Beyond Celiac Chief Scientist and Strategy Officer Talks COVID-19

March 25, 2020

Transcript of the video:

Hello, everyone. I’m Salvo Alesci and I’m the Chief Scientist and Strategy Officer at Beyond Celiac. Today I would like to take a few minutes of your time to introduce myself and share with you some thoughts around what I’m sure is in everyone’s mind, the COVID-19 pandemic. Beyond Celiac, our organization since the very beginning, in fact, since before this was identified as a pandemic, has acted in support of the celiac disease patient community and their family with a particular focus on three priorities. Do our best to keep you healthy, informed and engage.

Let me share with you a few thoughts about each of these priorities starting with staying healthy. When I talk about being healthy, I refer to the overall well-being, physical health and mental health combined. There is no question that this is a very challenging situation, and I would just say in a way unprecedented. We are dealing with an invisible threat. One that becomes visible actually only when you get sick. We are dealing with something that we don’t know too much about it, so scary for most.

We feel like very often we are in the dark, and then, of course, generate a tremendous amount of uncertainty, anxiety, and of course, that goes on top of some of the panic that is being generated, and I think if you ask me, the panic is the worst thing that can happen in a situation like this, although it’s, of course, hard to keep rational thoughts, and thinking, in general, straight in a situation like this.

Having that said, there are a few things that perhaps we tend to almost isolate from our thinking that provide a little bit of a better outlook, especially if we compare how we may be dealing with a situation like this now, as opposed to even 20, 30 years ago, thinking about the science and technology tool that we have at our disposal, I can’t think of any larger or smaller biopharmaceutical company, diagnostic company, research organization, including government research that is not allocating substantial resources either to improve or accelerate the diagnosis of the disease or development of a treatment of the disease. There has been progress being made. Just a few days ago, we heard that the FDA approved diagnostic tests, which allows to get a readout of the diagnosis much faster than before. Still we can do better. I know there are efforts to develop an even faster diagnostic tool and maybe that can be more scalable and also affordable, so that we can deal with one of the challenges that we are facing, which is how we really try to identify those that have the virus and perhaps are asymptomatic and may spread it to others without knowing.

There has been progress also on the therapeutic side. You must have heard that there are drugs that have been used for other medical conditions to treat malaria or to treat some bacteria infection or even the flu. These medications in countries like Japan and others are currently being tested in clinical trials to make sure that- to see actually if they are first of all safe, but also effective perhaps in at least counteracting the COVID-19 infection to some extent. Some of the preliminary results seem promising, but of course, we need to make sure that these data are confirmed.

Then of course, I see there’s some new treatment that affects the immune system like monoclonal antibodies or also a purified plasma-derived product. These are products that are derived from plasma of sick patients being purified and used almost as a weapon, against people that just get the disease again, product purified from plasma patients that are healed, as well of course vaccines, this will take a little bit longer to have them. There are a lot of efforts in place. Let me tell you, as somebody that has worked in the biopharmaceutical sector and looking at the amount of resources being put and the collaboration between all the players, including regulators, the FDA, I remain optimistic that within a few months, we may have some therapeutic options.

I think this leads me to go back to the issue of staying healthy and how to keep healthy. Again I mentioned before, when I talk about health, I like to refer more like well-being, physical and mental health. One of the challenges that we are facing right now is that we tend to be in a situation where it becomes a little bit challenging to stay healthy. We are stuck at home. We have a lot of time. On one end, sometimes our health choices in terms of eating might not be as good. Sometimes just because we may not find the food that we want, I know this has been a challenge, particularly for patients with celiac disease. This is the time where it becomes even more important for you to keep a healthy- not just a gluten-free, strictly gluten-free diet, but also a healthy diet. That’s important because I think a healthy diet is one of the ways to keep your immune system healthy.

Another way to keep your immune system healthy is by exercising regularly. Again, even this has been a challenge where fitness clubs are closed, that has been a challenge for myself as well. Not everyone has a gym at home or is used to exercise at home. At the same time, there are so many apps that you have on your phone and all the things that you can do to exercise, so no excuses, it’s very important.

Of course, the issue of mental health, no question that the current situation has raised levels of anxiety among the general population, but that may be particularly true also among patients with celiac disease. We know that there is increasing evidence that, in addition to the gastrointestinal symptoms, there are a series of symptoms not related to gastrointestinal manifestation, and particularly, what I call psycho-neurological symptoms, and anxiety seems more prevalent. Again, this data needs to be confirmed, there is more research needed. Observations show that particularly in the younger population with celiac disease, there is a higher level of anxiety. In a situation like this, it becomes even more of a priority, important for patients with celiac to find a way to manage the anxiety through practicing meditation for example. I know it’s hard, but perhaps being kind of forced, confined in your house, you become more incentivized to find ways to meditate, practicing yoga and other activities that can help lowering your anxiety level down, controlling your- focusing really on what you can control.

I would just say, a good way is also not just practicing social distancing, but sometimes practicing social media distancing, particularly, we’re constantly bombarded by news. It’s good sometimes to just take a pause and disconnect and find time to do a little bit of self-focusing. I was reading actually a great quote, I don’t remember where, but something I want to share, it said, “If you can go outside, try to go inside.” I think it really illustrates something you can do at this moment.

I also want to make another reflection. We got a lot of questions concerning patients with celiac disease, perhaps being at more risk because of the immune condition, a lot of confusion between autoimmune and immune depression, two very different things. Again I’m not going to go into that, it has been addressed by my colleagues in another video. Also we have a very detailed Q&A.

One reflection I was making is that in a way patients with celiac disease are under a constant threat. That threat is not COVID-19, it’s gluten contamination. I would think that by the nature of the disease, the patients, the people with celiac disease- I like the word ‘people’ better than ‘patient’ really, they have almost a natural tendency to be extra careful in a number of choices that they make, of course, food choices.

I would ask you to apply the same mindset that you do in being careful with your food choices to prevent the threat of being glutened to the choices that you make right now that can help you prevent being affected. With all the things that we’re hearing and we know from washing your hands for an appropriate length of time in a careful way, to practicing social distancing, avoiding crowded space, again, I don’t need to repeat this. I’d like to think and almost instill this thought in you that, you as a celiac disease patient are naturally more resilient and can apply the same kind of mindset that is part of your daily life to the current situation, which would reduce your risk of being exposed to the virus and getting infected with the disease. The important point that comes with that is also the following, hopefully, you will not- none of you, none of us will get infected, particularly in a severe way. If that happened, what you want to do is to stay as far away as possible. So that by the time- again, if and hopefully will not happen, there are at least some therapeutic options available.

Switching gears a little bit, I talked about keeping healthy, as helping you do this is a priority, someone is keeping you informed. The science team and I, we spent quite a bit of time going out and just focusing on filtering information to try to share with you in a way that is both simple, comprehensive, and accurate, and perhaps as important, and as we mentioned on our website, evidence-based. We are really looking for evidence-based information.

One of the strengths I think we have now and is helping you in a way, coping with the situation is that the flow of information is amazing. We can get real information by the hour. Unfortunately, in most cases, this information, again, as I mentioned, help create anxiety and so on. We can constantly follow the new development. However, the quality of the information is not consistent, and this happens all the time. It becomes very important to make sure that you’re able to distinguish what is called fake news, it may be unintended bad news or partially good news from real news.

Again, we are doing our best to be careful in this space, but we see this as a dialog. We may miss some bad news, or fake news, or even some good news. You’re very active, and as I’m learning, a very educated patient population and people population, please, feel free to always reach out to us if there are things particular that you find controversial or unclear. We really want to make sure that you have the most updated information, but also the most accurate at any time. We are trying again on a daily basis to provide information in various formats through all the different channels that we have. This also leads me to the last point I wanted to make today and prioritize which is to stay engaged. I mentioned before, it’s obvious to all, part of the challenge that we are facing now, we feel a little bit limited in our freedom, right? We can’t congregate as much as we want with our friends physically, but that doesn’t mean we can’t continue to engage with each other and in fact, again, the beauty of technology allows us to do things like what I’m doing. Still, stay here in front of my phone and very soon have my message shared with the entire community.

In the face of the challenge that we are living together, I see this as a great opportunity. Certainly, I see this as a great opportunity for our organization, to not just stay connected with you, but almost to build up what I call a digital community. Hopefully, this actually is something that we can continue to keep and expand beyond this crisis as a way to really work together towards our common goal, which is ultimately to find a cure, accelerate finding a cure for celiac disease, let’s not forget that. Certainly, we don’t forget that at all. Even in a challenging time like this, we continue to pursue that as our primary goal.

Where I’m going with this is that in addition to sharing information that becomes available by third-party, others, we think it’s very important at this time to collect information, to have that interaction with you that will allow us to get a better understanding of what we are going through. Again, I’m not talking just about information that we may want to collect if you get sick, hopefully not, but of course, it would be important for us to figure it out appropriately, whatever you can share, but also how you feel right now.

Again, I was talking about anxieties, your anxiety level going up, how you’re coping with that, or even simply how this pandemic is changing the way you eat. Is it harder to find gluten-free food, has been so much harder, has been harder for you with the closure of the restaurant, or maybe it doesn’t matter because you are not going to a restaurant in the first place? Things like this that may look not a big deal, I think can help us a lot understanding more the disease and helping with the research that we constantly are conducting. I would hope that many of you here are familiar with the tool that we have. It’s called Go Beyond Celiac, again, go.beyondceliac.org, this is a database, a registry repository, whatever you want to call it. This is like a digital tool, accessible both through our website but also through mobile phone. We have an app for both Android and iPhone, Apple. It’s a tool that allows to interact, collect information, and also allow you to constantly provide updates on different parameters related to your disease at various levels.

I think it’s the best contribution that you can do, particularly during this time, where I’m sure a number of you are bored in front of their computer. There are probably as many emails and video games or movies, Netflix that you can watch, but it would be a great service that you do to yourself, to the disease and for our us as we help you. If you could just take a look at the registry and if you like what you see, contribute to it.

Register, we already have a few thousand people with celiac disease that have registered and some of which actually also follow up on some of the services that we have. As a matter of fact, very soon we have a plan to deploy at least one survey, maybe more than one, for the current situation. Again, to just have a better understanding of the interplay between COVID-19 disease, and celiac. Hopefully, this data can help us not just understand the current situation, but overall the challenge of the disease.

Hopefully, I didn’t bother you with these thoughts, but rather I provided something that can help you as you cope like us with these new situations and I hope to also be more present with you through other videos in the near future, maybe some on specific topics. Again, if there is something particular you would like for me to speak on, feel free to make suggestions. Again, one last reflection I want to do, I think I like to, again, keep an optimistic view of the situation. I’m an optimist by nature. Also, as a physician-scientist, I have to be optimistic about the fact that we’re not going to be put down by a virus, otherwise, I wouldn’t choose to do this profession. Eventually, we’re going to win and prevail, but also I’m a strong believer in learning and there is a great amount of learning that I’ve seen here that, again, at Beyond Celiac as an organization, we want to borrow, and it’s that when a situation becomes an emergency, you see pretty much everyone mobilizing resources around it to try to find a solution.

I like to think that once this threat is passed, we may think about celiac the same way. Celiac may not look like a threat to most people, I’m sure it is to each one of you and we should approach with the same momentum, with the same intensity, with the same deployment of resources as we are approaching the current threat. Now, this is a little bit aspirational, but personally, I can give you my commitment that as we continue to partner with various organization and together we pass through these dark days, I will do my best to make sure that the same sense of urgency that we are facing in addressing the current challenge, at least to some extent, is applied to finding a cure for celiac disease.

Thank you for listening to me and I look forward to speaking with you again virtually, and meeting with you again virtually in the near future.

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