Ingvar Agust Ingvarsson, a management consultant who lives in Kópavogur, south of the Icelandic capital, Reykjavík, has been living with psoriasis for 30 years. “My journey with psoriasis has not just been about managing a disease. It has been about finding strength in community and hope in every step forward, too,” said Ingvar.

Psoriasis affects around 2% of people globally, including 6.4 million in Europeⁱ.

Ingvar’s disease has been hard to live with but he has found strength in the people around him. “Giving back to the community that has supported me so much has been incredibly rewarding. It is my way of expressing gratitude and helping others to find their path to empowerment and healing," said Ingvar.

World Psoriasis Day

Every year on October 29^th, World Psoriasis Day 2024, led by the International Federation of Psoriasis Associations (IFPA), reminds us that psoriasis is a non-communicable and chronic disease. This year’s theme, ‘Family’, underscores how devastating psoriasis is for people living with the disease, as well as their caregivers and close relatives.

Frida Dunger, Executive Director of IFPA, said World Psoriasis Day is an important global awareness-raising campaign across more than 90 countries.  

“Everyone navigating the challenges of psoriasis deserves unwavering support,” said Frida. “This includes recognizing the challenges faced not only by the individual with psoriasis but also by their loved ones. As part of our commitment to raising awareness and understanding, we reach policymakers with resources detailing the effects of psoriasis on the family economy, work life, social life and relationships.

“Ten years ago in May, the World Health Assembly adopted a resolution declaring that psoriasis is a ‘chronic, painful, disfiguring and disabling non-communicable disease, without a cure’. Although much progress has been made in the past decade, there is still much more to do,” she said.  

How psoriasis shows up

Usually, psoriasis presents as patches of scaly, dry skin. The disease can be classified as mild, moderate or severe, depending on the extent of the impact on the skin. Psoriasis can spread beyond the skin too, causing painful inflammation of the joints and connective tissue. That is called psoriatic arthritis which affects around 30% of psoriasis patientsⁱⁱ.

Psoriasis emerges from an imbalance in the immune system which causes inflammation even when there is no threat to the body. It is a hereditary disease and some environmental factors like smoking, obesity, anxiety and alcohol can trigger it. Psoriasis has significant physical, psychological and quality-of-life consequences for millions of people worldwide.

Psoriasis is associated with several serious comorbidities, including cardiovascular disease and inflammatory bowel disease. Metabolic syndrome - a cluster of conditions like increased blood pressure and blood sugar, and excess body fat – is linked to psoriasis, too.

Despite a growing number of treatment options that can reduce signs or symptoms of the disease, psoriasis often remains undertreatedⁱⁱⁱ. By pursuing path-breaking science in immunology, including in dermatology, Bristol Myers Squibb is committed to helping to restore what immune-mediated diseases take away – quality of life.  

New report

Bristol Myers Squibb commissioned Economist Impact to produce a report, ‘Beyond Skin Deep: Tackling Gaps in Psoriasis Care’. The report’s authors reviewed epidemiological and scientific evidence about the disease, conducted focus groups and interviews, and consulted medical and patient experts in the UK, France, Italy, Spain, Germany, the US, China and Japan.

The report finds that psoriasis is misunderstood, under-resourced, underdiagnosed and undertreated. Up to 60 million people globally live with psoriasis. But only one-fifth of countries, mainly in the US and the EU, have reliable epidemiological data^iv. As well as the disease burden, psoriasis causes economic burdens, with the report citing significant productivity losses, especially through lost work hours, absenteeism and presenteeism. The report finds links between psoriasis and stress, anxiety and suicide while barriers to care include delays in diagnosis, lack of disease awareness and a shortage of dermatologists.

In France and Germany, the report found that some people thought psoriasis was contagious while others felt they did not want a personal relationship with someone suffering from the disease. The report finds evidence that some dermatologists do not focus enough on comorbidities while people living with psoriasis in rural areas find it hard to access care. Some general practice doctors do not refer people living with psoriasis to the right medical specialist. Access to innovative treatments is unpredictable, with variations caused by lack of funding for innovation.   

Psoriasis is characterized by stigmatization, misdiagnosis and undertreatment. These challenges can be met by improving disease awareness, health literacy, technology and treatments. Bristol Myers Squibb has called for a step change in psoriasis care, as well as in understanding the environmental factors that affect how it is perceived in society, by policymakers and in the healthcare community.

Calls to action

A modified approach to psoriasis care, and a more informed conversation about the disease, can help people living with psoriasis to deal with it better. Steps should be taken on the journey to better psoriasis care.

1. Awareness: Better education of patients and doctors about psoriasis, comorbidities, disease management and treatment, including risks, benefits, side-effects and expectations of treatment, would improve treatment access, uptake, adherence and impact.
   
   
2. Evidence-based policymaking: Knowledge and best practices should be shared in a more structured way between countries, including through local, national and regional discussion forums, and data registries should be more widely established to build understanding of disease burden and treatment effectiveness.
   
   
3. Technology: Machine learning and big data solutions could yield earlier diagnoses of psoriatic arthritis and comorbidities while telehealth could enable access to specialist consultations for people living with psoriasis in remote areas.
   
   
4. Access to new treatments: Faster clinical assessments, alongside efficient reimbursement processes and adequate funding, are critical in accelerating access to the latest medicines, as well as tackling inequities in their availability.
   
   
5. Medical education: Primary care providers should be better equipped to recognize the signs and symptoms of psoriasis, medical universities should formally engage with advocacy groups to ensure that patient centricity and shared decision-making are cornerstones of psoriasis care, and more dermatologists are needed to meet patient demand.
   
   
6. Screening: Dermatologists should screen people living with psoriasis more often for comorbidities, particularly psoriatic arthritis and cardiovascular diseases.

Policymakers, working with advocacy, clinical and industry leaders, should ensure that people are better informed about psoriasis, and take steps to improve the treatment journey for people living with psoriasis. The epidemiology and economic burden of the disease are unequal. Gaps persist in the data available to measure the prevalence of psoriasis, as well as how it impacts healthcare systems, economies and people living with psoriasis. While this holds globally and across the EU, low and middle-income countries fare worst when it comes to reliable evidence.

Professor Álvaro González-Cantero, who works in the Department of Dermatology at Hospital Universitario Ramón y Cajal in Madrid, Spain, says more granular, patient-centric outcomes research is needed in psoriasis.

“We need to raise awareness generally about how psoriasis can be detected and treated, as well as the comorbidities associated with the disease,” says Professor González-Cantero. “We need more innovation for psoriasis treatments, better real-world evidence among patients, stronger adherence to treatment regimes and faster detection of comorbidities. The patient should know when to seek treatment. That should happen early.”

Psoriasis should be a health priority for European policymakers. In tackling the disease and ensuring the right care is in place at the right time for everyone living with psoriasis, there is clearly some distance left to run.

References:
ⁱEuropean Commission
ⁱⁱNational Psoriasis Foundation
ⁱⁱⁱNational Library of Medicine
^ivGlobal Psoriasis Atlas