You Yes, You! Can Become a Psoriasis Patient Advocate

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.

How I Became a Change Agent

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.

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.

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.

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 ishonest and on my website.

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