Psoriasis has earned a place on the World Health Organization's agenda. Now what?
The scales first appeared when Jackie Chetcuti was 18, after a motorbike accident that left her hospitalized with serious injuries. At first, the native of Malta, a tiny island nation 60 miles off the toe of Italy's boot, thought that dry skin was to blame. But before long, the patches had spread to Chetcuti's elbows, knees, ears and — most excruciating for the teenager — her face. A dermatologist diagnosed her with psoriasis, linking its onset to the shock she'd suffered as a result of the accident.
"I had no clue what psoriasis was," Chetcuti said.
She wasn't the only one in her circle who hadn't heard of the disease: Despite her explanation that the scales creeping over her eyebrows and lips weren't contagious, not all of her friends were understanding.
"Some of them call you the next day," said Chetcuti, now 45 and living in Rome, "but some of them don't."
Psoriasis patients worldwide tell similar tales of self-consciousness, embarrassment, depression and rejection, which largely stem from a lack of awareness and education about the disease, said Kathleen Gallant, secretary of the International Federation of Psoriasis Associations (IFPA) and a member of the National Psoriasis Foundation Board of Trustees.
"Awareness is key," said Gallant, who lives in Pittsburgh and has had psoriasis and psoriatic arthritis since childhood. "It's so much more than just a skin disease."
In May, the effort to raise awareness about psoriasis took a big step forward when the 34-nation World Health Organization Executive Board unanimously adopted a resolution outlining the need for action on the disease. The resolution, the result of a years-long advocacy campaign spearheaded by Gallant, IFPA and its member organizations, signals a major milestone on the path to acceptance and access to care for the more than 125 million people afflicted with psoriasis worldwide.
"It gives us validity that we have a serious disease," Gallant said. "You can't have access to care unless the government is aware there's a problem."
As a child growing up in Lahore, Pakistan, 28-year-old Azhar Ali Taj struggled to make friends, or even leave his home, due to the scales that covered 90 percent of his body. One teacher even asked him not to come to school because she thought he would infect other children.
"Almost all of the people in my country, or the people I have met in my life, are unaware of this disease, except the people who carry it or the doctors," he said.
Resolution EB133.R2 aims to change that. In less than two pages, it summarizes the chronic, painful and disabling nature of psoriasis, highlights the stigma and elevated risk for other diseases, like cardiovascular disease and diabetes, that people with psoriasis face, and calls on the WHO and its member states to take action against it. The resolution encourages nations to raise awareness for the disease and requests the WHO issue a global report on psoriasis that includes basic information about the disease. In just 430 words, the resolution gives the plight of people with psoriasis — roughly 2 percent of the world's population — a global stage.
"This will help us stop hiding," Gallant said. "Each small step will change the world for us."
The mission to put psoriasis on the WHO agenda began in 2008 and required years of research, strategy and teamwork. Even as recently as January — when Gallant traveled to Geneva in an initial attempt to get the resolution on the agenda — the challenge still seemed great.
"So many people I met with really had no concept of psoriasis," Gallant said.
She even recalls overhearing one board delegate say, "We don't have psoriasis in my country."
Undeterred, the team enlisted the help of doctors and professional organizations worldwide for a final push that resulted in the successful passage of the resolution, led by Argentina, Ecuador, Panama and Qatar. The next hurdle: All 194 WHO nations will consider the resolution at the 67th World Health Assembly in May 2014, where it will require unanimous support in order to pass.
Regardless of that outcome, the process is in many ways already a victory, thanks in part to a four-page psoriasis report the WHO Convention Secretariat published in advance of the May vote and distributed to its members.
"We have made every health minister aware of psoriasis," Gallant said. "I feel that if we went no further, we've had a huge success because psoriasis was discussed."
A global fight
Psoriasis has dealt Leia Watts a cruel hand: Diagnosed as a preteen, the 30-year-old struggles with a severe form of the disease that has, at times, covered 70 to 80 percent of her body, spurred debilitating arthritis and caused a spiral of self-consciousness and weight gain.
But in at least one regard, Watts is lucky. She lives in Australia, where her home in Adelaide is within a half-hour drive of her doctors, whose treatment plan has finally granted her relief after years of pain. The Australian health plan picks up 95 percent of her methotrexate costs, plus the $5,000 tab for each infusion of Remicade (infliximab) she receives every six to eight weeks. After two-and-a-half years on the treatment regimen, Watts' skin is clear, her arthritis has all but disappeared, and she's lost about 70 pounds; now that her skin is better, and her movement is nearly 100 percent better, she is more comfortable being active and working out, resulting in the weight loss.
If Watts lived in one of the world's developing countries, however, her story would likely be very different. Access to and quality of care varies dramatically from one region to the next. In Kenya, for instance, just 10 dermatologists care for a nation of 40 million people, Gallant said. Such nations still need to build the structure necessary to deal with non-communicable diseases, which is costly.
"But that doesn't mean people with psoriasis should have to wait 20 years," she said.
Even in nations where access to care is good, awareness remains an ongoing fight. Watts has endured harsh words and embarrassment at the hands of children who don't understand the disease. Taj can't compete for the best jobs in his country because he fears he'll fail their mandatory medical exams; and in Italy, Chetcuti only recently became comfortable talking about her psoriasis since discovering an aloe-based cream that has cleared her skin almost entirely.
"I regret that I never spoke about it," Chetcuti said. "If you hide, you don't improve."
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.