Unscripted - The AMCP Podcast: Vitiligo, Awareness, and the Role of Managed Care

Fred Goldstein  0:01  
Welcome to Unscripted, the AMCP podcast. A Look Inside managed care pharmacy. Listen in as experts explore the challenges, innovations and opportunities shaping healthcare for millions of patients. Welcome to this episode of unscripted, the amcp podcast. I'm your host. Fred Goldstein, this week's episode is sponsored by AbbVie Inc. AbbVie, we find answers that make life better for patients in our world. On June 25 we celebrated world vitiligo day. So I'm excited to be discussing an issue that doesn't get mentioned or considered very often, but is profoundly impactful for people. Roughly 1.9 million people are diagnosed with vitiligo in the United States. However, medical researchers believe the number of actual cases may be closer to 2.8 million people, because many patients go undiagnosed. Given the numbers, it's not really considered by a health plan, but as I said, it profoundly impacts patients. So joining me to discuss this is Tonja Johnson, who founded the beautifully unblemished vitiligo support group that is working to help those affected by vitiligo. Welcome Tonja, and thanks for all the work you do.

Tonja Johnson  1:08  
Well. Thank you. It's a pleasure to be here today.

Fred Goldstein  1:12  
It's fantastic to get you on. Why don't we start? Could you tell us your story? I know we discussed it before, and it was really fascinating and impactful.

Tonja Johnson  1:20  
So I was diagnosed with vitiligo and 2014 vitiligo is an autoimmune disorder that causes you to lose your pigment, and it's characterized by white patches on sometimes your extremities. Sometimes it can appear on your face first or your arms, your legs. Found my first spot in 2011 which I thought it was just age spots. That's what my mom told me, Oh, those are just age spots. Um, when you get a certain age, you get those. And so that's what I thought I was just age spots. And so then couple of years progressed, and then I started getting more of those age spots on my arms and my extremities, my legs. And I thought, This can't be just age spots. Something else has to be going on here. So I went to my dermatologist. She died. She thought it was vitiligo, but she wasn't quite sure. So she ended up sending me to a dermatologist who was an expert in vitiligo, and sure enough, I was diagnosed with little LIGO, and the journey began there. Left the office with a little bit of frustration, because I didn't know what it was, wasn't given a whole lot of information. And as I journeyed home, I realized whatever this is is invading my body, you know, it's taken over my skin. And so I started doing my own research and finding out if there was any support groups in the area. There was no support groups. And I thought, you know, after a couple of years of living with vitiligo, going through the Depression, just experiencing some challenges living with vitiligo, the mental challenges that I was facing, I've been dealing with this for 11 years now, almost 12, and my vitiligo has been so aggressive that I've lost over 90% of my color. I thought, if I'm going through this, there's got to be more people that are dealing with this. And so that's how beautifully on blemish was founded based on my frustration the lack of information, not having enough information, and just, you know, trying to cope with all the things that were changing on my skin. And you

Fred Goldstein  3:31  
discussed this issue of education, were you able to find things out there, or were there other national groups or things like that that you're able to go to?

Tonja Johnson  3:40  
So I was able to find a few things on the internet, Dr Google, but of my first reaction was, No, I need to find someone that is living with vitiligo that can kind of help me through this journey. And so that's when I found a support group out of Atlanta and connected with them and got more information, and that's how I was able to found beautifully on blemish based on the information that I had found from these other support groups.

Fred Goldstein  4:10  
And I know we talked some about your frustration with the medical care and things, and as you tried to find answers and get answers, how did you ultimately solve

Tonja Johnson  4:17  
that for me, I just decided not to go back to that dermatologist because of the experience, and later, I found a new dermatologist that would, you know, give me the medication, the topical cream. I took the topical cream for about six months, and it wasn't working for me, so I stopped taking that medication and just allowed nature to take its course.

Fred Goldstein  4:41  
So, and as you founded this group, and then I guess people, how did they find out about it? And sort of, how is the group functioning now? So how many people found out about it? Was by word of mouth. 

Tonja Johnson  4:49  
Um, individuals would see people on the street, or, you know, at church, and then they would say, hey, you know, there's a. Group for vitiligo, you know, let me give you that information. And so that's how the group became functioning. And now we are. We're all over the state of Florida, and we have individuals that are living with vitiligo and having a better quality of life because of beautifully unblemished

Fred Goldstein  5:20  
You mentioned some about the depression things, and obviously, as you think about this illness in individuals, it may impact their ability, I guess, at work or in the community and things. So what sort of resources are there available? Or do you typically find physicians who are willing to look more broadly at something like

Tonja Johnson  5:36  
this? So that's one of the initiatives that we're working on now is really, you know, speaking to the dermatologist, that when the patient is diagnosed, that they would give them information about support groups, that they would give them information about mental health, because the impact that the mental health has on an individual living with vitiligo, it can be Very challenging if you don't have sources and the resource. And so we have been working to provide mental health counseling for those individuals that are living with vitiligo, so that they can have techniques and tools to just make it through day to day functioning. 

Fred Goldstein  6:16  
And so as individuals are dealing with this illness, they should bring in ideas and questions to their physicians, and if they aren't getting the answers they're looking for, then seek to identify somebody who has that or perhaps find a support group like yours to find those physicians through you. 

Tonja Johnson  6:29  
Yes, we do refer individuals, especially in the Florida area. We refer individuals to dermatologists that we know have a background and treating patients with vitiligo. As far as the mental health counseling, we are working with some dermatologists that do offer you know information about mental health counselors in that area that they can turn to, because it's much needed in this day and age. It's needed because many of us, we deal with the challenges of going to work every day, we deal with the public, and we're trying to educate the community as well that when they see a patient with vitiligo, that they can recognize that this patient has vitiligo, and so then that limits the stigma and the stares that are associated with the vitiligo. So as

Fred Goldstein  7:19  
you think about this also, I know you ran dental clinics and things like that, so you were a healthcare knowledgeable, which many individuals obviously coming into the system have issues around health literacy and understanding how to navigate the system as well as understand the disease, etc. Do they typically come through a primary care physician, or they get referred to a dermatologist? Or how does that work?

Tonja Johnson  7:39  
 They can if the primary care knows what it is like, you know, right before they're diagnosed, but most of the time, they go straight to a dermatologist and they're diagnosed from a dermatologist.

Fred Goldstein  7:52  
And you also mentioned this idea of having mental health services. I know we've seen primary care practices expand out and begin to integrate mental health and behavioral health into their services, as well as care navigation. Care navigation, things like that. Are you seeing now the dermatologist doing this, where it's become more like perhaps with HIV management, where they take the lead in managing that patient for their overall condition, and dermatologists now doing that.

Tonja Johnson  8:14  
So we're not seeing it as much as we would like to see it, but as we are continuing to go and speak and present to these conferences where the dermatologists, like the AAD and many other conferences that we attend, we're bringing this information to the doctors to let them know how important it is for them to ask the question, how are you doing today? Because then that opens up the avenue for that person to be able to speak and be honest and say, I'm really struggling with my vitiligo. You know, I'm struggling with the changes that my skin is making, so we are working really hard to get that information into those dermatology clinics.

Fred Goldstein  8:54  
This episode is sponsored by AbbVie Inc. Our guest is Tanja Johnson, so Tanja, getting back to that question, how responsive Have you seen the dermatologists to this, to integrating these into their practice?

Tonja Johnson  9:05  
So right now, we're seeing that they understand the importance, and we're seeing a few more that are coming on board to ask those questions and provide that information for the patients that they're treating. I'm not sure about nationally, but I can tell you about Florida, we are seeing a lot of the dermatologists, even our nurse practitioners that treat vitiligo patients. They are giving them that information about mental health and letting them know that it is okay to seek mental health counseling.

Fred Goldstein  9:35  
Obviously, it's something we've seen for a long time, and you know, given the difficulties just to get into a mental health practice. I'm sure that makes it tough as well, to get yourself scheduled and things like that, and actually begin to get appropriate treatment or counseling.

Tonja Johnson  9:49  
And for us, we have mental health counselors that we work with. So our counselors, they're virtual, they can, you know, that they do telehealth, and so they can get. Appointment very quickly through our mental health counselors.

Fred Goldstein  10:04  
So your organization has actually created that system where you know where the physicians are that treat this, and then also have the behavioral health counselors, etc, through this other system that you can refer them into who understand the condition, who know how to work with individuals with the condition, etc, correct. Yes, that's fantastic. What would you say to people who are just newly diagnosed? What should they be doing?

Tonja Johnson  10:28  
One of my go tos is to get the support. Find a support system, whether it's someone in your family, your church, your workplace, but get that support always. You know, they can look for a support group, but not all the time. There's going to be a support group in the area in which they live, but if they can get one person in their family to be that support system for them, that is the greatest, you know, factor that they can have, and being able to have a better quality of life with the vitiligo.

Fred Goldstein  11:02  
And what would you tell individuals who don't have the disease?

Tonja Johnson  11:08  
Be patient. Ask the questions. Don't stare. Just ask, if you have a question about the vitiligo or what you see on a person's body, just ask. You know, it's very rude to stare, and a lot of times it's not done because people don't know. It's just that they don't understand what's going on with your body. And sometimes they think you're contagious, and we're not contagious. So we're just really, you know, want them to ask the questions, just come up to us and ask, not that we want to be the vitiligo spokesperson, but we want to be able to educate so that they have the right information, and so that when they see it again, they can recognize it. 

Fred Goldstein  11:47  
As you look at this journey you've taken in terms of your illness, how you yourself work with it, as well as founding this group that does incredible work. How far along are we? How much more do we have to do?

Tonja Johnson  11:58  
Oh, we have a lot more to do. Unfortunately, it's because the insurance companies are still labeling vitiligo as cosmetic. Those of us that are living with vitiligo, it is not cosmetic. So we still have a lot of work to do. There has been great strides that have been made there. You know, the first treatment, it's here for vitiligo patients. So we're excited about that, but there's still a lot of you know, youth that are being bullied in school. So we still have more awareness to bring to vitiligo so that we can end that stigma of, you know, it being one races disease rather than another race. But anyone can be affected by vitiligo. It doesn't matter you know your age, it doesn't matter your ethnicity, anyone can be affected by vitiligo.

Fred Goldstein  12:45  
Wow. And you mentioned, you know, the health plans and payers. So your message to them is,

Tonja Johnson  12:51  
our message to them is, please, please, please. Note that vitiligo is not cosmetic. It is a disease. It is an autoimmune disease that causes us to lose the pigment in our skin. So there's something that's going on in our bodies that is causing us to lose our pigment, and I'm thankful for the researchers that are out there doing the research work to try and find not just a cure, but to find medication that can help individuals regain their color. And so the other thing with that is really being able to educate, educate, educate, educate and bring awareness to vitiligo, because a lot of our patients are not able to even afford the medications, and so making it affordable for patients to be able to get the treatment that they need.

Fred Goldstein  13:43  
That's really just a fantastic way to end this. Thank you so much Tonja for your discussion and how you brought out the importance of understanding how this impacts people.

Tonja Johnson  13:52  
Yeah, and I appreciate you all, because that patient perspective is everything, because we live with it every day, and so being able to share our stories and explain, you know, some of the challenges that we face, living with vitiligo, not just vitiligo, you know, living with any type of disease that you may have, it's always good for someone else to hear your story and be able to understand, you know, and empathize what you may be going through.

Fred Goldstein  14:19  
It's really a pleasure. And thank you all for listening to this episode of unscripted the amcp podcast. You can find more information about the beautifully unblemished vitiligo support group@beautifullyunblemish.org and this episode was sponsored by AbbVie Inc. For more information about AbbVie, go to abbvie.com you.