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Three illustrated women advocate for PsA.
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Advocate for Knowledge: Turning Diagnosis Into a Cause

How a lack of good information mobilized one volunteer to get involved and educate those in power.

When Lynne Breaux Arapis started to experience pain due to psoriatic arthritis (PsA), it was yet another complication for her mobility and joints. She had lived with osteoarthritis for most of her adult life prior to her diagnosis in 2015. However, unlike osteoarthritis (OA), which has a clear cause and effect, the seeming randomness of PsA and the indiscriminate times during which pain would occur brought on new levels of frustration.

Arapis’ active lifestyle helped explain the OA, but the sudden appearance of PsA in her joints came out of left field, despite having dealt with mild psoriasis earlier in her life. “The gremlins would suddenly attack,” she says, describing the chaotic nature of PsA.

Instead of growing discouraged, she has used the pain as motivation to join the fight against psoriatic disease on a legislative level so that others may benefit, too.

A Trusted Toolbox

Arapis capped off a successful career in the hospitality industry with more than a decade as president of the Restaurant Association Metropolitan Washington, a trade organization near Washington, D.C. During this time, she advised restaurants on legislative and regulatory issues, and has since retired in New Orleans. However, it’s not all rest and relaxation for Arapis, as she uses the skills she developed during her professional career for a more personal mission.

“For those in the hospitality industry, you live by the five Ws when running events,” says Arapis. “The problem with psoriatic arthritis is that there’s very little who, what, where, when and why.”

This lack of information and understanding, both in the public and on a federal level, propelled her to get involved with the National Psoriasis Foundation (NPF) and the American College of Rheumatology. She has generously donated both time and money to advocate for the awareness of all autoimmune diseases and for individuals dealing with the headaches that come with step therapy and Medicare.

She’s also motivated to help because she knows that she is relatively lucky – her PsA did not pop up until her career was winding down. For many, that’s not the case

“I’ve worked very diligently my whole life,” says Arapis. “I can’t imagine having had PsA earlier in my career. I talk to a lot of younger women who are still working, and it’s difficult because of the constant fatigue and sleeplessness.”

Arapis sees herself as an intermediary between the policymakers and the patients and caregivers. This role has also deepened her understanding of the disease, especially with the challenges the medical community faces. “I’m learning from doctors’ perspectives about the disease and how frustrating it is for them because of the ‘whys.’ Why is this disease here? Why is it growing in the population? Why do more women get it than men? And I’m also learning from their perspective how difficult it is to deal with government regulations, the price of pharmaceuticals and other insurance issues.”

The knowledge Arapis has gained over the past few years has fueled her efforts to inform lawmakers. One of her highlights was joining an NPF delegation that successfully lobbied the Washington, D.C., City Council to support the Specialty Drug Copayment Limitation Act. This bill, which became effective in April 2017, caps specialty drug copayments or coinsurance out-of-pocket costs.

She continues to fight what she sees as ignorance about PsA. “Psoriasis seems like a minor skin disease to the general public,” she says “But that line of thought is also extended to psoriatic arthritis. The takeaway from the public ends up being similar, with many saying, ‘Oh, well that’s just a minor joint disease.’ It most certainly is not.”

More Than One Way to Give

The NPF mission is powered by people who generously give time or money. We need both kinds of people in our community.

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