Be Informed: Raising Awareness Around the Globe on World Psoriasis Day

October 25, 2020     

Amid the global COVID-19 pandemic, it’s more important than ever for people living with psoriasis to be informed about their disease, treatment options and communities. To commemorate World Psoriasis Day on October 29, leaders from the International Federation of Psoriasis Associations (IFPA), Sicily Mburu, M.D., Elisa Martini and Janina Kostiukaite sat down with Bristol Myers Squibb to discuss this call to action – and the enduring needs of the psoriasis community during the COVID-19 pandemic and beyond.

What are IFPA’s goals for World Psoriasis Day?

Janina Kostiukaite, Project Developer : World Psoriasis Day is an opportunity for us to raise awareness of key issues facing the psoriasis and psoriatic arthritis community, through our partners and members in 56 countries. We work closely with our patient associations as well as key external and corporate partners to organize activities on key aspects of the disease, to move us closer to our goals: 

  • Raise awareness

Psoriasis affects millions of people around the world – not just physically, but also socially, emotionally and financially. World Psoriasis Day aims to raise the profile of the disease and increase awareness of the effect it has on people’s lives.

  • Spread information

On World Psoriasis Day, IFPA and its partners aim to spread information about psoriasis, dispel common myths and answer questions, while also informing patients about their own condition, so they can feel empowered to speak about it.

  • Improve access to treatment

On World Psoriasis Day, IFPA and its partners lobby to give people with psoriasis better access to appropriate, affordable treatment, reaching out to key policy and healthcare stakeholders.

  • Give the psoriasis community a voice

Many people living with psoriasis may struggle to get the world to listen to their needs. World Psoriasis Day is an opportunity for the psoriasis community to speak out from a common platform – and have its voice heard.

What is the theme of this year’s World Psoriasis Day?

JK : Each World Psoriasis Day has a theme. Last year’s theme set the stage with “Let’s Get Connected.” Now that the community is focused on staying connected and working together, we’re excited to bring forward this year’s theme – “Be Informed.” We are hopeful that through our theme’s three pillars of empowerment, journey and resources, key audiences can learn more about why clear information and education are critical in all aspects of managing psoriasis and psoriatic arthritis, from patients to healthcare practitioners to policymakers. 

And of course, all of this is leading to next year’s theme, which will be “United.” We are laying the groundwork now by connecting and informing our audiences, so we can continue to come together in a meaningful way for patients in need. 

In 2021, IFPA will also be hosting the sixth annual World Psoriasis and Psoriatic Arthritis Conference (WPPAC). This important gathering of scientific thought leaders will help to further IFPA’s work, all while actualizing the three themes from World Psoriasis Days 2019, 2020 and 2021 – “Connected, Informed & United.”  

One aspect of IFPA’s work is the Global Psoriasis Coalition. What can you share about the Coalition and its forthcoming Psoriatic Disease Response Index?

Elisa Martini, Program Officer – Policy and Advocacy: The Psoriatic Disease Response Index is an initiative from the Global Psoriasis Coalition, a collaborative group that brings together medical societies, NGOs, foundations, industry and professional societies to promote psoriasis on the international non-communicable disease (NCD) policy agenda. The Index will be released this year on World Psoriasis Day – it’s a tool that measures how health systems are managing psoriasis, providing insight to help improve the management of psoriasis at all levels. 

What we’ve learned is that the patient journey is really impacted by engagement, and health systems and patient associations are identifying and implementing new strategies and technologies to aid the patient in that journey, which is an exciting, tangible output to see. 

How has COVID-19 impacted the psoriasis patient community, and how has IFPA offered support?

JK : It’s no surprise that COVID-19 has been challenging – people living with psoriasis or psoriatic arthritis are faced with some specific questions and concerns, and it’s been really important that we are providing them with reliable resources for managing their condition during the pandemic. We are working to collate reputable information, as well as connecting patients through social media, to share their experiences of living with psoriasis and how they’ve been impacted by the pandemic.

Sicily Mburu, M.D., Scientific Officer : At the beginning of the year, we quickly established a taskforce unit within the IFPA team to collect and disperse information, as we understood pretty early on there was a need for specific treatment guidelines for COVID-19 patients with psoriasis. We also received questions from patients who didn’t have access to a primary care physician or specialist – people were reaching out asking things like, “how will I get my medication?” or “am I at increased risk?” Being able to point them to reputable online resources was incredibly helpful. We also reached out to the International Psoriasis Council, which is a medical community of doctors and practitioners who are true experts in treating psoriasis, to find out how to best help patients navigate the information landscape during this time. Again, it all goes back to the theme of this year’s World Psoriasis Day: Be Informed. 

EM : The response and the resilience of the psoriasis community has just been amazing. All of our partner associations have adapted to this situation and gone virtual while still providing similar levels of support. For example, several organizations were holding support groups before and they switched to virtual support groups. Hosting these virtual support groups continued to allow patients to exchange knowledge and talk about their experiences, while also providing much-needed support given additional burdens caused by COVID-19. While no one is sure what the immediate future holds regarding COVID-19, it’s been reassuring to see the community adapt and remain connected.

What message do you have for patients living with psoriatic diseases?

SM : It has undoubtedly been a difficult time for patients with underlying diseases during the pandemic – but as Elisa mentioned, it has been so inspiring to see how extraordinary the psoriasis community is day in and day out. It’s our hope that through our continued efforts to share information and raise the profile of psoriatic conditions through our policy work like the Psoriatic Arthritis Disease Index and awareness efforts like World Psoriasis Day, we can continue to work toward better outcomes for patients living with these chronic diseases. 

Bristol Myers Squibb is proud to partner with IFPA to help patients in need. Learn more about IFPA here.

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