impacted where it affects the skin, that same area of your immune system can also affect your joints.
Q: What do you do daily for this cause, or how do you advocate for others and be the voice for others who maybe can’t advocate for themselves?
A: I am involved with the community in several ways:
- Working with National Psoriasis Foundation.
- I help with a lot of research initiatives locally.
- I’ve also done mentorships in various capacities.
- A blog where I highlight my own story, stories of others, issues that we are currently facing in the community, and solutions to that.
Recently I had a mom reach out to me on Instagram about her daughter being newly diagnosed, and her daughter just so happened to go to a local college here. So, I could meet with her and talk about my experience and then provide her with additional resources to help her condition.
RELATED: 3 Lifestyle Tips To Help Manage PsA Fatigue
Q: Why do people of color experience additional barriers? With psoriasis specifically, and then in general?
A: I think there are various reasons people of color face unique challenges. One, there is an issue in healthcare providers’ knowledge of how this disease presents in people of color. When we talk about schooling, a lot of times, when you look up pictures of people with these conditions, you don’t see a lot of Black and brown people represented. I work with many research initiatives, and we have to review clinical trials. Sometimes in those clinical trials, they’re not very diverse. If you don’t necessarily have a lot of diversity, then it’s going to be hard for you to understand and learn how this disease impacts people differently. Then another way is their lack of knowledge; it is not something that is being given to them as a norm.
For Caucasian people or lighter skin people, this disease shows up as red or pink plaques. Where for a person like me with brown skin, it is going to show up as purple or brown. Suppose the healthcare provider has not had enough experience with people of that skin tone. In that case, they might not necessarily recognize it as psoriasis, and it could be misdiagnosed as something else. Another issue is limited access to healthcare providers. People of color face many barriers regarding transportation, insurance coverage, and work schedule flexibility. It makes it more difficult to see a physician and do some of the required treatments. For example, phototherapy requires you to go to the hospital anywhere from three to five times a week.
Limited access to treatment is another issue. People of color have less access to care and are typically undertreated compared to our white counterparts. Especially when it comes to biologics. Biologics are injections that you can use to regulate the part of the immune system causing psoriasis. And it’s almost 70% lower among people of color with psoriatic disease. And these are very innovative treatments that can put people in remission, so they’re needed. But we don’t have access to them like other people. So that’s a problem, and what I have been seeing with my advocacy is being involved in the community in different ways.
Another issue is just mistrust in general. And I do want to point out that clinical research, as I mentioned it is a challenge. Even if the doctors and researchers are open to and trying to recruit people of color to be in these clinical trials, sometimes there’s a struggle because people just don’t trust it enough to participate. So that’s why I try to encourage patients and educate them on what it means to be a part of clinical research so that we can get more representation.
Q: So you also work with Determi-Nation? What is that like?
A: Yes. Determi-Nation is a healthcare movement. It’s by Janssen, and I work with patients, advocates, healthcare providers, and researchers, and we’re committed to supporting more quality medical care for people of color. So we have been figuring out what the problem is and what solutions we can provide. And we do have a couple of solutions. With that, we just came out with a program that has medical students from SUNY Downstate serve as patient navigators. They help connect people of color with psoriatic disease to important resources. And then we also have a resource that was developed by our members called Beyond the Textbook, and that helps to educate healthcare providers on how psoriatic disease presents and people of color and how to navigate conversations with patients in a way that they can feel heard, that they connect, and that can build morale and trust between patients and healthcare professionals. We’re looking forward to seeing the difference that makes.
Q: Ok, nice. With all this great information you guys are compiling and getting together, how do you get it out to people so that they have readily available access to like these resources?
A: Yes. You can go to our website and learn more about it. We utilize our own networks along with social media. We’ve been on a lot of different platforms. We just recently had an interview with Essence, which went really well. So there are a variety of ways that we are connecting this information with patients, researchers, and healthcare care providers that need it.
Q: And if there were people who also wanted to get involved, like volunteers, do you guys have a network or a way for people to do that? Or is that kind of not a thing yet, or what does that look like?
A: Yeah, all these resources that I mentioned, as well as additional information as to how you can get involved, is on the website too.
Q: With your journey of psoriasis and everything, what are some things that you learned along the way that help you personally, and then in a general sense, could help other people as like a foundation? Or maybe some skincare routines that help you out. If someone started here, how could they move forward trying to find personalized ways to help themselves specifically?
A: Well, connecting with a network of people who have this disease, who work to find solutions for these different issues that I mentioned, has helped me tremendously, and just advocating for myself in maintaining hope when I’m struggling with my psoriasis. Also, finding a doctor who understood my needs. And I’ve been with my doctor for the last seven years. I met her through the National Psoriasis Foundation, and she was the first doctor who helped me get a biologic that works for me in clearing my skin and helps me gain