Psoriasis Patient Advocacy: Why and How

My personality is naturally reserved — I’m an introvert. In my professional capacity I’ve done a fair amount of public speaking, teaching, and chairing meetings, but when I am in new situations or with unfamiliar people, I still can feel socially anxious.

Yet despite this I have become a psoriasis patient advocate. This year I began a new volunteer role with the National Psoriasis Foundation (NPF) as the Western Advocacy Committee co-chair.

Over the last six years I have joined NPF advocacy events both in Sacramento and Washington, DC, and look forward to another Capitol Hill Day, albeit a virtual event, this coming April. I’m grateful and excited for this opportunity to champion laws and policies that allow for greater access to care for those living with psoriasis and other chronic health conditions.

Through my experience I’ve come to understand that anyone can advocate for changes to health legislation that harms people with chronic illnesses, especially if you have a personal story like I do involving issues around step therapy. I found I could overcome my fears for this important cause.

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How I Became a Change Agent

I participated in my first advocacy event with the NPF at the California Lobby Day in April 2015. The organization had joined forces with the Arthritis Foundation and the California Rheumatology Alliance to discuss important health legislation at state legislators’ offices in Sacramento. While I looked forward to sharing my psoriasis story, I felt awkward and anxious.

When our team entered my state senator’s office, my mind went blank on the details of the health bills. At least I have notes, I told myself. Then I wondered if I had enough courage to “make the ask” of the senator to sign on to support us.

That nerve-wracking April day I came to appreciate the teamwork involved in the legislative meeting. I focused on telling my psoriasis story as it pertained to legislative health issues while others discussed the bills.

The NPF staff member who joined our team made the ask of the legislator. At the end of the meeting, we took a picture with the legislative staff member who met with us. Then we were off to the next office on another floor.

With each assembly and senate office meeting I felt more confident in sharing the impact psoriasis has on my life. I figured it’s my story and, if I can influence government policy to help others, then it’s more than worth it to push through my fears.

It helped to realize that legislators and their staff are just people like you and me. I discovered many of them could personally relate to our concerns about healthcare; some even shared a personal health story or their loved one’s challenges living with a serious health condition.

If a quiet person like me can become an advocate for the psoriasis community, anybody can.

RELATED: How to Navigate Health Insurance Changes With Psoriasis

The Need for Psoriasis Advocacy Hits Home

The importance of advocacy became personal for me when I was prescribed a new biologic a few years ago. It took me a few months to finally receive the medication. I learned from a letter from my health insurance provider that I needed to satisfy no fewer than five criteria for them to cover the cost, even though it is an FDA-approved drug on their approved list of medications.

The first two criteria were easy enough to fulfill: have moderate to severe psoriasis and a prescription from a dermatologist for the biologic. I figured that should be enough to authorize coverage for the medication.

But, unfortunately, it wasn’t. I also had to have tried and failed topical treatments such as ointments and creams, systemic pills or light therapy, and two other biologic injectables on the health insurer’s list. This method of controlling costs, often called step therapy or fail first policy, can lead to delays in getting prescribed medication and worse health outcomes.

Trying and failing a psoriasis medication can take months. For me, that could mean red, itchy, burning, scaling skin covering 95 percent of my body.

I just couldn’t understand: If my dermatologist prescribes a biologic because they feel it’s the best treatment for me at that time, why should I suffer increased disease activity and unnecessary emotional distress while going through those steps that most likely won’t be effective?

Thankfully, my dermatologist could document that I fulfilled all five criteria for insurance coverage, but it took much longer than I expected. In the months I waited for that biologic to receive authorization my psoriasis flared severely.

RELATED: Overcoming a Psoriasis Flare

My Ongoing Advocacy Efforts

Step therapy reform continues to be an important part of NPF’s advocacy mission. These reforms on both the state and federal level allow for exceptions to making a patient try and fail other medications before covering the one prescribed.

For example, the current California Assembly Bill 347 would allow for exceptions to step therapy and a quick turnaround for appeals. Exceptions include if the drug required to be taken first would likely cause an adverse reaction or not be effective, or if the patient is stable on the prescribed drug received from the current or a previous health insurance policy.

If this bill is ultimately signed into law, then many patients like me in California will have greater protections in place to receive the medications our healthcare providers prescribe. Other issues on the advocacy agenda include capping and spreading out out-of-pocket costs in Medicare Part D, making sure all copays count toward maximum limits, and securing government funding for psoriatic disease research.

Every Voice Counts

As a new advocacy co-chair, I look forward to welcoming and encouraging others to become fellow advocates as we work together with NPF staff. Every voice counts and yours together with others can truly make a difference.

To learn more about advocacy with the NPF, check out their website.

You can read more about my experiences in my blog for Everyday Health and on my website.

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