Expanding Phototherapy Research and Access Through Self-Advocacy

Jordan Ellefsen is a proponent of phototherapy as a treatment option for psoriasis, and he has tried just about everything: over-the-counter creams, steroids, biologics and phototherapy.

While the 65-year-old retired salesperson in Madison, Wisconsin, had some successes here and there with other treatment options, phototherapy is his favorite. Ellefsen recalls his first exposure – pardon the pun – to light therapy about 15 years ago, and for him, it just worked. No creams to remember to apply, no expensive pills to get refilled – simply three lunch hours a week in the health care provider’s office.

“It was a game-changer for me,” says Ellefsen. “It was the first time in years that I felt comfortable in shorts and short-sleeved shirts.”

He loves the benefits of phototherapy, especially how much easier it is on his wallet. As he sees it, medications fluctuate in price and you have to continue paying throughout the treatment, but having a home phototherapy unit is a one-time expense that will be there whenever you need it.

Ellefsen was excited when he learned about the LITE Study – a research initiative launched in 2017 that studies the effectiveness and safety of home-based phototherapy versus office-based phototherapy for the treatment of plaque or guttate psoriasis.

Funded by the Patient Centered Outcomes Research Institute, the LITE Study is a collaborative effort led by the National Psoriasis Foundation (NPF), Joel Gelfand, M.D., professor of dermatology at the Perelman School of Medicine at the University of Pennsylvania, and Kristina Callis Duffin, M.D., professor of dermatology at the University of Utah. The study’s goal is to provide data necessary to better inform treatment decisions for hundreds of thousands of phototherapy candidates, potentially further supporting phototherapy as a safe and effective treatment option for home care and expanding access.

Ellefsen saw this study as a way to increase knowledge about phototherapy as a treatment option. He wanted those around him with psoriasis to take part. The only problem was that the handful of clinics participating in the study were nowhere near where he lived.

So he took matters into his own hands. Ellefsen has volunteered his time with NPF on advocacy issues like step therapy reform. He saw the LITE Study as an opportunity and put his advocacy skills to use. With the help of the NPF team, Ellefsen began to drum up support in his area.

“I started to correspond with a doctor at the University of Wisconsin, where my personal [dermatologist] is from, and informed them about the study,” he says. “They were then in touch with [NPF chief scientific and medical officer] Stacie Bell, and we’ve gotten the ball rolling.”

Since being alerted to the research initiative, the University of Wisconsin has taken steps to become one of the handful of nationwide clinics taking part in this important study.

Ellefsen is proud of the work he has done to extend this study to his portion of the map. “There’s people I know that have to drive hours a few times a week for [photo-therapy] treatment, which can really take a toll,” he says. “A study like this that could result in more in-home [phototherapy] units will be incredibly beneficial to a lot of us in Wisconsin.”  Ellefsen has since joined the patient stakeholder committee to continue to support the study by offering the patient perspective and guidance.