Abbreviations: WHO: World Health Organization; IFPA: International Federation of Psoriasis Associations; P:Psoriasis; PA: Psoriasis Arthritis
Why was the IFPA created ?
1. To become trustworthy and respected as an international patient organization for psoriasis
2. To build a group demonstrating the high impact of P on the affected individual as well as on the society
3. To assist in the creation and development of other P patient associations
4. Hardest of all…to raise awareness of among the public, policy makers and healthcare professionals
Story of the creation of the IFPA
-1971 It was initially an association of Scandinavian national psoriasis organizations
-2007 The organization creates a secretariat
-Today, the IFPA comprises 54 member organizations in 52 countries
The IFPA identified the need of a forum where experiences on P can be shared.
-In 2003: creation of an education platform on P and PA
-In 2006: the first world conference on P and PA in Stockholm.
-These patient-centered activities focus on quality of life, function and participation as active members in society
Why did the IFPA organize a conference ?
-to encourage collaboration and develop research
-to gain global recognition
-to increase awareness by professionals and the industry of the role of the IFPA for medical advancement in P and PA
How did the IFPA help to develop other National P Patient Organizations ?
-In 2002-2003 in sought to develop other national groups. However it did not initially know how to do it ?
-It created twinning with other societies through Swedish embassies. They would send letters to the National Associations and all of them replied.
-This enabled the organization of the 1st meeting between National P patient societies took place in Sydney, Australia comprising African countries, Singapore, Australia
-Later on a general assembly and P conference was organized in Cape Town, South Africa
What did the IFPA do to raise awareness of P and PA ?
-In 2004 it organized the 1st World Psoriasis Day which took place for the first time on October 1st 2004
-In 2006, the IFPA identified the need to work with the UN and WHO to advocate regional and global level awareness
Why was it useful for the WHO to make a resolution ?
-Psoriasis was not on the global agenda of the WHO
-The member states of the WHO had very little knowledge,
-NO information on psoriasis was available in the WHO website
-There was no official recognition of psoriasis being a serious, chronic, non-contagious, debilitating disease, with systemic comorbidities
Coming to enact a resolution: a long path !
-In 2009, the IFPA starting to search how it could attract the attention of the WHO.
-In 2011, Panama accepted to be the leading champion to help create a WHO resolution on Psoriasis
-In 2012, Panama worked to make a statement at the 65th World Health Assembly (The US and Europe were not helpful)
-In 2013, IFPA organized side event at the 66th World Health Assembly. A report was issued by the WHO, click HERE to read it.
-In 2014, the resolution was adopted by the WHO after the 67th World Health Assembly. The resolution recognizes officially that psoriasis “is a chronic, noncommunicable, painful, disfiguring, and disabling disease for which there is no cure. in addition to the pain, itching and bleeding caused by psoriasis, many affected individuals around the world experience social and work-related stigma and discrimination”. It also acknowledges the heightened risk to develop “namely cardiovascular diseases, diabetes, obesity, Crohn’s disease, heart attack, ulcerative colitis, metabolic syndrome, stroke and liver disease.”(The resolution was lead by Qatar, Ecuador, Argentina and Panama)
To read the resolution, click HERE.
To read the article by the Canadian Psoriasis Network, click HERE
Following the resolution, the IFPA monitors that the WHO general secretariat implements the resolution.
Conclusion: the necessary resolution by the WHO required capabilities to build alliances and a lot of patience. But some things are worth fighting for.
Note: Presented by Lars Ettarp, President of the International Federation of Psoriasis Associations (IFPA) since 2003. He has psoriasis and psoriasis arthritis and has been member of the Swedish Psoriasis Association since the age of 27
Source of information: The road to the WHO psoriasis resolution: advocating for a better understanding of psoriasis as a global health challengeBest in Class Featuring patients, patient groups and organizations that have made a difference in worldwide advancement of dermatology patient education, support and care. International Dermatology Patient Organization Conference (IDPOC). World Congress of Dermatology 2015 – Vancouver, Canada