Storming Capitol Hill to Make a Difference

In early April 2019, I had the extreme honor to attend Capitol Hill with the National Psoriasis Foundation (NPF) to advocate for the psoriatic disease community. This was the third time I received an invitation from the organization, and I was just as excited this time as I was the first time I attended with my husband and son in 2011.

This year’s fly-in proved to be amazing! I got to meet new patient advocates from across the country, I shared my story with policymakers on Capitol Hill, and I felt empowered to advocate for the 8 million patients in the United States with psoriatic disease.

“Over 32 advocates from as far away as Alaska convened in D.C. to share their stories and participate in the legislative process. We are proud of the fantastic job all of our advocates did to elevate the patient voice about what it’s like to live with psoriasis and psoriatic arthritis,” said Patrick Stone, vice president of government relations and advocacy at NPF. “Within a week, we are already seeing direct results from their passion.”

The difference we wanted

Specific advocacy topics during these fly-ins have changed over the years, but one thing remains constant: improving the outcome for psoriasis and psoriatic arthritis patients across the country.

Divided into small groups, our delegation spent a full day meeting with 60 senators and representatives from across the country. For me, I was grouped with another advocate from Michigan and another from Minnesota. The three of us, along with an amazing NPF staff member, met with seven policymakers or members of their staff to advocate for better health outcomes for those with psoriatic disease.

We started by telling our stories and educating those in the meeting about psoriatic disease. We even met staffers with family members who suffered from psoriasis. It was a great way to connect our stories to the bigger picture. After all, nearly 8 million people in the United States have been diagnosed with psoriasis, and approximately 30% of those have psoriatic arthritis.

We specifically had three “asks” for the members of Congress, all of which are bipartisan and have support from other health communities.

Ask 1: Support for research funding

In 2013, the Center for Disease Control and Prevention (CDC) identified opportunities for expanded research on psoriatic disease in its public health agenda for psoriasis and psoriatic arthritis. It specifically noted key research gaps and the need for effective strategies to better equip patients to manage their health.

In order to put these findings into action, we asked our members of Congress to support $1 million in funding to the CDC to improve the lives of those living with the disease and advance efforts toward a cure.

Since simply having psoriasis makes a person more likely to develop other diseases, such as heart disease, diabetes, Crohn’s disease, and depression, this funding would specifically be used to support research on the connection between psoriasis and psoriatic arthritis and these many other health conditions, also known as comorbidities. Enhanced knowledge could lead to targeted interventions to help people with these diseases better manage their care.

I was very excited to hear that both Michigan senators signed a letter of support for this $1 million in CDC funding about a week after returning from Capitol Hill. Advocacy works!

Ask 2: Support federal step therapy reform

Step therapy is a term used that describes when a patient must try and fail one or more medications before insurance grants coverage for the drug that your health care provider originally prescribed. For many with a chronic health condition, including psoriasis and psoriatic arthritis, the delay in access to the right treatment can make the disease worsen with permanent damage.

Currently, less than half of the states have guardrails on step therapy, and unfortunately, Michigan is not one of the states protecting patient rights in this area. Having a federal standard will make it consistent across the country.

It’s important to note that the federal legislation would not ban step therapy, but it would put patient-and provider-friendly guardrails up to ensure patient safety and transparency on the denial process for both patients and providers.

Ask 3: Re-authorize PCORI

In 2013, Congress authorized the Patient-Centered Outcomes Research Institute (PCORI) as a private, non-profit research institute dedicated to studying the effectiveness of treatments, with the goal of allowing patients and doctors to choose the treatment that best manages their condition.

For example, NPF partnered with research hospitals to have PCORI research the effectiveness outcome of home light therapy versus doctor’s office light therapy for psoriasis patients. In rural areas where a patient might need to travel an hour or more to get to the doctor’s office, light therapy in a dermatologist’s office is challenging, especially when balancing family obligations, work hours and other commitments.

Currently, many insurance companies deny home light therapy because there is just little to no data to show that it is effective. This new PCORI study aims to provide data in this area.

PCORI’s deadline for re-authorization is September 30, 2019. Advocates on Capitol Hill asked members of Congress to support this to ensure patient-treatment research can continue.

Get involved

You can help further these actions and make a positive change on Capitol Hill. Sign up for NPF advocacy email updates. NPF will ask you to contact your legislators to share ways they can help patients like you in the psoriatic disease community. It’s easy and only takes a few minutes to make such a BIG impact.