Every Monday, Wednesday, and Friday, Jami Peterson used to travel an hour to her dermatologist to sit for 70 seconds in a phototherapy booth. Then she’d turn around and go home.
The pretty, dark-haired 22-year-old, who lives in Tennessee, was diagnosed with moderate guttate psoriasis at age 18 after a persistent strep throat infection — a common psoriasis trigger. The ultraviolet B (UVB) light treatments helped smooth out and lighten patches of psoriasis on her abdomen and legs. Phototherapy was the best treatment she’d found in her four years with the disease, but her insurance company would only cover six months of treatment.
“After that, I would have had to spend about $600 a month [for treatment],” she said. “I was a college student; I couldn’t afford that.”
She felt like she was out of options. Jami tried medicated creams, but they stopped working after a while and they, too, were expensive. She also tried methotrexate, the immunosuppressant drug, but the regimen scared her.
“I would take it every single Monday and get a blood test every single Tuesday to make sure it wasn’t killing me,” she says, adding that the stress worsened her psoriasis.
Jami says her dermatologist never told her about at-home phototherapy, which would’ve been less costly than creams, outpatient phototherapy, and systemic drugs in the longterm. She learned about at-home phototherapy while conducting her own research on psoriasis treatment and, in the process, discovered information on other self-administered options like diet change and UVA tanning.
At-home phototherapy comes in many forms, from small light boxes to full-size phototherapy booths. Steven Feldman, M.D., a psoriasis expert and researcher at the University School of Medicine in Winston-Salem, North Carolina, says Jami’s experience is not unusual.
“Some doctors weren’t trained to [prescribe home phototherapy],” he says. “And insurers don’t always realize the practical benefits of the treatment.”
A practicing dermatologist, Dr. Feldman says he’s written to insurers explaining the costs of covering an at-home phototherapy box versus thousands of dollars for in-office phototherapy or biologic drugs.
“This is a really easy, fabulous way to help people with psoriasis and you can get massive improvement, and safely, but at a high cost,” he says. “Right now, it still costs a patient more to have home phototherapy than to use an injectable.”
Dr. Feldman has studied at-home phototherapy for 25 years and he calls it a “win-win for everybody. Patients do better and the insurance companies do better.”
The risks of UVB phototherapy, he said, “are really quite minimal. There’s probably some risk of aging the skin, but as long as you protect the face [with sunscreen], then I think there’s very little risk of skin cancer.”
He adds that in-office PUVA treatments — which combine oral psoralen and ultraviolet A radiation — do come with an increased risk of skin cancer. All phototherapy treatment options come with burn risks.
What the research says
But is at-home phototherapy as effective as office phototherapy?
Dr. Feldman cites a small randomized, controlled study from the Netherlands that pitted at-home UVB phototherapy using a stand-up light booth against office UVB phototherapy. “It showed that the efficacy was about the same,” he says.
So why don’t more people know about it, why isn’t it prescribed, and why don’t insurers cover it, especially when in-office treatment is covered and prescribed?
Researchers at the University of Pennsylvania are trying to figure that out. A five-year study, which was announced last month, has been approved for $8.6 million in funding from the Patient-Centered Outcomes Research Institute. The goal is to determine whether at-home phototherapy works just as well as in-office phototherapy.
Principal investigator Joel Gelfand, M.D., vice chair of clinical research and medical director of the dermatology clinical studies unit at Penn Medicine, said the U.S. trial will have a broader reach than the European one.
“What’s very unique about this trial is there are usually 30 or 40 criteria that allows someone to enter study,” he says. “This is designed to be a very pragmatic, real-world study.”
Patients of all skin types and disease severity may participate in the study at dozens of to-be-determined sites across the United States. The phototherapeutic equipment will be provided by Ohio-based manufacturer Daavlin.
The National Psoriasis Foundation (NPF) serves as a patient partner organization for the study and will help Dr. Gelfand and his team recruit participants.
“In the case of skin psoriasis, phototherapy is a highly efficacious treatment,” said Michael Siegel, Ph.D., NPF’s senior vice president of research and clinical affairs.
Dr. Siegel, who sits on the study’s executive board, says the NPF is responsible for engaging patient communities and disseminating study results to insurers as well. A comparative study is a high priority for NPF’s community, he says.
Jami Peterson isn’t waiting for the study results. She’s eating better and she’s treating herself with UVA rays from a tanning bed at her local gym.
According to a 2015 review of scientific literature, both UVA and UVB can help clear psoriasis plaques, however a patient must spend much more time exposed to UVA for positive results. UVA exposure also poses a higher risk for skin cancer.
Peterson, who worries about the skin cancer risk, said she hasn’t told her dermatologist about her self-treatment routine.
“I haven’t kept in contact with my dermatologist about it for the longest time. It was a dead end,” she says.
Except for a few persistent spots, her psoriasis has improved with the lifestyle changes. But she fears her next flare is right around the corner. She’d prefer to work with a dermatologist on a solution, and she thinks at-home phototherapy could work for her. Until then, she says, “The only person that can help this is myself.”
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Casey Nilsson writes about psoriasis and autoimmune diseases for HealthCentral. Casey is an award-winning magazine writer based in Providence, Rhode Island. She’s a 2017 Association of Health Care Journalists fellow and her story on unfair labor conditions for people with disabilities was a finalist for the 2016 City and Regional Magazine Association Awards. Follow her on Twitter @casey_nilsson.