Parent Perspectives: Making Alopecia Areata Treatment Decisions for and With Your Child

LISA ANDERSON, PHD:

(00:56)
Welcome to the National Alopecia Areata Foundation's webinar, Parent Perspectives, Making Alopecia Areata Treatment Decisions for and with your child. Joining us for our panel discussion today are Dr. Cindy Baker, Jeff Bellanger, Danielle Quarles, Ruth Rama-Witt and dermatologist Dr. Britt Craiglow. And I'm Lisa Anderson, Vice President of Research and Education for NAAF.

Before we start the webinar, I'd like to cover a few housekeeping details. We have disabled chat for this webinar session. Please post questions for our speakers in the Q &A section. Please keep your questions general for the benefit of all audience members. This webinar is being recorded. All registrants will receive a link to the recording via email. And finally, please share your feedback with us. At the conclusion of the webinar, a link to a short survey will pop up in your browser window.

Please complete the survey there. We do use your input to plan future webinars. Note that live captioning is available for this webinar. To turn on the captions, click the CC slash show captions button on the Zoom toolbar. Captions will appear automatically at the bottom of your screen.

This webinar is part of NAAF's You Are Not Alone education and empowerment webinar series. NAAF gratefully acknowledges the support provided for this webinar series by our partners, Pfizer, and Sun Pharma.

Before we get started, I'd like to tell you a bit about NAAF and our mission. The National Alopecia Areata Foundation is the leading advocacy organization for alopecia areata. NAAF's mission is to drive research to find a cure and accessible treatments for alopecia areata, support those impacted, and educate the public about the disease. NAAF's vision is an empowered community with a choice to embrace or live free of alopecia areata.

To learn more about NAAF's support resources and research and advocacy activities, or to join us as an advocate or supporter, please visit our website at naf.org.

We know it can be confusing to hear all the terms used to talk about alopecia areata, patchy, diffuse, opheicis, totalis, universalis, mild, moderate, severe disease. The NAAF team wants you to know that even though there are many words used, they all refer to one disease, the autoimmune disease, alopecia areata. And that's what we are here to talk about today.

And now onto today's webinar, parent perspectives, making alopecia areata treatment decisions for and with your child. We have a great panel of parents joining us. Before I let them tell you about themselves and their families, I want to introduce you to Dr. Britt Craiglow, who is also on the panel. You may know Dr. Craiglow for other webinars she's done for NAAF on pediatric alopecia areata. She is double board certified in dermatology and pediatric dermatology.

Dr. Craiglow sees patients in private practice in Connecticut and also holds an appointment at the Yale School of Medicine as adjunct associate professor of dermatology. Dr. Craiglow is a pioneer in the use of JAK inhibitors for the treatment of alopecia areata. So we're very grateful to have her here tonight. To kick us off, Dr. Craiglow will give us an overview of the JAK inhibitors that are gonna come up in tonight's discussion. So Dr. Craiglow, thanks again for being here.

BRITT CRAIGLOW, MD (04:29)
Thank you. And thanks to all the parents for joining. I think this is a really cool opportunity. Hi, everybody who's listening. I noticed a few parents of my patients. So a special hi to you guys. So I'm not going to probably talk much here, but I wanted to just give a little overview of the drugs that you may hear the names of on this webinar or in your Facebook group or from your doctor or other know, other parents, et cetera, because I think it sometimes is a little confusing. there are when when a medicine in order for a medicine to sort of come to market for a disease, it has to be studied in really rigorous clinical trials in a certain population. And then eventually, you know, depending on the outcome, it gets approved or not by the FDA. OK, so we now amazingly have three drugs that are FDA approved for severe alopecia areata. So the first one was Olumiant then we have Litfulo and Leqselvi And you can see in parentheses, those are the generic names. So if you see a talk, maybe not necessarily associated with NAAF, when we give talks, we always use the generic names. So there's like so many names floating around, with your doctor, you'll hear Olumiant, Litfulo, Leqselvi. So Olumiant and Leqselvi are approved currently for patients 18 and over.

And Litfulo is approved for ages 12 and over. So this means that if you are 18, you would be on label for Olumiant or Leqselvi or Litfulo if you were prescribed that medication. So just when I give lectures, say off label doesn't necessarily mean off limits, but off label is often trickier. ⁓ So off label, means using a medication in a person that's part of a, basically a population for which the drug hasn't exactly been studied. So, Olumiant it could be someone with severe alopecia areata who is 15. We may see an approval for Olumiant, hopefully next year, down to age 12, but right now, if you're not 18 and over, even though you have alopecia areata, it's considered off-label.

So the JAK inhibitors, so it's just age for those first three that are actually approved for alopecia areata. The other JAK inhibitors that you might hear names of are Xeljanz, Rinvoq Jakafi and Cibinqo So Xeljanz is a very, it was the first medicine that we really used in alopecia areata because it was the first JAK inhibitor that was ever approved. It is not approved for alopecia areata and it will never be FDA approved for alopecia areata.

That is because it hasn't been specifically studied for alopecia areata Okay. So that doesn't mean we can't use it. It just means that it's not ever going to get that label. So Rinvoke is a medication that's approved for lots of different things, including eczema, 12 and up. That is a medicine that is in clinical trials for alopecia areata and may be approved for alopecia areata. But right now, if you are...18, you're the right age, but if you're taking it for alopecia reata, you have the wrong diagnosis. Okay, so you're considered off label. So basically it's kind of confusing, but essentially in order to be considered on label, you need to be the right age, right diagnosis. Okay. And why we care about that is because it's a lot harder for insurance companies to deny patients on label treatment. Okay. Whereas if you don't meet the criteria for what the drug is approved for, it's a lot easier for insurance companies to say no. And these medications happen to be very expensive, and that's why it's even harder. So lots of things we do in medicine are off label, and insurance companies don't necessarily care so much, but that's because they don't have huge price tags. And so it's amazing that we have these three FDA approved, alopecia areata options. We're probably going to see more.

The other medicines might be used, but often they're trickier to get. I feel like that was confusing, hopefully looking at the slide and kind of processing all that, you get it. But we're going to hear about probably a couple of patients on this call who are on, like Zeljans, for example. They probably started many years ago when these drugs up above weren't available. OK, so they're off label even though they're taking it for alopecia areata

LISA ANDERSON, PHD:

(09:03)

Thank you. That's very helpful. I'm going to stop sharing. And I'll just say that if you're new to these kinds of conversations, hang out till the end of the webinar. I will share other NAAF resources where you can go to get more information. And of course, you're always welcome to reach out to us at NAAF. And we will do our best to answer your questions. But thank you for that overview, Dr. Craiglow for this conversation.

All right, so now I want to move on to meeting our wonderful parent panelists who are graciously with us tonight. And the way that I want to introduce the parents to our audience is to sort of do a little mini interview with each of you so we can learn about you and your son or daughter and a little bit about their alopecia areata journey. So I'd like to start with Dr. Cindy Baker.

So Cindy, can you please tell us a little bit about you, where you live in the country, what you do?

CINDY BAKER, MD:

So we're in Columbus, Ohio. I'm a cardiologist, adult cardiologist. And then we have a daughter Emma who's 17. Okay, great. And Emma is 17 now.

LISA ANDERSON, PHD:

And what treatment is she currently on?

CINDY BAKER, MD:

So she is on Xeljanz and she's been on the drug since 2020. So she'll be almost six years actually.

LISA ANDERSON, PHD:

Okay. At what age did Emma develop alopecia areata? Can you just tell us a little bit about like what her early treatment experience was like?

CINDY BAKER, MD:

So we started seeing patches at about age seven, eight. I had to look in my iPhone to see, was like, where are those pictures? So yeah, was, you know, she was quite young.

And from there, she quickly developed much larger patches and then lost all of her hair. had universalis, mean, eyebrows, eyelashes everywhere, gone. And that was probably over a span of, you know, just a year and a half, two years. So we did the, I don't know if you want to know, she did shots, steroid shots, she did squaric acid.

We did oral steroids and then we were hooked up with a pediatric dermatologist at our children's hospital. And that's when we started thinking about, you know, getting her on Xeljanz. So it took a couple of years to get to that. And just last question, just so she's had her, she has regrown her hair. Is that correct? Since we're not showing pictures of our, of the kids we're talking about today. She has.

LISA ANDERSON, PHD:

Thank you. Next, I'd like to introduce everybody to Ruth Ramowitz. Ruth, thank you for being here today. Can you tell us a little bit about you, where you live, what you do?

RUTH RAMA-

WITT:

(11:48)
Thank for having me. I'm an executive recruiter. I live in New York City. My family is here in Manhattan and I have a daughter who just turned 19 on Friday, Bailey.

LISA ANDERSON, PHD:

(11:59)
Wonderful, and what treatment is Bailey currently on?

RUTH RAMA-

WITT:

(12:02)
Bailey is currently on Xeljanz and she's been on Xeljanz since 2022 when she started high school.

LISA ANDERSON, PHD:

(12:09)
Okay. And what, what, old was she when she developed alopecia areata?

RUTH RAMA-

WITT:

(12:14)
Bailey was diagnosed with alopecia areata when she was just shy of being two years old. So she was very, very young when she she when we first discovered those those spots on her head.

LISA ANDERSON, PHD:

(12:26)
And can you just give us like a quick overview of like her treatment journey between when she was first diagnosed to when she started Xeljanz

RUTH RAMA-

WITT:

(12:36)
Sure. started, you know, the pediatrician gave us topical steroid creams, Protopic. Of course, that didn't work. We tried that for about six to nine months. And then I guess right around the time she turned three, we were introduced to a doctor at UCLA who was using DNCB, dinitrochlorobenzene, so contact therapy. And that worked. It helped regrow her hair and we were on that up until she was 15 years old. And that was tough because it's not an easy, you know, topical treatment to deal with. You really suffer, you know, with the itching and the allergic reaction, which is what it's meant to do. And when she was in junior high here in New York, you know, it was, she went through a major flare where she lost so much hair. And at that point we, we did steroid shots.

So we've pretty much, we kind of tried everything. There's plenty more holistic things, diet, all that good stuff.

LISA ANDERSON, PHD:

(13:34)
Yeah. And just also just to confirm, she's regrown her hair and she's

RUTH RAMA-

WITT:

(13:40)
Yes, full regrowth. mean, just very thick, full regrowth.

LISA ANDERSON, PHD:

(13:46)
Okay, great, thank you. And next I wanna introduce everybody to Jeff Bellanger. Jeff, thank you for being here today. Same questions for you. Can you just tell us a little about where you live, what you do and a little bit about your son?

JEFF BELANGER:

(13:59)
Sure. My wife and our two boys, we live in Michigan, just outside of Detroit in a community called Rochester Hills. I work in automotive software. My wife's an oncology nurse. Our two boys, our oldest will be 15 next week, and our youngest, Michael, is eight. And Michael is where we were introduced to the NAAF community and Alopecia areata more generally.

LISA ANDERSON, PHD:

(14:21)
When did he develop Alopecia areata

JEFF BELANGER:

(14:24)
Really from birth, we noticed that he had trouble growing hair shortly after birth and it would come in and it would fall out and it would come in and would fall out. Right around the age of three, he lost his hair and for a period of about two years, it didn't regrow at all. And that's when we started to look externally to see if there are other treatments that we weren't aware of outside of topical treatments, as Ruth had pointed out. We were lucky enough to find NAAF and Dr. Craiglow quite frankly, really kind of turned around our journey a little bit.

LISA ANDERSON, PHD:

(14:52)
And what treatment is he on now? And how long has he been on it? ⁓

JEFF BELANGER:

(14:55)
He's on Olumiant

He's been taking it since 2023, believe. It would have been, I think, 2023 for a couple of years.

LISA ANDERSON, PHD:

(15:06)
Okay, great. And has he regrown his hair?

JEFF BELANGER:

(15:09)
He has, he's had one relapse in that time where he lost a majority of it. That lasted for about three to four months, but his hair is all grown back since then. So for the last two plus years, we've had a really good success with it.

LISA ANDERSON, PHD:

(15:22)
Okay, great, thank you. And then last but not least of our parents, Danielle Quarles Hi Danielle, thank you for being here. Can you tell us a little bit about you, where you live and your family?

DANIELLE QUARLES:

(15:34)
Sure thing. I live in Arlington, Virginia, right outside Washington, DC. I have five children. I am a ⁓ executive in the biotech industry. I run clinical operations for an oncology biotech firm. And I have been involved with NAAF for a really long time. So I have two children that have alopecia areata. The oldest is named Connelly. He's 17 years old. He was diagnosed at age three and my 11 year old son, my youngest, is Damon. He was diagnosed in around 18 months.

LISA ANDERSON, PHD:

(16:05)
and are Damon or Connelly on treatment.

DANIELLE QUARLES:

(16:09)
No, Damon and Connelly are not on any treatment at this time. We did start some treatments with Connelly when he was very young. So we tried the topical steroids, we tried oral steroids, we tried diet modification, Rogaine, and frankly, it didn't really give more than some wispy hairs on his head. Both of my children are universalis so they don't really have very much hair at all. I think Connelly has eyelashes right now.

And over the years, I've asked them if they're interested in trying treatments. And Connelly at age 17 has said, no, mom, not interested. And Damon is very open to it. And he's 11. He's going to be 12 next year. So we'll see. Things may change next year.

LISA ANDERSON, PHD:

(16:51)
Okay, well, thank you, Danielle, for sharing that. I think that, you know, I love the diversity of our panel here, know, just ages and how everybody has proceeded ⁓ thinking about treatment. And I wanna get a little bit deeper into your conversations, you know, how you've discussed, how you came to those treatment decisions and what kind of conversations you have with your children about them.

So the first question I want to pose to everybody or for the folks who have kids on JAK inhibitors, what are some of the factors that influenced your decisions to start treatment? so wherever you want to start with that. I think our audience would be interested to know what those factors are, including where their impacts of the disease on mental health or on social interactions, all the things that.

When you think about how you made the decision or leading up to the decision, what influenced you? Cindy, do you wanna start?

CIDY BAKER, MD:

Yeah, I would say definitely social interactions and mental health had a lot to do with why Emma was willing to start medication. I mean, I think she would have started a lot sooner once she...You know, she was using a wig, and she hated it. And then she finally decided to take that off. She just, and, you know, got to the point where she was having a lot of, issues. was seeing a psychologist, but we knew that there was, you know, certainly some concern and not that things were getting worse. She was very depressed at that point. And, you know, our
dermatologist was very involved and we started talking about the JAK inhibitors and at that point it was just Xeljanz and she had had some good success with that. Emma was on board like, I really want this drug mom, we gotta do this, we gotta do this. You remind us what age she was at that time? She was 12.

So I think, yes, the mental health had a lot to do with the reason that we decided to move towards the drug.

LISA ANDERSON, PHD:

All right. Thank you. Ruth, do you want to tell us a little bit about what factors influenced the decision to start treatment?

RUTH RAMA-

WITT:

(19:14)
I think it was similar to Emma's situation, although Bailey was just a little bit older. Bailey's alopecia had always been patchy and very cyclical. I think the worst part, the worst flare up that she had was in 2017. We had just moved to New York. She was in fourth grade, but she never lost all her hair. During her last year in junior high, again, she lost a lot of hair.

And we pursued steroid injections. And at first it worked, but I'll never forget the appointment or that day when the area of hair loss was just so significant that, I mean, her head was covered in the little blood speckled injections. And it was that moment really that she had it break down emotionally. And of course, even our own dermatologist had an emotional moment.

And that's when our conversation started. It was really initiated by our family dermatologist on JAK inhibitors. And Bailey also drove the conversation where she said, ⁓ you know, mom, I'm going into high school and I don't want to think about my hair anymore. I don't want to think about it. can't, you know, the DNCB kept her up at night. I mean, it's a horrific treatment really.

She drove the conversation, but our dermatologist, our family dermatologist had introduced us to Xeljanz and we just continued the process and pursued it.

LISA ANDERSON, PHD:

(20:46)
Okay, thank you. Thank you for sharing that. Jeff, how about you? Now, your son was quite a bit younger than these young women that we're hearing about. How would the decision come about for you and your family?

JEFF BELANGER:

(20:56)
Yeah, our situation's a bit different. you know, Michael, when he would lose his hair, which was frequently, it would be universal loss. But he was, you know, between the ages of one and three more generally. And at that age, kids are so sweet. There wasn't a whole lot of pressure from society. He certainly didn't feel shy because of that. He was a happy-go-lucky one to three-year-old at that point. When he reached five, and we started to self-educate a bit deeper into the nature of why his hair wouldn't grow. One of the seminars we attended, a webinar, talked about the lowering success rates with hair regrowth if you don't have treatment over a long time horizon. So if it's a shorter time horizon and you're trying to regrow hair, you have better success with that. And so that really triggered Linda and I to dig a little bit deeper, because like Ruth or like Cindy, we'd like our son Michael to have options when he gets older so he can make the choice. And we were concerned at age five when his hair hadn't grown for two years from three to five, he didn't have any hair growth, that if we waited longer, we might be limiting his ability to make that decision when he had critical thinking skills. So that really triggered us to talk to Dr. Craiglow frankly, seek out her perspective on the best treatment for his needs.

LISA ANDERSON, PHD:

(22:13)
Hey, Britt, do you want to comment on that at this point? They know it's hard.

BRITT CRAIGLOW, MD (22:21)
I think it's a really good point that it's funny because in textbooks you always read alopecia areata is a reversible disease. But now that we have this systematic data from clinical trials, we are starting to learn that patients who have had no hair for more than three, four plus years
their chance of responding even to these highly effective drugs starts to decrease. And so that's tricky, right? Especially when you have a young child because we don't want a window of opportunity to close. And by the way, it's not that people who have not had hair for longer can't grow, it's just that fewer do. So I had a patient just the other day who had no hair for almost eight years, no eyebrows.

No eyelash and he's growing hair on treatment, right? So it's possible. It's just, know, if you're if you're looking at the numbers is more likely when you start earlier and more data coming out. It's basically like the sooner the better. And and so that's tricky right now, right? When we don't have an approved therapy under 12 and I think a lot of dermatologists aren't necessarily comfortable treating younger kids, but this is where clinical trials are happening and that's a really awesome opportunity. And there are those of us out there who will treat patients with these medications. And I should have said in that first slide that there are several JAK inhibitors that are actually approved down to two for other diseases. So for example, Xeljanz is approved in the US down to age two for juvenile arthritis.

Olumiant is approved not in the US, but in over 40 countries outside the US for both eczema and juvenile arthritis. And Rinvoq is approved in the US down to two for juvenile arthritis. So that means that they've been specifically studied in patients as young as two years old for those other diseases. So it's not like these medicines aren't ever used in kids or there's no data in kids. It's just that they haven't been specifically studied for alopecia areata in children.

We know that these medicines can be used in children. have information about dosing. It's justified with insurance companies and it is a little sort of, you know, outside the box in dermatology still because we're, you know, awfully well.

LISA ANDERSON, PHD:

(24:46)
Okay, thank you. Thanks for providing that insight. Danielle, I wanted to ask you a little bit about, particularly when your sons were younger, like what kinds of conversations, you know, did you have about treatment? I know you said Connolly did experience some treatment when he was younger. And I know you told me about your involvement with NAAF and even going to the FDA meeting. Can you just sort of tell us?

like what the evolution has been in your household, especially thinking about the younger ages, because I'm to come back to when they're a little older.

DANIELLE QUARLES:

(25:20)
When they were young, we found NAAF very soon after Connelly's diagnosis. And that was just such a blessing to find NAAF. NAAF is an amazing organization and has been so supportive of my family over the last 14 years. Connelly was three when we attended our first conference. So he couldn't even go to the kids camp. He just hung out with us. And in 2017, Connelly and I did attend the meeting at the FDA, the patient focused drug development meeting. And it was amazing. We got up and we talked. We weren't on the panel or anything, but we did stand up and Connolly said, you know, I'd like the option to have hair. I think it's in the, you can even look it up in the transcript. And he's always been super involved in the activities that NAAF has going for young people. He's very well aware of all the treatments that are out there. But when he was a kid, when we got to the point of things just being uncomfortable and you're a kid, I couldn't make it keep going.

Right? This is before JAK inhibitors were even on the scene really, other than the rogue person using Xeljanz every now and again, 14 years ago. And even the minoxidil made his scalp super itchy and dry and he didn't like it. And I couldn't do that to him anymore. It's a grief process when you accept your child as bald and you know they look completely different than all their friends and they're always going to. And you go through that grief process again and again. And I did it again with my second child that had alopecia as well. And we pursued nothing for him because we knew exactly what we had on our hands. And I wasn't going to do steroids or injections or anything like that. And frankly, you know, when it came to diet changes, by that point, I was like, have the mac and cheese kiddo, you're fine. We're all going to be fine here. Everybody's fine. And, ⁓ and we got through it. So I love that there are options out there now. Like it warms my heart so much to hear parents talking about the treatments that their kids are on because it's why we're here. So I want all these children to have all the options in the world.

LISA ANDERSON, PHD:

(27:14)
Yeah, thank you, Daniele. I want to just come back to all the parents a little bit about now that your child is older. like for Emma, for Bailey, and even for Michael, now that they're older, they've been on treatment for a while, is our treatment still part of the conversation? you, know, or is it, how does it impact?

You know, sort of daily life. I feel like someone said to me, like, well, like you said, Bailey doesn't want to, she didn't want to think about it entering high school. Are they still think, do they have to think about it? You know, how does it fit into their, their lives, at least for the, for Emma and Bailey as, teenagers?

CINDY BAKER, MD:

No. I'll say it's just a daily thing because a 17 year old doesn't remember to take their medications. So there's always a discussion about.

You have to take your meds and it's twice a day. and we have had conversations about, we switch the drug to something that is, well, I mean, for her, look, Litfulo is the only thing that, you know, she, she would until next year, and then she would be a candidate for the other two. but the conversations have been very much stopped in her. She is not interested in a switch.

I told her the only thing that may happen is our insurance may decide one day they are not going to cover this and they're going to cover something that is on label. So it is always in the back of my mind that we may have to make a switch, but I'm hoping that will not be the case. But that's really the only discussion we have about it other than, you know, what we do for NAAF, you know, you know, go into the meetings and you know, the fundraising. she is still very much her friends all know about it because she wears so many NAAF t-shirts around. So it is still very much part of her life even though she has a full set of, you know, full hair.

LISA ANDERSON, PHD:

Yeah, thank you. How about you, Ruth? Do have anything to share about Bailey and conversations you have now that she's older or what she's thinking about treatment at this point?

RUTH RAMA-

WITT:

(29:15)
We have plenty of conversations. So she's on Xeljanz and she is on 20 milligrams daily. She's very good. She's very compliant, but we found that she has a greater susceptible. She's more susceptible to colds and upper respiratory infections. Maybe it's because she's on such a high dose. And, you know, we try to initiate conversations about switching medication or even just reducing the dose.

Britt, I've even had Brett (King) talk to her about, you know, how we can do this, how we can titrate. We did that in the June conference in the middle of dinner, because I know she'll only listen to your husband. But she's very afraid of change and she's very afraid of change and doesn't really, it's tough to have these conversations because I get the fear, you know, it's traumatic to think I have this beautiful head of hair and I could lose it.

Um, but it's always, it's always just right here. Um, so we'll see. And we're actually hoping to reopen the discussion on reducing the dose because we just, you know, it's worth the try. You know, she, she does get sick more often. I mean, I'm not sure if it's really, I mean, I think it's the Xeljanz. I don't know. She wasn't sick often before she was on Xeljanz. I'll, I'll leave it at that. So yes, we do talk about it.

LISA ANDERSON, PHD:

(30:37)
Thank you. Jeff, I want to ask you about Michael because he's still pretty young. Do you discuss treatment with him or does it just like, this is your medicine that you take and that's it?

JEFF BELANGER:

(30:50)
certainly not a closed topic. It's not often visited though, because he's been doing it for roughly three years since he was five. It's almost like brushing our teeth. It's just something that he does as a matter of process, just part of his day. So it really is ⁓ nothing that we labor over or discuss. He had a bit of a relapse at the start of this year I mentioned for about four months or so. There's a lot more dialogue and conversation then. He was close to eight years old at that point. That's really when

We noticed that he was much more observant of how society looked at him and how his peers viewed him as being different. So that was a change for us, right? Because before that we'd been treating him successfully for almost two years. And, you he was five in kindergarten. The kindergartners didn't really take notice or care. So that was an eye opening four months for us. That showed us just how he had matured during the process of taking the medication.

But to get back to your original question, it's really a non-issue. It's just something that he does every day as a matter of his daily routine.

LISA ANDERSON, PHD:

(31:54)
Okay, thank you. I want to come back to you, Dr. Craiglow to sort of hear how you navigate the treatment conversations in your practice. Like, is it, are you, and are kids involved or is there an age at which you're engaging more with the children on treatment or is it always based on what the parents, you your engagement with the parents? Can you sort of give us what that, I can overview what that looks like?

BRITT CRAIGLOW, MD (32:19)
Yeah, I mean, it's tricky, right? Because the child is my patient, really. The parents are not my patient. And people often say, you don't want to just treat the parents. But I think even very young children often, there is an impact on the way they interact with the world, or the world interacts with them. And I think for me, one thing I often find myself saying is like, if this were arthritis, we would be treating it. We wouldn't be having some big discussion about it. We would just be treating it. And with arthritis, we don't say things like, well, you're you're getting around. OK, most days. we're not going to treat you like now. It's a disease. And what do we do in medicine? We treat diseases. Right. And I think, you know, seeing approved therapies, that conversation is shifting. Right. But we're still kind of stuck in this like.

You know people saying it's just hair which is like the most ridiculous thing in the world. But you know is everybody on this call knows and everyone listening like nobody really gets it right. So you know my my feeling is that if if alopecia is affecting the way the world interacts with the child or the way the child interacts with the world in any sort of meaningful way then treatment is for sure on the table and you know.

I do treat very young children now. Again, we have approvals in other disease states in young children, right? And so oftentimes my goal is maybe it's not affecting them today when they're three, but like it would be really nice to start pre-K or kindergarten with hair, right? And so sometimes we are kind of treating their future self because hair takes a really long time to grow, right? And especially girls for whom it's more sort of normal to have longer hair. I I had a boy with longer hair than I have, but he wouldn't get attention for short hair, right? Whereas girls, when they're growing their hair, they have, oh, your adorable pixie cut. Okay, fine, if you chose to cut your hair like that, that's one thing, but if you didn't, you're all of sudden getting more attention for this thing that you'd rather not deal with, right? So the whole process...

I sort of hate the word journey, but like it kind of is a journey. And I think it's really different from things like eczema or psoriasis where it's like, OK, you decide you want to treat, we treat. Right. And then hopefully if we get the right medicine in a couple of months, like we're there. Right. Halapisha is so different because it's months to years before you kind of restore normal. And that's the way I think about it. Like we're not this like cosmetic thing that we still hear from insurance. It like makes my blood boil. But we are not trying to enhance anyone's appearance. We're just trying to restore normal. Nobody wants to be a supermodel. They just want to look like they used to look. And I think everybody has a different feeling about treatment. And we should note that these medications are not vitamins. They are immune-modulating medicines. The more we see of them in younger, healthy people, think the safer,
the data looks and the better we feel. you know, it can be a hard decision. And I think for some kids, it's like, it's obvious that's the thing we have to do. And other kids may be a little bit less obvious. you know, sort of what would it mean if this were to get worse? you know, let's, I think the hardest situation is sort of the kid who's, you know, 12 and hasn't had hair for a long time and feels is totally fine with it, like it's sort part of their identity oftentimes. We don't want to tell them that they're not OK as they are, because of course they are. But we also don't want to feel like, geez, when they're 18, are they going to look back and think, oh, man, I wish I had tried treatment. So it's really complex. There are so many issues. But I think, again, this is an autoimmune disease. And in medicine, we treat diseases. And so I think it's appropriate to treat anybody who's interested in being treated.

LISA ANDERSON, PHD:

(36:27)
Okay, thank you. Thanks for that insights. I want to just open up to the group about other conversations that you have, not necessarily treatment focused, just about living with alopecia areata as a visible difference or a chronic condition. How have you approached those conversations? I was going to ask you, Danielle, if you could start us off on that.

DANIELLE QUARLES:

(36:53)
Sure thing. Yeah, and I just want to add to what Britt was just saying. I might be in your office in a few months with my youngest. Like, because we're that close. He's really interested in pursuing maybe something. He's not sure. And he's 11. And the main reason is because he has some sequelae conditions to the alopecia areata. Because he has no eyebrows and no eyelashes, he has an eye condition. It's called vernal keratoconjunctivitis. Essentially, he's got ⁓ really bad hives on the insides of his eyelids. So he gets corneal ulcer repeatedly.

It's really not fun. And we have a flare like every year or so with us and he has a lot of like ophthalmology intervention because of it. And I do think that you have to remember it's not just hair. There are so many other things that are impacted by not having hair. And we might be getting to the point now where pursuing a treatment for him is where we need to be.

BRITT CRAIGLOW, MD (37:44)
Yeah, hair has a function, right? And that's like a perfect example of why it's important sort of beyond just the way we look. But again, the way we look and our identity is really, really important, right? So happy to chat.

speaker-5 (38:02)
Yeah.

LISA ANDERSON, PHD:

(38:05)
Thanks for that and glad you guys could connect on that. Danielle, did you want to go back to like conversations about chronic living with alopecia areata chronic?

DANIELLE QUARLES:

(38:14)
Yeah, living with alopecia areata for my kids. Visible condition. Yeah, it's just normal, right? Like for them, it's just they feel like they are alopecia kids. They feel like all their friends know them as having alopecia. And as far as being a visible, you know, sign of who they are, they both are very comfortable with being bald. like Dr. Craiglow I was saying, like,

I don't want to disabuse them of that notion or make them think that there's something they have to fix. So I like to have conversations with them that ask them about how they feel, what they want, where they're feeling like they're being pulled at any given time. And right now, my kids don't seem to be pulled towards treatment.

LISA ANDERSON, PHD:

(38:53)
And how do they navigate that in their social lives or in school and things? is... Go ahead.

DANIELLE QUARLES:

(39:00)
We're pretty lucky. We've been in the same school system. We live in a pretty small public school system. So they've been in the same pyramid that goes up through the grades together. So they are, you know, they're pretty well insulated in a lot of ways from the impacts of being the bald kid. If you're running around with the same few hundred kids over and over, people do tend to know who you are. Every once in a while we get the comments like at an amusement park or something like, you know, there's definitely the young kids that will come over and say something. But I think from a day-to-day standpoint, they're pretty well able to navigate it.

LISA ANDERSON, PHD:

(39:34)
Great, thank you. Anybody else wanna comment on on any conversations that you have or have had in the past about living with a chronic condition or visible condition that you think could help people listening, conversations that you had with your kids?

RUTH RAMA-

WITT:

(39:50)
Sure, mean, I'd love to share. think this is a tough disease. It's tough. It's got a physical impact, but also an emotional impact. And I think it has truly shaped Bailey's character and personality. She's tough. She's very driven. don't bother her as easily as it seems, but I know it does.

I think it's always this thing that hangs over her head, literally and figuratively. There's always the fear, you know, what if the Zell Jan stops working or what if we can't get it? Because we do get it and we have to be resourceful to get it because of the whole insurance issue. So it's always there, even though you see her, some people are like, she's now in college and I don't know if many people know that she even has it, but she's...now become a very active volunteer for NAAF. She led the first two walks here in New York. mean, it's given Xeljanz and having her hair has given her the confidence and the ability to be a strong advocate for NAAF and for the community. And yet, it's still something that's just always there.

LISA ANDERSON, PHD:

(41:10)
Yeah. Anyone else Cindy? would say Emma feels the same way. I mean, she has a lot more confidence with her hair now. But there it's, she knows this is like hypertension or diabetes that she's going to be on some therapy if she wants hair, likely longterm. And then that we're going to have times where she's not going to be able to be on the drug. You know, we've had discussions about, know, what happens when you decide to have a kid.

You know, but we know that's way down the road. So we don't talk about it too much. So right now it's just, we kind of do our day to day thing and we really don't, it doesn't come up unless she feels that, you know, maybe the Xeljanz is causing her to gain weight and then she wants to blame it on that.

RUTH RAMA-

WITT:

(41:52)
pain.

It's, this is your second cold in three months, right? Reduce or elevated cholesterol or, you know, the acne. mean, all these things, it's just still always there. Beautiful. Emma looks fabulous, by the way. But you know, they have a full head of hair, but this is still just a little bit beneath the surface.

LISA ANDERSON, PHD:

(41:56)
Yeah.

DANIELLE QUARLES:

(42:05)
You

BRITT CRAIGLOW, MD (42:12)
Right.

LISA ANDERSON, PHD:

(42:17)
Okay, Jeff, anything to add on that or maybe those conversations that you guys are having?

JEFF BELANGER:

(42:21)
Yeah,

I mean, it's a little bit different than conversations we have with Michael. I would say on the topic of conversations at his age, what we found is a really, really play a role in the community with educating. So for Michael, when he started school, when he started in preschool and first grade, we brought books into the class, introduced them to the topic and educated the teachers and the principals about what he had and why he looked different. I know that probably is not quite a fit for high school to be able probably a little awkward, but for Michael's age, for someone that young, we found that was really, really helpful. As Ruth pointed out, or I'm sorry, it might have been Danielle who pointed out, to kind of grow up with the same group of kids, we're in the same type of community. So was really great to give them a baseline of understanding what alopecia areata was and how it impacted Michael. And we've seen over the last couple of years that when we go into classes, even though Michael's re-grown his hair, kids still understand that he has it and appreciate it.

LISA ANDERSON, PHD:

(43:12)
Yeah. OK, thank you. I want to invite the folks in the audience to submit questions in the Q &A box in the Zoom. ⁓ There are some questions coming in, a lot of questions about details about treatment. And I will ask a few of those. But I will also refer you to the audience to other NAAF resources at the end of this webinar that really dig into specifically the details about treatment, also questions about insurance, et cetera. Before we go to the questions, I just want to give everybody the opportunity, if there's something that you really want to share with this audience about your experience, what you've learned or what you think is important for them to know going forward as they're navigating their journey. Although I agree with you, Dr. Craiglow, that word, I overuse it. I apologize.

Any thoughts before ⁓ I dig into the questions?

JEFF BELANGER:

(44:11)
You know, I might just offer people who are on this webinar are familiar with NAAF already for us and our family. We're typically very private, but it really did transform the way that we engage with Michael's alopecia areata, how we treat him. And then also, it's allowed us to kind of provide him with representation of other people who have it, which has been great. so this community of people has been really special to us. It's really, I'll reuse the word journey just to torture Dr. Craiglow.

It's really made our journey much better these last few years than it was the first five.

LISA ANDERSON, PHD:

(44:46)
Thank you for saying that. I didn't pay you to say that. So the NAAF team appreciates that. And I would just say keep looking for the dermatologist that is willing to think outside of the box and not just use the topical creams and call it a day at that. So I mean, think obviously dermatology teaching residencies are now starting to teach their trainees, you know, these doombads, but I think there's still a lot of dermatologists out there who are not interested in treating this disease. So you need to keep working to find that person who's gonna take care of your child.

RUTH RAMA-

WITT:

(45:24)
I totally agree with Cindy. We're lucky we have a family dermatologist who really cares about Bailey and who looked out for her and saw the signs of a ⁓ fragile mental state. Maybe I didn't see it, but she saw it and she wanted to get ahead of it. That's one thing. So find that dermatologist that really thinks about your child. And two, I do need to plug NAAF.

Because when Bailey was diagnosed, and just like Jeff, when Bailey was diagnosed in 2009, nobody knew what it was. And we were in LA, wasn't like, you know, we were living in a, you know, metropolitan area. They knew what it was, but it was just about, it's self-limiting, use this cream. There wasn't a lot of information out there.

And I found NAAF and I called the 415 phone number and there was a lady who answered the phone and sent me a folder with ditto sheets and brochures. And that was really the beginning of my connection with NAAF. And through the years, know, my volunteering and my relationship has been up and down. I was at the FDA. I don't know how I missed you, Danielle. Now Bailey's very involved. So NAAF has been our lifesaver, really.

DANIELLE QUARLES:

(46:42)
And can I just to add in come to the annual meeting, please bring your kids. My kids have been coming to the annual meeting their entire lives. They have huge groups of friends all over the country. They have text strings. They call each other all the time. They're best buddies. When somebody does make an offhanded comment at a amusement park or something like that, they have a group of people that know exactly how that felt and they can go to. And I don't need to be a part of it because they don't want to share those types of things with their mom because it makes their mom worried.

But having peers, like it was the greatest thing ever this past year where my 11 year old actually was like, mom, here's all my phone numbers. Now I have my own text string too on his Apple watch. So it's life-changing for these children to go to the annual meetings, meet these other kids, have fun. They're not just sitting around talking about alopecia. So please get more involved in NAAF if you aren't already. All right, I'm done.

LISA ANDERSON, PHD:

(47:33)
Alright, well, that was very nice. Thank you. Thank you all for those kind words about NAAF and for being here to help others. One of the questions that has come in, I think you'll have thoughts on this, that this family says, have a lot of questions about our daughter having cancer. Have you experienced this and how do you navigate it? Has anybody experienced that?

Maybe not.

BRITT CRAIGLOW, MD (48:01)
I'm assuming that the child has cancer because she doesn't have hair.

LISA ANDERSON, PHD:

(48:05)
Yes.

DANIELLE QUARLES:

(48:06)
okay.

BRITT CRAIGLOW, MD (48:08)
I know you like I'm sure your kids have yet.

LISA ANDERSON, PHD:

(48:11)
yeah, all the time.

RUTH RAMA-

WITT:

(48:12)
Yes.

LISA ANDERSON, PHD:

(48:14)
And how do you have you handled that? Do you explain or just let it go or?

DANIELLE QUARLES:

(48:20)
I have alopecia areata. It's an autoimmune condition that makes my body not grow hair. Or teach them that when they're young and that you can be really snappy about it too if you want.

RUTH RAMA-

WITT:

(48:32)
What we taught Bailey when she was little was, I have an autoimmune condition. My immune system attacks my hair follicles.

LISA ANDERSON, PHD:

(48:42)
said about the same thing. Yeah. Yeah.

BRITT CRAIGLOW, MD (48:45)
think this is a really good, important point, actually. I think the questions are going to happen, whether we like it or not. And I think that can be a very uncomfortable situation, especially for a child, if they get the question directly. And so I think it is like you guys basically said you did. You need to arm your child with an answer. It still isn't probably going to feel good, but at least they can kind of get in and out and move.

about, you know, get on with their day and not have it sort of ruin everything. So my little recipe is explain, reassure, and then redirect. And so kind of same thing, like, you know, you say what it is and everybody has a different feeling about how much or how little they want to say. Sometimes it's nice to say, you know, I'm fine, I'm healthy. And then especially for kids talking to another child, like move on, you know.

Did you do the homework last night? Did you watch a football game? Whatever, like get out of it quickly. And I say like, write it down, practice it, you know, have it right there on the tip of your tongue. So when that scenario comes up, you're ready and you know, you can move through it more quickly. I think that's really helpful for, know, for people for whom the alopecia is, you know, very obvious. But this is also complicated, right? Because as a parent, there's this

You feel bad that you feel bad because your child doesn't have cancer. They're not sick, right? And again, I always tell my patients and their families like things could always be worse. It doesn't mean that what you're going through isn't hard, right? Like perspective is useful, but this is very hard period and it's hard for everybody and that's really normal, right? And I think again, like the outside world just doesn't understand the experience in the way.

you do. So all these comments like trying to make you feel better, like, it's just hair and thank goodness it's not worse. Like they're not, you know, they're trying to be helpful, but ultimately they're really not helpful. so it's tough. It's so complicated.

LISA ANDERSON, PHD:

(50:43)
Not to just keep the spotlight on you, Britt, Dr. Craiglow I see a lot of questions that are coming in that asking about, well, if a child's not eligible for treatment based on their age and the drug label, what can you do? So perhaps they missed the early part of the talk. If you could just reiterate what someone who has a child who's not yet 12 but has lost all their hair and they're interested in pursuing treatment, can you do that?

BRITT CRAIGLOW, MD (51:14)
Yes, so mean, the majority of my patients are now under 12. And so just because something is not approved for the patient's age doesn't mean we can't try to get it. Now, oftentimes this requires an appeal process with insurance. And that appeal process, unfortunately, isn't always successful, but often it is. And this is where I write a letter. have families write a letter, have a child draw a picture, you send photos and basically you ask them to reconsider their decision. And this is where your dermatologist can send articles. you know, oftentimes if you put that effort in, like we are actually successful. There will be some clinical trials enrolling patients down to age six. Those are really amazing opportunity because usually at the end of the trial, you get the drug, you know, until it comes to market, which is exciting. I think NAAF probably has resources about clinicaltrials.gov on their website and all of that. But yeah, just because it's not approved for the age doesn't mean we can't try to get it. But again, this is where you need a dermatologist who's comfortable doing that. NAAF has this doctor finder on their website. Pediatric dermatologists, I think oftentimes are more comfortable treating children with these medicines. For sure, not all of them.

I think just within the community, like asking if you meet somebody online whose kid is on treatment and they're under 12, like, who do you see? Is that somebody within striking distance of you, et cetera? And I often say, like, where there's a will, there's a way. But it can be tricky.

LISA ANDERSON, PHD:

(52:51)
And as you mentioned, there are also questions about the insurance coverage. And I think on this group, there's a variety of situations happening, but it is possible to get coverage for off-label treatment. It just may require some work and maintenance. And again, in a minute or two, I will share resources about that, as well as the clinical trial listings that you mentioned.

Maybe just one or two other questions. This person wrote, how do families handle the multiple perspectives out there for alternative or natural treatments? Do others feel pressure by the wide and strong opinions of other alopecia parents?

Anybody wanna take a stab at that?

JEFF BELANGER:

(53:42)
I'm happy to go. Our experiences are limited to my fellow panelists. They're not quite as deep and rich. And we've had good success with the primary treatment that Michael's taken. So other opinions haven't been very impactful for us. We've just been very fortunate with the treatments that he's had. So I know that's not much of an answer for whoever is asking the question, but that's kind of our experience so far.

RUTH RAMA-

WITT:

(54:04)
Well, I'll add my experience because Bailey was diagnosed in LA. So it's the mecca for alternative therapy and holistic and diet and this and we tried everything. I was open to it. I was, you know, very I was desperate to find something to help her. And everyone had an opinion, you know, try this diet, try try onion juice on her head. And I think, you know, it's

Now it came to a point where it was, you know, we're okay. We know what, what we would like to pursue Bailey's okay. And that kind of, you know, think that kind of shut down those types of conversations, but a lot of it comes from people just wanting to help. I think, but yeah, we heard a lot of advice and suggestions and some we followed and others were just way too out there, but it's tough.

LISA ANDERSON, PHD:

(55:01)
Any other comments from anyone?

BRITT CRAIGLOW, MD (55:05)
I think there's some comments in the Q &A about identifying a root cause. we hear that a lot. I think it's human nature to want to have an explanation for something like this. It feels kind of wild that this could just happen, and there's not a singular reason for it. But this is sort of like pieces of a puzzle.

kind of coming together to make it happen. Autoimmune diseases, they do just happen, right? We know it's a combination of what your genetics are, how your immune system works. We don't understand very well the role of sort of the outside world. But some kids get juvenile arthritis. Some people get diabetes. Some people get lupus. These are things that just happen. And at least from what we understand right now, there isn't some

something in your environment that you can change to make this different. And for sure, there are going to be lots of people who say, well, I did this diet or we took this route and the patient grew hair. And it's hard to know whether or not that's related. had a great example recently of a patient who had had no hair for about two years until I met her.

And then we were sort of thinking about moving forward with treatment, trying to get something covered. And then with no change, she started to grow some hair. Now, if that family had gone gluten free, if they had moved, if they had taken this vitamin, they would be saying, well, this is why it grew back. But there was no change and it just grew back. So again, it's human nature to want to have an answer. But I think

Ultimately, that's really you're not going to kind of get there, at least right now. So instead of really kind of fixating on why, I think it's more useful to move towards like, OK, we're to do about it. How are we going to treat it? And for sure, that's easier said than done. But I see people spending a lot of mental energy and money and time chasing down sort of that root cause when we don't have an explanation or singular explanation.

LISA ANDERSON, PHD:

(57:26)
Right. Well, we are past time. So I'm going to wrap this up here. I think that's a great place for us to end Dr. Craiglow. And it's so complicated. It is really hard in any single hour for us to really get into all of the nuances and the things that we do know about alopecia reata and treatment. So I encourage the folks here on the audience, please come back to other webinars, come to the NAAF conference, visit our website to learn more.

Thank you so much to all of my panelists for being here and sharing your experiences and expertise. And I am going to share my screen again and wrap up this webinar.

Okay, let's see. All right. As I mentioned several times, I would like to point the people in the audience to some additional NAAF resources that you might be interested in, especially if you're new to these conversations. So we have several webinars on treatment related topics that are on the NAAF website. We invite you to watch them. This includes Dr. Craiglow's presentation on pediatric alopecia areata treatment, where she

is able to go into more detail than we've been able to go into tonight. We also have our new resource, which is a treatment and insurance navigation toolkit. This part of the website goes into in-depth on a number of topics, including available treatments, insurance coverage, and patient assistance programs. If you're trying to find a knowledgeable dermatologist, please check out the doctor.

Finder on the NAAF website. You can use this QR code to get to that part of the website. The Dr. Finder lists board certified dermatologists in the US with experience in treating alopecia areata. The listings also include dermatology nurse practitioners and physician assistants. And you can search the listings by state to find a healthcare provider with expertise near you. And then finally,

⁓ We also, or Dr. Craiglow mentioned that there are clinical trials happening now. There are several that are currently recruiting adolescents and there are more trials coming. We have a listing on the NAAF website at naf.org backslash studies with more details about the active clinical trials. And as always, we at NAAF are here to help you. If you have additional questions, just email us at info at NAAF.org.

and a member of the NAAF team will get back to you and we will do our best to help you and answer your questions. So I want to say thanks again to our panelists. We really appreciate you being here. And of course, thank you to the audience for joining us this evening. We hope that you'll share your feedback on today's webinar and help us plan future presentations.

If you complete the short survey that pops up in your browser at the end of the webinar, we will read your feedback and we definitely use it to plan future webinars. Our next webinar topic is the male perspective on confidence, careers, and alopecia areata. What happens when life starts moving fast and alopecia areata is part of the story.

this panel conversation, in this panel conversation, you'll hear from young men and teens and as they share how they're navigating life's big transitions, like school, college and career, all while building self-confidence and finding purpose along the way. You'll hear honest reflections and stories and how these can lead to personal growth and strength. We will be announcing our webinar panelists soon. This webinar is gonna take place on Tuesday, December 16th at 7 p.m. Eastern.

for Pacific and registration is now open and you can scan the QR code here to register. If you are inspired by the personal stories you've heard tonight, one way you can take action is to become a NAAF advocate.

Advocates raise awareness about the issues important to the alopecia areata community such as research funding, insurance coverage for wigs, and access and affordability of treatments. There's a place for everyone in NAAF's advocacy and you can get started by signing up to learn more through our advocacy email list. And we do encourage you to stay in regular touch with NAAF. With this QR code, you can subscribe to our email list and get regular updates on alopecia areata news and research, our monthly electronic newsletter.

and notices about upcoming webinars or conference and other programs. To learn more about NAAF and the resources we offer, please visit naf.org or email us at support at naf.org. And this concludes today's webinar program. Thank you all for joining us. We look forward to seeing you on the next webinar. Okay, good night, everybody.