Stepping Out of My Comfort Zone for Psoriasis Action Month

August is Psoriasis Action Month, and this year, I went out of my comfort zone to advocate for access to psoriasis treatments. It all started with an email from the National Psoriasis Foundation (NPF) advocacy department.

This year, Psoriasis Action Month coincided with a congressional recess, when our federal elected officials take a break and often return to their home states.

In July, the NPF sent an email inviting its members to consider setting up meetings with U.S. representatives and senators at their home offices to discuss several bills that could affect the lives of people living with psoriasis. I’ve participated in congressional meetings in the past but rarely alone and not for a few years.

At first, I let that initial email get buried in my inbox. I gave myself excuses for not responding: I’m busy with growing responsibilities at work. Someone else who is more eloquent can attend these congressional meetings. I don’t know the bills that are before Congress that well. And what difference can one person make?

But when I came back to the message a couple of days later, I imagined a world in which those bills became law. They would give those of us living with chronic illnesses such as psoriatic disease greater access to potentially life-altering medications.

I decided to set aside my reservations and take action.

Receiving Support Every Step of the Way

A statement that the NPF health policy and advocacy director wrote in the email also helped me overcome my multitude of excuses. She simply said, “Our team will be here to support you every step of the way and make sure you have everything you need for a successful meeting!” That message helped to allay my anxiety around doing the meetings by myself.

A follow-up email listed bullet points detailing what I needed to do next. In my reply to the NPF director, I expressed concern that one of my senators does not have an office in my area, but I said I could contact the other two quite easily. That would be no problem, she wrote back.

Shortly after, I received another email with useful attachments. It included a personalized document on how to schedule the meetings and information on the three bills I would discuss with the congressional offices.

As it turned out, I didn’t speak directly to either of the two members of Congress whose offices responded; I spoke instead to members of their legislative staff.

Asking for Exceptions to ‘Fail First’ Policies

My first meeting came more quickly than I expected. After realizing I needed to call the local office in my town instead of the Washington, DC, office, I made an appointment for the next day with Representative Mike Thompson's office.

Representative Thompson’s field representative, Will Duncan, spent almost 30 minutes with me. The meeting began with me asking if he was familiar with psoriasis. I then shared my experiences living with it. He listened attentively while taking notes.

I then jumped into the first bill, asking that the representative cosponsor the Safe Step Act. The bill allows for exceptions to step therapy, for which insurance providers require patients to try and fail one or more medications before receiving the one prescribed to them by their physician. This bill gives patients exceptions to this policy.

One of the negative impacts of step therapy is a delay in treatment. A few years ago, when my dermatologist prescribed a new biologic, she had to document my failing several classes of psoriasis medications before I could receive the new one. The approval process took four months, during which time my skin worsened.

I appreciated how carefully Duncan listened to my story. Before moving on to the next bill, I gave him a one-page handout on the Safe Step Act for the representative and his office to look over.

Making Copay Assistance Count

I next asked for the representative to support the HELP Copays Act. This legislation would require copay assistance, such as from the drug manufacturer, to count toward a patient’s out-of-pocket expenses. When insurance companies don’t count that financial assistance, they are essentially getting paid twice.

A few years ago, I had a drug manufacturer pay thousands of dollars for my biologic injectable medication. After the assistance payments were credited to my account, I no longer needed to cover copays and coinsurance for the rest of the year, because I had reached my maximum out-of-pocket expenses.

The next year, however, my health insurance provider implemented a copay accumulator program, which meant that the drug manufacturer’s copay assistance no longer counted toward my insurance deductible or out-of-pocket maximum. The insurance company received thousands of dollars directly from the drug manufacturer, while I continued to pay out-of-pocket costs for medications and doctor visits.

Duncan hadn’t heard about this insidious insurance practice and promised to pass along the information to the representative for his consideration.

Seeking Fair Reimbursement for Infusion Therapies

The final bill I asked the representative to support is the Protecting Patient Access to Cancer and Complex Therapies Act. This legislation would allow physicians‘ offices to get reimbursed for infusion treatments with an amount that would reduce potential financial strain on them. If doctors’ offices stop providing certain medications due to lower reimbursement amounts, patients might need to drive further or even delay treatments.

Wrapping Up My Action Month Advocacy

I thanked Duncan for his time before my final ask: Could we take a photo together with the congressional seal on the door? After taking the photo, I walked out the door toward my car on the downtown main street feeling grateful for the opportunity to advocate for people like me living with a chronic condition.

The following week I enjoyed a positive virtual meeting with California Senator Adam Schiff's legislative aide in Washington, DC.

Senator Alex Padilla’s office didn’t get back to me to schedule an appointment, so in the end I met with two out of three of my congressional leaders.

I’m glad I said yes to the invitation to advocate for congressional bills during Psoriasis Action Month. The NPF did support me throughout the process, even carving out time to explain one of the bills to me over the phone.

Now I’m hoping they become law in this Congress or when the next Congress convenes in 2027.

If you’d like to learn more about psoriasis advocacy and consider taking action yourself, be sure to check out NPF advocacy’s website.