Advice for NrAxSpa Patients & Future of Treatment

Tiffany Westrich-Robertson: I think the best advice that I have for patients that are living with these diseases is that it’s not the end of the world. Even though we go through this, “who am I now” phenomenon, that little bit of an identity crisis, especially because they’re typically young onset, just remember, it’s really another way of living in the world. It’s not the end of the world. There’s a lot of adjustment that happens. But once you figure it out and you figure out your rhythm, then it becomes your new self and your new identity. And just make sure that you’re constantly reaching out to other people and communicating, because you’re not alone. Even though you might think you are, you’re not alone. So that’s really my best advice.

My ideal would be that it is accepted to get a code, an official disease code. Right now as of this moment there is no code, and that is an issue for several reasons. One being that a doctor can not just prescribe a biologic for nonradiographic axial spondyloarthritis [nrAxSpa]. And like in my case, we have to still keep rheumatoid arthritis on. It would be nice to be able to have that. But also coding is important for tracking, for post-market surveillance, for understanding how patients are responding to biologics. So I’d like to see that happen. But also as a nonprofit, we do a lot in innovation and research. We’re actually award winners for some of our projects in utilizing the patient’s voice in research.

One of the things that we are focusing strongly on, and it does include nonradiographic axial spondyloarthritis, is understanding the similarities and the differences between that and ankylosing spondylitis and some of the other similar diseases so that we can begin to differentiate and have earlier detection. So creating earlier detection modules is a big focus for us, and I think that it will help with the nonradiographic axial spondyloarthritis patients in the future.

One of the things that I hope will happen is that when patients present with these symptoms, historically when biologics were a little less advanced, so I’m just talking a decade ago, and not even that long ago. But a lot of rheumatologists will tell patients, “Well, it doesn’t really matter what your diagnosis is, because the treatments are all the same.” And that was very true, and it’s still sort of true because insurance dominates the biologic you’re going to be on, at least to a degree.

What I’d like to see happen is rheumatologists recognizing that there are differences. For example, I was on a biologic that wasn’t indicated for ankylosing spondylitis, or spondylitis diseases, and I suffered for a while because I wasn’t on the best biologic for me. So I’m hoping that the rheumatology community will start to really focus on precision medicine, which they are, but I’d like to see that moving forward, and understanding which biologics best match which patients. Because I think that that’s where we need to go.

None of the diseases have cures. But there are several of the diseases that don’t have biologic treatments. For example, adult onset Still disease. That’s one of the prime focus diseases that we have at our organization that’s an autoinflammatory disease, and arthritis is a major component, often misdiagnosed as rheumatoid arthritis also. And they have recently had some biologics that are indicated for them, but it’s just recent. So in the last couple of years. And then there’s other diseases that are still there, but they don’t have an exact biologic that works for them. They’re kind of sharing on which biologic matches best. So it’s nice to see that there’s progression with that. But there are many, especially in the rare community, there are many autoinflammatory diseases that do not have biologics specifically indicated for them. So there’s some work to do still.

The most promising progress is there’s a lot of movement and identifying specific targets and how it works with the mechanisms in the body. And I think everybody’s on the right track, and that’s a good thing. So I’m really hoping that the work that we do at IFAA [International Foundation for Autoimmune & Autoinflammatory Arthritis] will be able to help change the stories of tomorrow so they don’t have to be the story that I necessarily went through of delayed diagnosis. So, we’ll hope.