Kari, my friend, we are so thrilled to have you join us for this Insta Live.
I think that the work that you’re doing at Spokin is unique and has such a great impact for others, so I’m honored and blessed to be here today.
You’ve accomplished so much and you are also a mother which I know is so important to you, how many kids do you have?
I have 5 kids. I love being a mom. That’s my number one title that I’m so proud of. I also really love being a pediatrician. I love taking care of kids. I also treat adults, so the book is for all ages and for anyone with or without a food allergy. I wanted to make sure in the book that we got that message out there. This is not easy to live with and I want to let people know we have compassion around that.
Starting with the title, can you explain what that means to you?
Sloan Barnett (a food allergy parent) is also a co-author. I wanted to make sure I incorporated the voice of a parent. So when Sloan and I wrote this book, we thought what is a catchy title and why are we writing this? We want to get the message out there that there’s science that’s been done in the last 10 years that delivers on the hope and promise of that science. Last year the first drug got approved by the FDA for peanut allergy. That really served as the catalyst by which we were able to put a title together that said “The End of Food Allergy,” because this is the first-ever drug approved by the FDA. We all were waiting, especially patients and families were always asking me “when are we going to get a drug approved? When is this going to be real?” Now it is real, and the end of food allergy is in sight. There are people with multiple food allergies and we really need to hone in on that next and make sure there are drugs approved by the FDA. I really do believe we are getting to the beginning of the end of food allergies.
What was your goal of the book? Because you really do cover a lot of topics. Who is this book for?
The book is for people with and without allergies. It’s for everyone. I really wanted to make sure with Sloan that this book was accessible and fun to read and gives a lot of voices of patients and families. I wanted to make sure that the goal of the book was the following: that it was fun and easy to read but also provided a message on science that we know so far and that we have strong facts. Throughout the book, there’s a little summary at the end of each chapter, so even if you don’t have time to read the whole chapter, just read the summary. It’s a how-to book providing real data, real facts, because a lot of the time, there’s a lot of confusion around food allergy. What’s a food allergy and what’s a food sensitivity? What’s the science that I know that’s true and what’s the science that’s not so true? And how can I really embrace that? It’s hard to talk to your doctor for hours. The doctors don’t have that time. With a book, so you can spend time digesting it. The other thing about the book that we wanted to make sure came through was the message of prevention, that it’s possible to prevent and we now have a how-to as to how to prevent. The other message was this isn’t going away, we have to figure out how to treat it and one size doesn’t fit all. A lot of people have beyond just peanut allergy, both adults and children. It’s not just a childhood disease, we know that there are many adults with this disease now and we want to make sure that we are helpful to you. The last thing we talk about a lot is how do you ask your doctor about some of the myths that are out there in food allergy and how do we make sure we debunk those myths? I want to make sure the book and the web site connects people to other people, like we’re doing on Instagram, like you’re doing with Spokin.
Can it ever be too late? Can you ever be too old for treatment like OIT?
All of this is to help our immune system stop thinking this food is foreign and it needs to make this horrible response. It should be natural and we should eat these things without fear.
In clinical trials at Stanford, my oldest patient was 99 and she had a terrible shrimp allergy. We desensitized her. We gave her small amounts of the shrimp over time and now she’s fine. She’s 100 and she’s doing great. She really wanted to do this. She didn’t want to deal with shrimp allergy anymore. I do believe it’s possible to do this for any age. There are some people who say it’s better in young children. That’s just because we have a lot of data in young children. We’ve treated over 100 adults in our center and they’ve all been able to achieve higher doses.
A lot of people before they start immunotherapy, they ask “is this going to be worth it?” Once you finish immunotherapy, the rate of accidental exposures goes way down compared to before you started immunotherapy. While you’re doing the therapy, it can be hard. You have to work with trained individuals. Ask questions. Make sure that it’s the right thing for you. But age will not be a factor. While you’re having immunotherapy, you can have reactions, which is why it’s important to work with someone who knows how to deal with those reactions, but you will get there. When people say “is it worth it?” I’ll say talk to other patients who have done it. We talk about that in the book. In general, everyone that’s finished, they feel they have a much better quality of life. Quality of life questionnaires show much improvement over time. I know each person is different but to me, if it’s the one option to give peace of mind in the end, it’s worth it.
What does it look like when you’re going through it, what can you expect during the process of the treatment and what does it look like after? What’s the goal for that quality of life?
I always ask my patients what their goals are. If you want to get up to an accidental ingestion of food, that’s where we are going to get you. If you want to go beyond that, then we can talk about that too. People like Steve Carell and Nancy Carell and their daughter, I asked the same question and especially with a milk allergy! We take so much for granted. I’ve tried to go dairy free and egg free and to live the life of my patients and it’s hard. You manage their expectations because I said, “I can’t promise you a cure. I don’t know if your daughter is going to be at 100 years old and not allergic to milk. I know though that if you do this program, and you stay on a little bit of dairy every day for the rest of your life, you will be able to have that good immune strength to fight the allergy.” In the book, you can see some of the families that went through it.
Are there really people who are at the point that they were allergic to dairy and they’re eating ice cream?
Everyone has that opportunity. Oftentimes in clinical trials you call someone “refractory” and they weren’t able to get to the end of the clinical trial. Well that may be a 6-month clinical trial. Everyone has this amazing immune system that’s like a rubber band and you can train it and train it, like an immune muscle. You build up your immune muscle and you train on higher and higher weights. Any one person that might take longer to do or might be easy. Each person is different. We usually say we’d like to get up to 300 milligrams of protein because that’s equivalent to an accidental ingestion. There’s patients that say “I want to eat a Reese’s peanut butter cup” or “I want to eat cashew butter” or “I want to have a whole piece of pizza!” We say okay, but then we need to gain your weights, gain your strength to go up to that. But it’s all possible because of the brilliance of the immune system.
So it doesn’t matter what your allergens are, the immune system has the ability to essentially be trained?
Exactly. It’s the way the immune system is wired and it can build itself up and it has to be done every day, not every week. So you train it to go up to a certain level and you can drop down that level later on, but you’ve got to do it with a good team. For people that are interested, I hope you read the book. And please go on our website and you can see Spokin and other places around the country doing work as well as our clinical trials at Stanford.
Is there anything since the time the book was published that’s important to share?
Since a year ago, there are four new companies that have been created around food allergy therapy. There’s three new companies for food allergy diagnostics. One company is called IgGenix and it has a new molecule that can inhibit the reaction completely. There’s a company called Alladapt that has a product that will be immunotherapy for all foods. There’s also many companies that have come out on prevention. Since last year, there’s a lot more guidelines on how to prevent food allergies and diversify the diet. Lastly, peanut vaccines now that have come forward for the FDA. The FDA has been fantastic at getting drug approvals through and there’s been a new breakthrough designation for Xolair.
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The Sean N. Parker Center for Allergy and Asthma Research at Stanford University is the first center of its kind, aimed to find better treatments for children and adults with allergies and asthma. Led by Dr. Nadeau, their research is focused on understanding the mechanisms of the immune system and the dysfunctions of which results in allergic reactions.
