This blog post was written by the International Federation of Psoriasis Associations as part of GHC’s Member Spotlight Series. The International Federation of Psoriasis Associations (IFPA) is a non-profit organization uniting national and regional psoriasis associations from around the world. More details on IFPA’s WHA side-event is available on GHC’s Special Events Calendar. IFPA is a 2018 Global Health Council Member.
Psoriasis is a severe chronic, non-communicable, disabling, disfiguring and painful disease for which there is no cure. On a global level, psoriasis affects 125 million people worldwide. The importance of actively working on psoriasis within the wider NCD context and the need for addressing psoriasis holistically derives from the two key facts:
1) Firstly, psoriasis affects the person in a holistic way, beyond the skin, causing severe impact on the body and mind, productivity, access to opportunities in life, participation in the community and more.
2) Secondly, people with psoriasis have increased chances of ‘comorbid conditions’ (such as diabetes, cardiovascular diseases, respiratory diseases, and more) and are affected by the main four risk factors influencing the onset and gravity of NCDs (tobacco use, physical inactivity, unhealthy diet, and the harmful use of alcohol).
Actions on psoriasis open up new possibilities in the way we address the prevention and control of NCDs in general. Psoriasis is at the intersection between the four main risk factors, and the four main NCDs, which allows for action on psoriasis to have a spillover effect in the wider NCD context. Such actions are not necessarily highly resource- demanding as much as they are innovative and based on ‘thinking out of the box’ and better use of current resources.
To answer this potential, and the recent developments in the global NCD agenda, IFPA launched the Global Psoriasis Coalition, a program that unites stakeholders under the joint goal of improving the lives of the 125 million people living with psoriasis through a strengthened NCD advocacy, and innovation, and development of effective health system actions. In 2017, IFPA, with the support of Argentina, Ecuador, Panama, Philippines, and Qatar organized the side event ‘Psoriasis in the NCD Agenda – The Road to 2018’, aiming to educate, present opportunities and call for action in the context of the NCD discussions in 2018.
After this successful event, IFPA and the Global Psoriasis Coalition continued the high-level presence and participation at key NCD-related events and convenings worldwide. More importantly, IFPA continued with the innovative work, which included working with exploring happiness, and what the science behind it can tell us about people living with NCDs, the needs that must be addressed through health systems, and the means of making decisions under the premises of happiness.
On May 24, held on the sidelines of the 71st World Health Assembly, IFPA’s side event ‘Happiness, Health & NCDs – Mind the Gap! How can we make public health decisions that make people happy?’ was a co-sponsored event between IFPA and the NCD Alliance. The event took place as an external event at the International Red Cross and Red Crescent Museum.
The side event aimed to:
1) present the latest research on happiness among people living with NCDs
2) showcase the connection between happiness and health and happiness and health
3) systems performance, including universal health coverage
4) showcase initiatives to involve people living with NCDs in policy processes,
5) explore and get inspired by various successful happiness-oriented policies, that have been implemented by Member States; and
6) provide direction on where the Third High-Level Meeting (HLM) on NCDs should aim if public decisions are to create happiness in people, increased quality of life and wellbeing.
Some takeaways from this event include:
1) The side event panel included Michael Birkjaer (Happiness Research Institute/PSO Happy); Fiona Adshead (NCD Alliance) and Josef de Guzman (Psoriasis Philippines / IFPA), moderated by Mario Ottiglio (High Lantern Group), who were able to reflect on happiness and mental health from different perspectives – scientific, global advocacy/engagement, and grassroots, respectively. The concept was proven to be very successful with the audience and cited as one of the best side events at the WHA
2) Social progress and welfare should be merged with happiness as a metric to measure society’s wellbeing
3) Findings from the First World Psoriasis Happiness Report were presented at the event, and reveal that psoriasis patients are 34% less happy than the average in Norway and Denmark (happiest countries in the world). 28% women and 16% men more suffer depression. 34% women and 27% men more feel lonely. 68% women and 51% men more are under stress. In addition, there are several exacerbating factors: co-morbidities, social isolation, risk factors and more
4) The side event introduced the outcomes of NCDA’s advocacy and training programme “Our Views, Our Voices” (OVOV), and how the NCD Alliance is aiming to involve people living with NCDs (PLWNCDs) in national and regional alliances, also aiming to raise dialogue about what is important for PLWNCDs, not about their diseases alone
5) The PsorCoach programme, lead-patient for patients, is the leading programme for psoriasis patients in the Philippines. There was a survey that said psoriasis patients are the saddest patients, after schizophrenia and chronic respiratory disease patients.
6) The High-level meeting on NCDs could benefit from the discussions by ensuring that it focuses on the right elements: people-centeredness, accountability, and holistic approach. The NCD Alliance’s campaign priorities under were presented, as well as the campaign priorities for IFPA
2) The World Psoriasis Happiness Report is available here.
3) You can view and share the live-takeaways from this event on IFPA’s twitter account or by following the hashtag #PsoActNow and #EnoughNCDs.