Leah Howard, JD: Advocacy in Chronic Skin Conditions

Earlier this week, AbbVie hosted a media roundtable event, Science of Skin: The Psychosocial Impact of Chronic Skin Disease, featuring insights from 5 expert, patient, and advocate panelists. Science of Skin is a multi-year AbbVie initiative aimed at addressing important issues for patients chronic skin diseases through the elevation of diverse voices in dermatology.

The discussion was hosted and moderated by television personality and interior designer, Nate Berkus, who has now shared his private journey with psoriasis. Panelists included Alexis Smith, eczema patient, influencer, and community advocate; DaQuane Cherry, psoriasis patient, community advocate, and artist; dermatologist Mona Gohara, MD; dermatologist and psychiatrist Evan Rieder, MD; and Leah Howard, JD, psoriasis patient, president & CEO of the National Psoriasis Foundation.

Howard spoke with Dermatology Times® following the panel discussion to discuss the relationship between chronic skin conditions and mental health, self-advocacy, and the role of organizations in advocating for patients.

Transcript

Leah Howard, JD: My name is Leah Howard, and I am the president and CEO of the National Psoriasis Foundation [NPF]. I've actually been at the NPF for the last 11 years and been president and CEO for the last year.

Dermatology Times: What motivates your advocacy for mental health in chronic skin conditions?

Howard: I think psoriasis impacts all of us in different ways. I say all the time that each and every journey with psoriasis is different, and I think my journey's been my own personal experience for the last 20 years, but I know talking to so many in our community, what causes one person's disease to progress to something that's more severe or what causes someone to go on to develop psoriatic arthritis, those are questions we don't really know the answer to.

I think for me and for the NPF, our mission is both to drive efforts to cure psoriatic disease as well as to improve the lives of each individual that lives with it every day. In the last couple of decades, we've learned so much about psoriatic disease, and so there's a lot of hopefulness from that standpoint that science has come as far as it has, and that we know that there are great treatment options available today and so many ways for health care professionals to partner with individuals that live with psoriatic disease to get their health better.

But one of the things that we've also learned along the way is the risks for those of us that live with psoriasis for developing a number of comorbidities, other health conditions, that are related to psoriasis and psoriatic arthritis. And one of those things is issues that impact mental health. When we talk about supporting individuals in the psoriasis community, we're really coming at it from the perspective of supporting the whole health of each person living with psoriatic disease, and so of course, advocacy and research and education around mental health is a really big part of that.

Dermatology Times: What has or is the National Psoriasis Foundation doing to advocate for mental health?

Howard: There's a number of things that we do at the foundation along these lines. I think the first thing is education, really making sure that both individuals living with psoriatic disease as well as health care professionals, understand the way psoriasis and mental health are connected, both from a science, clinical standpoint, as well as what it means to carry the burden of a psoriasis diagnosis and ways that that might impact someone's mental health on a day-to-day basis, just living with the disease. We do a lot of education programs, trying to share information with both of those audiences about all the things that they should have in mind in order to again support, ways of improving and helping to improve someone's mental health.

From an advocacy standpoint, a lot of our work is really about speaking out to individuals in the community and letting them know that first of all, they're not alone. I think there's a lot of stigma that comes with living with a disease like psoriasis, and many people in the community, we heard this in the panel discussion [Tuesday], feel very much alone; they feel like they're the only one that's going through that challenge, or they're the only one that's having that issue. A lot of what we try to do is to bring stories from the community forward so that they can see themselves reflected in someone else's journey and they get that sense, first of all, that they're not alone.

The second thing is then to give them avenues to connect with other people. We have a patient navigation center that serves about 17,000 individuals a year. It's all free, you can call with any question any issue, and one of the things that our team of navigators does is to connect people with others in the community. One of the programs that does that is a program that's called one to one, which is an opportunity for individuals that contact us to get matched with a mentor, someone that has psoriasis and has gone through some training, some education, from the foundation to kind of be a coach, a peer mentor, to another person living with the disease, and you can have one conversation, get get your questions answered, and that could be it, or you can develop a long-term relationship with someone, and they can really become a great resource and support for you.

Our goal with each of these tools, and each of these resources, is to partner with the individual living with psoriatic disease, to develop that confidence and comfort to take that next step in their health care journey and move to a place where their health is better, give them the confidence to have the conversation, for example, with their physician about their quality of life and the issues that they're struggling with so that they're able to come up with a treatment plan to tackle the issues that they're going through.

The third thing I just want to mention, which is less about advocacy and more about mental health long-term, is research. The National Psoriasis Foundation funds about $3 million a year in research, and one of the areas that we've invested in over the last few years has been mental health research, recognizing there is this gap, and there are these significant challenges faced by our community when it comes to mental health. So last year, we funded a mental health research project. We just announced in the last month that we have funded 2 more research projects in mental health, and so I invite people to connect with the foundation website and learn more about the research that's being supported by the National Psoriasis Foundation geared specifically to mental health prospects.

Dermatology Times: How do conversations like these further dermatologic care?

Howard: I say all the time that folks that are nervous about advocating for their own health or speaking out about their health care for the first time really shouldn't be because you're an expert, and each of our psoriasis journeys are unique. [Tuesday's] panel was so wonderful because it brought patients and providers onto the same stage and put them on equal footing, having a conversation about psoriatic disease. We got to hear from the experts about clinical care and the science of psoriasis. And as Nate said, we got a masterclass in psoriatic disease from Dr. Gohara. And then, from a patient perspective, we got to hear about the real life, lived experience.

I think one of the things that's so powerful is when you bring forward the patient experience, obviously it personalizes what's in the scientific textbook, certainly, but I think it also really gets across the idea that you can't take a one size fits all approach to any one disease, any one patient, and what we see, even in a space like ours where you have lots of treatment options, and lots of different types of treatment plans that you can come up with for each patient, not every individual is going to respond the same way to every treatment, and not every plan is going to work well for one person as it might for another.

I think the opportunity to really elevate patient stories and patient perspectives gives us an opportunity to have better partnerships between patients and providers. I think that's where the magic happens, when you bring together the patient and provider and give them an opportunity to collaborate and build the plan; I think you have just greater long-term success, and obviously, that's what we're all here for, is to get that individual to a place of better health. Certainly, that's what health care professionals that support our community want to do. And to do it, they really need the opportunity to engage in conversations and listen to patients. It's hard when you don't have a lot of time during a doctor's visit, but we really try to empower patients to have really productive conversations, give them tools and good questions to ask, and how they can prepare for their appointments so that they can be as effective as possible in that conversation.

Dermatology Times: As a psoriasis patient, what advice would you give to patients when it comes to self advocacy?

Howard: The first thing I would say is speak up. Share your journey, share your perspective, talk about what matters to you. We know that what matters to one person is not necessarily the same as what matters to another person. Earlier this year, we had an opportunity at our National Psoriasis Foundation Gala to honor a college student who's been really active in the NPF since since he was a kid. I know from talking to college students, for example, what matters to them and their treatment plan is very different from someone who's in a different stage of their life, maybe is moving all across the country every few months, are really busy with a professional job or managing kids, all those sorts of things. It's so important for people to speak out about the truth of where they are in their journey, what's important to them, and what they're looking for in their care.

The next thing that I would say is, keep speaking out until you feel heard. As Dr. Reider shared, every one of these conversations is an opportunity to find that good fit between you and your health care provider, and if the first one you connect with isn't the right one, come back to the National Psoriasis Foundation provider directory, find a different provider in your area, go interview another expert, because we really want you to ultimately have that partnership that's going to get you to the best health you can achieve, and you need to feel comfortable speaking up, sharing your challenges, your needs, with your provider.

The last thing that I would say is be honest in those conversations. As we started with here, I think so many people do feel so alone in their journey, and they're hesitant to express the way psoriasis is really challenging them, or even some of the symptoms they're experiencing. We have heard from a lot of individuals over the years, for example, about their hesitancy in talking about genital psoriasis, and they feel like, 'I don't want to bring that up,' and not every provider asked about it. So if you're not talking about it, there's really a missed opportunity to address that area where psoriasis is presenting itself on you. I think getting to a place where you're comfortable with your provider, being able to be vulnerable, sharing those things that you maybe don't want to talk about with others, is really the best way you're going to arrive at a treatment plan that's going to work for your whole health.

The other thing that I really loved about [Tuesday's] panel was having Nate there sharing his journey and his experience and bringing his public platform to that conversation. At the National Psoriasis Foundation, we spend a lot of time talking to members of our community about the truth of psoriatic disease, and everyone gets different information from different places, so having him there, really bringing others into the conversation and having an opportunity to share both accurate and actionable information with a wider audience, was really exciting for us, and it was a privilege to get to participate.

[This transcript has been edited for clarity.]