Making strides in support for psoriasis patients

Jul 01, 2016, 4:00am

The National Psoriasis Foundation seeks support for initiatives that will provide better access for psoriasis patients to effectively treat their disease.

In April, 80s pop icon Cyndi Lauper spent time in Washington D.C. speaking at a congressional briefing to ensure that people living with psoriasis and psoriatic arthritis have access to the treatments they need to manage their disease. The briefing, held by the National Psoriasis Foundation, was aimed at addressing the emotional and psychological implications of psoriasis and psoriatic arthritis.

The goal, according to Randy Beranek, president of the National Psoriasis Foundation, was to ask Congress to support initiatives that provide better access for patients to effectively treat their disease.

Last summer, Cyndi opened up about her struggle with psoriasis and her challenges in finding the appropriate treatments. She also partnered with the National Psoriasis Foundation and Novartis Pharmaceuticals Corporation on the ‘I’m PsO Ready’ campaign, which launched in June 2015 and highlights the physical, emotional and social challenges that patients with psoriatic disease face.

Studies have indicated that patients living with psoriasis are at an increased risk for anxiety, stress and depression. And, Mr. Beranek notes that it is not uncommon for patients to go many years before finding an effective therapy. “We hear all kinds of stories of people that struggle with their disease for years,” he told dermatologists during the American Academy of Dermatology’s Annual Meeting in March 2016 as he discussed his motivations for being in patient advocacy.

With research indicating a correlation between disease severity and quality of life, the goal of the ‘I’m PsO Ready’ campaign, Mr. Beranek says, is to urge patients to take control of their health and their health outcomes.

“About half of our community is treating their disease at a level that's not representative of the severity of their disease,” Mr. Beranek shared with Dermatology Times. “So they need to be treating their disease more assertively.”

A survey conducted by the National Psoriasis Foundation indicates that most of those affected by psoriatic disease are currently treating their disease with something - prescription topicals, biologics, OTC medicines, light therapy, diet, supplements, systemic therapies. Only 7% said they were using nothing. However, nearly half of those treating their disease reported that they had trouble getting the treatment they wanted (48%), 18% said the co-pay was too expensive and 21% say the insurance company didn’t cover the treatment.  Of those who aren’t currently treating their disease, 13% reported not finding a therapy that works, 21% are concerned about risks and side effects, 15% can’t afford therapy, and 21% aren’t bothered enough by their disease.

“The goal [of the I’m Pso Ready campaign] is really to get more people living with psoriatic disease to find a treatment that's going to work for them and commit themselves to staying with that treatment plan … that's the real fundamental of the campaign,” Mr. Beranek says. “So hopefully this campaign will speak to those individuals about how important it really is to treat disease and to treat it effectively, because there's all kinds of downstream effects of not managing that inflammation that's taking place in your body effectively.”

Cyndi, who shared her story with dermatologists at the Annual Meeting of the American Academy of Dermatology in March 2016, is hoping to lead others to better information and effective therapies.

She said it took her five years before she was diagnosed and on therapy that works for her. In 2010, she said she began experiencing symptoms on her head, but the disease progressed to cover her body. She quietly suffered with what she now understands as psoriasis. She tried various treatments to no success. And through it, she felt alone, confused, and sick, she told attendees. Though she continued performing, it was hard on her. The disease zapped her strength and her singing suffered. After one performance, she ended up in the hospital, she said.

Being able to talk about her condition freely and knowing that she’s helping other patients is how she says her involvement in the I’m PsO Ready campaign has changed her own life.

“The internet is a very powerful tool,” she told Dermatology Times. “I think that information is power. And one thing you feel when you're very sick is powerless.”

The I’m Pso Ready website is information for people, she said.

“We live in a day that has never been better for people that have psoriatic disease, in terms of treatment options and professionals,” Mr. Beranek shared with doctors at AAD.

“By addressing the significant impact psoriatic disease has on patients’ overall quality of life, we are getting closer to achieving our goal of dramatically improving health outcomes for all with psoriatic disease,” Mr. Beranek said in a press release.