Psoriasis, Step Therapy, Community, Advocacy
Congressional District: MA09
Chronic Pain, Immune Disease
Issues and Challenges
Jody has encountered: Step-Therapy / Fail First
I was diagnosed with psoriatic disease in 2003, mild psoriasis and moderate to severe psoriatic arthritis, and it took over 10 long painful years to get the proper diagnosis.
Over several years I gradually started to develop what I thought was thick, scaly, painful "dandruff" on my scalp and ears. Then I started to get itchy spots of dry skin on my legs and arms so I started using lots and lots of moisturizers but got little or no relief. When I started to develop small pustular rashes on my hands and feet that would not stop itching I finally went to a dermatologist and found out I have Psoriasis. Throughout this entire time I had been suffering lots of joint pain in my wrists, elbow, shoulders and knees and I went to several rheumatologists, orthopedists and primary care doctors but none could tell me the exact cause.
Finally, I questioned my dermatologist about the pitting and lifting of my nails and he asked me if I had joint pain and I told him that I had for several years. This is what finally lead to the diagnosis of my Psoriatic Arthritis. I never thought to mention my joint pain to my dermatologist as I didn't think it was related to my psoriasis. I just didn't know. This is why patient education and early diagnosis is critical.
Since diagnosis I have used over the counter anti-inflammatories and moisturizers, methotrexate, sulfasalazine; then to 8 different biologics. Some of the treatments work, for a while, then they lose efficacy. Some treatments didn't work at all, and in one instance, I got drastically worse. Also, if there is a side effect in the literature, I seem to experience it; rashes, infections, poor liver and kidney functions to name a few and all cause me to have to stop that treatment.
I have also suffered irreversible joint damage due to a poorly executed prior authorization process that took months for approval. I also have been subjected to using ineffective treatments due to the unreasonable step therapy process. These delays in proper treatment due to step therapy and inefficient approval process have caused me severe joint damage, weight gain due to extended us of steroids, loss of quality of life and loss of income due to my inability to work full-time. I am lucky that I have health insurance through my employer but as I get closer to retirement age I am uncertain about my ability to afford the same coverage.
As my disease progressed I searched for a way to connect with others that share the same difficulties and that is how I became involved with volunteering. In 2016 the National Psoriasis Foundation invited me to their annual Capitol Hill fly-in-day and to attend the FDA Patient Focused Drug Development Hearing on Psoriasis and that is where I was introduced to advocacy and became hooked. Being able to connect with my legislators and tell them my story first hand was so empowering, I actually felt I was making a difference. Since then I have volunteered as an Advocate with the National Psoriasis Foundation, American College of Rheumatology, Arthritis Foundation and the National Patient Advocacy Foundation. Advocacy had given me a voice to raise awareness and improve the quality of life for me and over 8 million people in this country that suffer from this disease.
The one positive result that has come from my chronic illness is I have become an avid traveler. I was one of those people who was waiting to retire to start traveling but about 8 years ago I decided I didn't want to wait for fear my psoriatic arthritis would progress to a point where I could not travel. So, I joined a travel club and I started to see the world. I have since been to many cities across the United States, countless Caribbean islands, Europe, Asia, Central America and even on safari in Kenya and I am not stopping anytime soon!
My Motivation and Inspiration
My motivation simple, I just have to look at my bent and swollen fingers, look in my closet and see my braces, various wraps, cane, ice packs, heating pads, oral and topical medications, and a Sharps container full of used autoinjectors and I am motivated to continue to advocate for everyone with psoriatic disease.
My inspiration is all the psoriatic disease patients and volunteers I have met that encourage me and amaze me with their stories, strength and perseverance.