about impacting change in the allergy world was, I think it was New Hampshire, where the restaurant bill that actually passed for food allergy protocols, it was suggested by two teenage girls that had food allergies.  They just wrote a letter to their state legislation.  They asked what stood out to you about this letter from these two teenagers and he said, Well, I get so many standard issues and the fact that a) this is important, this affects lives and b) that it was written by teenagers and I don't ever hear from teenagers. I just put it at the top of my pile and we made it happen.  And that's kind of how it can work. You never know unless you actually do put something in writing and contact.

Thomas Silvera

We have people, we have legislators that are out there, that are willing to help and create change with you.  So it's just a matter of you going to your local elected officials, say hey, I know you probably don't dabble in this, but can you help me get this on the floor.  With New York, they didn't know what food allergies were, they didn’t understand what a food allergy legislation was.  So working with Assemblyman Al Taylor and at the time Senator Brian Benjamin, they were learning throughout the process and were able to create this change and it had helped them just even think on a more grander scale on how to do that.  And that's how you work with your legislator, your voice is powerful to create change, and we need people to go to their elected officials and ask them for the help needed.  The toolkit, it's definitely a blueprint on how to do it.

Kyle Dine  

Amazing and you're essentially handing them a win.  In terms of it looks good on them as an elected politician to help kids in a way that has not existed before in their state that should be there.  So it's a win win.  Thomas, it's so great to connect with you again and hear your story, hear how people can help but most importantly, how it's grown over the last short time and I just hope it all continues and that impact just keeps on snowballing.

Thomas Silvera

It's crazy how much was done in such a short amount of time.  It feels a lot longer but it's not,  so every time we look at the timeline it’s like wow!  If you average it out, we started the foundation but it wasn't official until like September 2018, but we got a bill passed in 2019.  There’s a pandemic, in 2021 we had Illinois and in 2022 we got Virginia and California.  So we had four bills passed in such a short amount of time because it's a great bill and we need something like this.  And we need all the support from the community, from businesses and organizations and partners like you, you make things happen in what you're doing and your support is tremendous.  And we are so humble and appreciative of all you have done for us.

Kyle Dine  

So proud to call you a friend and we're so happy to spread the word to our community and how they can really help because this makes all of our lives so much better and safer.  So, thank you, thanks, Dina for everything you do and just keep on going because it's really appreciated.  So thank you so much, Thomas. It was great to catch up with you.