AthenaGierbolini: My name is Athena Gierbolini.

John Whyte, MD, MPH: Today on a special episode of Health Discovered.

Gierbolini: I have 14 years lived experience with a diagnosis. I had signs and symptoms for quite some time before then, probably starting in puberty.

Whyte:  We take a closer look at Hidradenitis Suppurativa, commonly referred to as HS.

Gierbolini: When I first started, I had gone to a dermatologist who tried a whole bunch of standard treatments that my HS was just outpacing. I tried the antibiotics, I tried the hormonal components of things. I had tried a few biologics and my body would respond and then stop.

Whyte: This challenging chronic skin condition affects approximately 1% of the population, yet patients often face years of misdiagnosis and fragmented care.

Gierbolini:I was exhausted from being in pain and then trying and it failing and being in pain and trying and it failing. And now it's starting to spread, and now more parts of my body are starting to get disfigured and I don't know what to do.

Whyte: HS is characterized by painful bumps that develop where skin rubs together, but we now understand it's not simply a skin issue. It's a complex inflammatory condition requiring coordinated care from multiple specialists.

Gierbolini: And so I got involved in clinical trials, which put me in contact with an HS specialist. Getting to know that there are specialists out there that have high degrees of expertise when it comes to HS was probably the game changer for me. And I'm so fortunate and so lucky that I now have a team of people who are supporting me emotionally with the support groups and the patient community, which is just a wonderful and beautiful thing. But then I also have a few doctors who know and understand so much about this disease. So, when I tell you that I am at 90 to 95% controlled disease state, it's such a beautiful thing. But it is a journey to get there.

Whyte: Now, despite growing recognition of HS in the medical community, many patients struggle to assemble the comprehensive care team they need.

Gierbolini: I got involved in HS advocacy to the point where I am the very proud president of Hope for HS, and we have in-person and virtual support groups all around the country. So, if you can't access an HS specialist, I would work wholeheartedly with your dermatologist. There's a website, the HS Foundation, that is both for patients and providers. There's a plethora of resources on there. There are prior authorization templates that were written for doctors that know how to do this on this website. There's plain language summaries, so doctors who have read these studies and then helped just do the Googling for us and help us understand these studies a little bit more. And I hope that more and more patients are able to feel empowered and know that there are enough resources and treatments to drastically improve their quality of life.

Whyte: So how can we best manage life with HS? Which specialists should be part of your care team? And how can patients navigate our complex healthcare system to find the right treatment? The answers, when Health Discovered returns from a short break.

Today we're fortunate to be joined by Dr Jennifer Hsiao, a leading expert in HS. She's a dermatologist and clinical associate professor of clinical dermatology at Keck Medicine of USC, where she directs the Hidradenitis Suppurativa Specialty Clinic. Her extensive research and patient-centered approach have made her a vital resource in optimizing care for HS patients. Dr Hsiao is particularly passionate about improving coordination between different medical specialists to provide better outcomes for those living with this challenging condition. Welcome to Health Discovered, Dr Hsiao.

Jennifer Lin Hsiao, MD: Thank you so much for having me here today.

Whyte: Well, it's great to connect with you. And you know, we heard from Athena at the top of today's episode who I understand is a good friend of yours. So I'm curious to hear your reaction to her story.

Hsiao:  Yes, I've known Athena for some years now. I've had the pleasure of actually working with her on several different initiatives to try to improve care of HS for people living with this condition. Um, we also serve on the board of directors together for the HS Foundation, which is a wonderful nonprofit organization. And honestly, every time I hear her story or the story of somebody who has HS, it just reminds me again of how much more work there is still to be done to make sure that we are able to catch patients early and really try to reduce their suffering. You know, hearing her talk about that cycle of pain, trying things, things not working, you know, I think people can start to sometimes feel hopeless.

Whyte: Mm-hmm

Hsiao: Um, and I really want listeners to know that there are treatments, there are medical procedural treatments, there are people who understand HS and can help them feel better. That's an important message.

Whyte:                              Absolutely. And we're gonna get into all (laughs) of that as well, so I'm glad you're teasing our audience as to what they'll hear. You reference how there's still a lot of work to be done when we talk about this condition. But we've also made a lot of progress, you know, in the last five to 10 years, so how has your understanding of HS evolved since you first began specializing in this condition?

Hsiao:                                Yeah, I've been in this space for over 10 years and just during that time alone I've witnessed such an incredible growth in terms of how we treat and approach this condition. And absolutely I wanna make sure that we give credit where credit's due. We've come a long way, even just having FDA-approved therapies that are available for HS. Before 2015, there were zero medications that were approved for HS. Everything was an off-label medication where you have to battle with insurance, and I think a lot of patients were stuck in kind of an endless cycle of antibiotics and getting painful lesions incised and drained. So I think where we've made a lot of progress is in terms of the recognition that this is a chronic inflammatory skin condition. It's not infectious, it's not contagious. Antibiotics are not an appropriate long-term therapeutic option and we really need to get to the underpinnings of this condition so that we can address that over-inflammation pathway that a lot of these patients are exhibiting. And so I think that recognition has been key to hopefully reduce the number of emergency visits that these patients have and urgent care visits-

Whyte:                              Yeah.

Hsiao:                                ... and really make it an outpatient condition.

Whyte:                              And that's an important point that there now are FDA-approved treatments. And you often talk about, and we heard about the importance of the right team. And for this condition, it's really about a multidisciplinary care team. So before you and I got on air, I talked to you about how I often see it in practice and internal medicine. And often that is where patients first go when they have this skin lesion perhaps under their armpit and they're not sure, and then the physician might prescribe antibiotics or there might be, you know, some type of injection. And sometimes the primary care doctor might not refer them, or if it's not happening too often, only a few times a year, patients may not seek specialty care. But what we have learned is the importance of a multidisciplinary team. But listeners may be saying, "Well what, what does that mean? Who, who should I be including?" So help educate our listeners how they should assemble and who should they assemble in this team.

Hsiao:  When I was hearing you say you were a primary care doctor, I was like, "Okay, we know you see HS because it is not-"

Whyte: Yeah. You were nice to me. Thank you. (Laughs).

Hsiao:  (laughs) It's common.

Whyte:  It is. Yeah.

Hsiao:  We see... You know, it's 1% is what we're seeing. That's one in a hundred individuals. You're right. A lot of times patients will start in that primary care office including in a pediatrician's office 'cause a lot of times these symptoms may start around puberty. For me, having that referral to a dermatology provider is really key and part of that is, again, to have access to these other therapeutic options that are out now that are FDA approved that oftentimes dermatologists have a lot of experience prescribing because they've been used in other skin conditions as well.

And then other important providers include having a really good surgeon who's willing to help with removing areas of HS that are persistent and that aren't going away with medical therapy, and so I think that primary care dermatology, plastic surgery for example, or a derm surgeon. I can't underplay the importance of having mental health involved and that's because so much of HS in terms of comorbidities is tied into depression and anxiety, and so I think having that adjust is really key.

Whyte: Sure.

Hsiao:  And pain management as well. Just treating the HS alone doesn't get rid of that chronic persistent pain, and I think that's where having pain management on board is helpful.

Whyte: And nowadays, as I referenced at the top, there are some specialized HS clinics, but how should patients prioritize it? Should they start thinking first about the dermatologist and then the surgeon? Help patients think through they can't do everything all at once so they're gonna have to prioritize.

Hsiao: I think the key referral to ask for is to a derm provider. The reason I say this is because even if surgery is needed down the line, outcomes are better if the person living with HS has their HS medically optimized. And then really I think getting a sense of whether or not that derm provider is comfortable with HS. And yes, there are HS specialty clinics and they can be found on that HS foundation website that Athena mentioned earlier.

Whyte: Mm-hmm.

Hsiao: Basically you go to the HS Foundation website, you look up resources and there's a clinic finder where patients can look at vetted HS specialists across the nation.

Whyte: I love that. Yeah.

Hsiao: But access, right? Not every state has one listed. Our goal, honestly as the HS Foundation too, is to make all derm providers feel comfortable managing HS. So, those centers become a resource for very recalcitrant challenging cases. But hopefully, if there's somebody who has HS, they go to a derm provider, the derm provider knows what it is and feels comfortable with treating it.

Whyte: Okay. And it's all about on Health Discovered how do we help people advocate for themselves. So, I'm just gonna be honest here. Sometimes in some areas of the country it can be hard to get an appointment with a dermatologist. There can be a wait at certain times. So I wanna ask you, say after your first episode or at least the first time you went in and you got diagnosed typically at the primary care physician, but not always, perhaps in urgent care. Do you advocate for yourself then and say, "I wanna see a dermatologist"?

Hsiao: I would say yes. I want to see them before there's multiple painful abscesses or nodules, multiple different tunnels. I wanna see them early where I actually think medications can make the most impact. Even if you're... You went to the emergency room and maybe a provider said, "We think this could be hidradenitis suppurativa or HS." The automatic reflex should be like, "I want a referral to dermatology."

Whyte: And, and to be the squeaky wheel and keep asking for it. So you, you get into the appointment, what are some of the key questions a patient with HS should ask the dermatologist?

Hsiao: I think the first thing is basically to have the dermatologist confirm the diagnosis. And then moving from there, if there are questions regarding what causes HS, what treatments should I be thinking about, are there other members of my healthcare team that I should be thinking about assembling, these are all key questions to ask. And if there are areas that need to be, for example, removed surgically, does that derm provider feel comfortable providing that procedure or is another referral needed? And so those are the types of questions that I think could be helpful for like a first time appointment.

Whyte: More from Health Discovered after a quick break.

And now back to my conversation with Dr Hsiao. I wanna get very practical. Biologics particularly have transformed treatment for many patients, but accessing them can be challenging. So what advice do you have for patients navigating insurance approval for these medications? And maybe even just remind our audience what we're talking about when we talk about a biologic.

Hsiao: When we talk about biologic medications, these are medications I think of as being very targeted to specific inflammatory pathways that can be overstimulated or overactive in people with conditions such as HS. And so, for example, the three current FDA approved medications for HS include Adalimumab, which is something that blocks a marker called TNFα. And then there is something called Secukinumab and Bimekizumab, which both block another inflammatory marker called IL-17. It's less important what those specific names are. It's more important just to know that these are inflammatory markers that have been found to be elevated in people with HS, and so targeting them and trying to bring them down can help in terms of reducing HS symptoms.

It's very helpful that now those three are approved because honestly with approval, that cuts down on a lot of that ability to access the medication. It's when... You know, Athena actually mentioned this too, right? She actually has tried biologics, sometimes it worked and then it wouldn't work anymore. And then you start having to go into the realm of not approved biologics that are being tried for HS. That's where it can become more challenging, and honestly the HS Foundation website with those prior auth templates have been a lifesaver. It's so helpful.

Whyte: And how is that helping you in your practice when treating patients?

Hsiao: You know, a lot of the prior auth process for us on the provider side is basically looking up references to support why are we thinking this medication could work, but that work's been done for us. So there's like 20 references listed on the patient side letting their provider know, hey, there is this resource you could use. It can be helpful 'cause you're saving that office time.

Whyte: And if they initially get denied, what strategy do you have? A lot of people say no matter what, you still appeal it and you keep going forward. It takes time, it takes resources and effort. What strategic advice would you give folks who are initially denied?

Hsiao: I spend a lot of time on appeals. Um-

Whyte: Okay.

Hsiao:   ... there's a lot of appeals that you can do either through written form or through peer-to-peer sort of discussions with, um, you know, somebody from insurance to try to discuss why, um, you think the medication is needed. The other thing is a lot of these medications also have patient assistance programs directly from, for example, the company who makes the medication. And so that's another route where you can take the denial and ask basically your provider, "Do you think we could actually go through the company to see if with this denial we can get the m- medication assistance?" And I've definitely used that route as well.

Whyte: Yeah, and it's a good reminder to kind of prompt physicians to do some of these things. It may not always be top of mind or, you know, with the rush o- of seeing patients, sometimes things can fall through the cracks. So these are great reminders. But beyond medications, what other treatments or support services should patients be aware of that might be covered by insurance?

Hsiao: Yeah, so for earlier milder disease, I always talk about laser hair removal because we do think that HS starts with the hair follicle, right? And it's a disease of the hair follicle, and so the thought is if we can try to reduce that burden of the hairs, that perhaps we can help optimize for less disease progression. More data needs to be done to support this, but in some cases laser hair removal can be covered but it really varies insurance to insurance and it can be a harder battle to fight than trying to get a medication covered. But that's something. Another one is a lot of patients with HS will sometimes say that their HS is triggered by sweat or heat and there's actually been papers showing that urgent care and dermatology outpatient visits for HS go up during the summertime, probably because patients are flaring more.

And so I think prophylactically trying to reduce that, sweat may be helpful and so botulinum toxin or Botox injections have actually been done for HS to try to help with that. And then for those sort of persistent tunnels or lesions or bumps with HS that just don't go away regardless of the medication things you've tried, whether they're topicals or hormonal and metabolic or a biologic, then I think that surgery is probably going to be needed to really get rid of that lesion. And that's where either the dermatologist can do it or a surgical partner.

Whyte: Now, we've spent a fair amount of time talking about that often this is a condition that is best managed by multiple specialists. But we also see sometimes if there is a lot of cooks in the kitchen, sometimes there can be a disconnect. So how do we help patients navigate the different specialists? Sometimes we talk about, you know, there needs to be a quarterback sometimes. That's the primary care physician, maybe that's the dermatologist. What's your advice on that?

Hsiao: I think for this condition that dermatology should be the quarterback and take ownership of this condition, and coordinate with primary care regarding comorbidity screening, you know, signs of diabetes or high blood pressure, things like that that occur more in people with HS that need to be managed as well just for the patient's overall health. There is a free patient app online, it's on the iOS store or the Android store called Papaya for HS. And basically patients can input medications that they've tried before, they can also input their symptoms and how they're doing. They can look for potential triggers. And I think this can be helpful because as a provider, it can sometimes be difficult to know if a patient's sitting in front of me how they were doing over the last three months since I've seen them. But with this app you can generate like a one-page PDF summarizing how their symptoms have been. So that's been really helpful.

Whyte: That's a really good point and it's also a good reminder. You mentioned earlier that patients should ideally keep track of any triggers between appointments that they think are, you know, exacerbating their condition or, uh, prolonging it. What other patient resources or organizations do you regularly recommend to your patients to help them better manage their condition?

Hsiao: Yeah, so I think there are amazing patient advocacy organizations out there and it really helps patients to not feel alone. So, Athena is president of Hope for HS, so definitely an amazing organization. Um, I actually help run one in the Los Angeles area. It's a chapter of Hope for HS and then there's also HS Connect, there's the International Association of the HS Network. There is quite a few HS Support groups out there th- where people can kind of take a look to see which resources are helpful or which community that they enjoy being a part of. And I find that to be really helpful 'cause so many people with HS tell me that they've never met anybody else with HS, and I think that's really isolating. And so hopefully with that people feel like they're part of a community and they feel less alone.

Whyte: Yeah. And we do know this is a chronic condition as, as you talked about at the beginning. Any upcoming developments in HS treatment that you're really excited about to share today?

Hsiao: I am very excited that there are multiple ongoing clinical trials for HS, and I think Athena had also mentioned before that she looked into trials. And for me, I really just want more medications to help patients 'cause right now the current ones that are approved are all injectables for example, but there's oral medicines being explored. There's even a topical medicine being explored for milder HS, and so we hopefully will see medications really being targeted to treat HS and why HS occurs. Higher levels of improvement and also a good safety profile, so that's really the hope.

Whyte: I wanna end with you talking to the HS patient that has had this condition for a while and may feel lost in the healthcare system, right? We're talking about the best case scenarios, how to assemble your team, find the right providers, have good follow up. But that can be a challenge at times. And people, as I said, can feel lost in the healthcare system with this diagnosis. What's your advice to them?

Hsiao: I think getting plugged in with a good derm provider is key. And if there's somebody you're seeing right now who you feel like maybe doesn't know HS as well or has sort of reached the limit in terms of what they're able to offer, I don't think it's wrong to go ahead and look to see if there could be another derm provider in your area or looking online at the HS foundation website. If there is a specialty clinic in your region that you're able to go to. Because for example, I know a lot of the dermatologists sort of in the Southern California region, so even if you're not next to me, I could work with someone who's local to you. And so I think in that way, reconnecting with the healthcare system, perhaps by finding someone that you do trust, can be helpful. And joining a patient support organization can be helpful too because maybe there's somebody who lives in your area who has a provider that they recommend.

Whyte: That's right. And you don't have to be alone in managing this condition. Dr Hsiao, I wanna thank you for taking the time to help explain how patients can best manage this condition and how there are effective treatments, and having this teamwork approach is the best approach in managing it.

Hsiao: Thank you so much for having me today.

Whyte: HS may be a chronic condition, but as Dr Hsiao explained, creating your own care team with the right specialists can dramatically improve quality of life and disease management. If you or someone you know is living with HS, please consider sharing this episode and encouraging them to seek specialized care. As we've discussed today, assembling the right care team, including dermatologists, surgeons, wound care specialists, and mental health professionals can make a tremendous difference in managing this condition. As always, more information on hidradenitis suppurativa is available at WebMD.com.

Special thanks to our guests, Dr Hsiao and Athena Gierbolini, president of Hope for HS whom you heard from at the top of the show. You can find out more about her work at hopeforhs.org. Thank you so much for listening to the special edition of Health Discovered Podcast. Please take a moment to follow, rate and review our show on your favorite listening platform. And if you'd like to hear about a particular topic in the future, please send me an email to [email protected]. I'm Dr John Whyte, the Chief Medical Officer for WebMD, reminding you that better information leads to better health. See you next time.