Tag Archive for: Access to treatment

EUROPSO Members Meeting Highlights – November 2024, Frankfurt

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The EUROPSO Members Meeting, held on November 16, 2024, in Frankfurt, Germany, brought together patients and patient advocates from the psoriasis community to reflect on 2024’s achievements and strategize for the future.

Key Topics Discussed

1. Reflections and Plans by Jan Koren
EUROPSO President Jan Koren opened the meeting with a comprehensive overview of the organization’s activities in 2024 and outlined plans for 2025, emphasizing the importance of continued collaboration and innovation within the psoriasis community.

2. Health Technology Assessment (HTA) Updates
David Trigos, EUROPSO Vice President, discussed the new EU Health Technology Assessment regulation and its impact on the psoriasis community. Trigos also announced EUROPSO’s new membership in the HTA Stakeholder Network, a significant milestone for the organization. His presentation focused on:

  • Encouraging patient and representative involvement in joint clinical assessments and scientific consultations.
  • Strengthening the role of patients and stakeholders to enhance HTA transparency and quality.
  • Implementing standardized EU-wide methods for HTA processes.

3. Advocacy Campaigns in 2024 and 2025
Tina Koukopoulou reviewed the success of the European Psoriasis Week (EPW) and World Psoriasis Day (WPD) campaigns in May and October 2024. The meeting included a brainstorming session for 2025 campaigns, focusing on equity in treatment access, information, and digital tools.

4. GPP Wellness Project Update
Jelena Misita provided insights into the IFPA-funded project aimed at improving wellness for individuals with Generalized Pustular Psoriasis (GPP). Progress was shared on its three pillars: healthy diet, stress management, and physical exercise.

5. Effective Use of Data for Advocacy
Luisa Avendano, CEO of EFCCA, emphasized the importance of leveraging data for impactful advocacy, while Roberto Saldaña, Strategy Advisor, highlighted how Real-World Evidence can bridge gaps in innovation, stating that, for now, “Innovation does not reach the market… but we don’t even know what we’re missing.”

The meeting ended with a group photo, marking another successful gathering of EUROPSO members. Presentations from the meeting will be distributed to participants by the EUROPSO Secretariat in the coming days.

The event underscored EUROPSO’s commitment to advancing patient advocacy, promoting wellness, and enhancing access to treatment for the psoriasis community across Europe.

Report on European Psoriasis Week 2024

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Complete access to treatment across Europe: EUROPSO calls for urgent action on unequal psoriasis healthcare

During this year’s European Psoriasis Week, EUROPSO, the European Federation of Psoriasis Associations, called attention to the pressing issue of healthcare disparities faced by individuals living with psoriasis across Europe.

EUROPSO member organizations from Greece, Spain, Germany, Slovakia, Slovenia, Czech Republic, Portugal, and Serbia actively participated in this campaign by communicating key messages, translating and disseminating EPW24 materials on their social media platforms, and organizing awareness-raising events in their respective countries. This collective effort significantly contributed to the success of European Psoriasis Week 2024 and highlighted the importance of unified action in addressing psoriasis healthcare disparities across Europe.

Psoriasis, a long-lasting condition characterized by patches of abnormal skin, not only affected physical well-being but also posed significant risks to overall health and life expectancy. Recent studies revealed that individuals with moderate to severe psoriasis had a life expectancy that was, on average, five years shorter than those without the condition. The heightened risk of cardiovascular disease among individuals with psoriasis contributed significantly to this disparity.

Despite the recognition of psoriasis as a risk factor for various comorbidities, including cardiovascular disease and mental health disorders, there remained a concerning lack of visibility of psoriasis within healthcare policies and decision-making processes. This invisibility translated into disparities in market access decisions for psoriasis therapies across Europe.

EUROPSO President Jan Koren emphasized, “Psoriasis needs to be on the radar of policymakers and healthcare leaders. We have to tackle the gaps in treatment and care for people living with psoriasis across Europe. As we work towards the EU Healthier Together Initiative’s goals—reducing early deaths from non-communicable diseases and boosting mental health and well-being—we can’t forget about psoriasis patients.”

Within this year’s campaign, EUROPSO called for collaborative efforts among policymakers, healthcare professionals, and patient advocacy groups to prioritize the needs of individuals living with psoriasis. By promoting equitable access to treatment, raising awareness of comorbidities associated with psoriasis, and advocating for policies that support comprehensive disease management, EUROPSO aimed to improve the quality of life for psoriasis patients across Europe.

The EUROPSO podcast series focused on the Epicensus programme

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At the beginning of this year, EUROPSO produced four podcast episodes shedding light on different calls to action from the Epicensus programme, from three perspectives: patients, patient advocates, and medical professionals.

All four episodes are now available for streaming on Spotify and EUROPSO’s YouTube channel.

Despite many improvements in treating and managing psoriasis patients, significant needs still remain unmet. The Epicensus programme brought together three important groups of people: dermatologists, payors, and patient representatives, such as EUROPSO, with a focus on improving the standard of care.

The Epicensus programme achieved consensus across different psoriasis stakeholder groups on the essential changes needed to elevate the standards of care for psoriasis patients across Europe. Collective action is now needed to implement these changes. EUROPSO was proudly represented in this project by Jan Koren, our president.

We partnered with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme.

The production of these episodes was financially supported by UCB Biopharma.

To access individual podcast episodes, please click on their title below:

Episode 1: More than skin deep

Episode 2: Education for all

Episode 3: All in this together

Episode 4: Access all areas

European Psoriasis Week 2024: Request for Complete Access to Treatment Across Europe

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The European Psoriasis Week, scheduled for the last week of May, starting from May 27, is getting ready to inspire conversations and drive action towards ensuring complete access to treatment for individuals living with psoriasis across Europe. With a targeted focus on people aged 25-45, this year’s campaign aims to leverage the power of social media platforms like Instagram and TikTok to raise awareness and advocate for improved access to psoriasis treatment.

Based on available data provided by IFPA, there are estimated 6 million people in Europe living with psoriasis. Psoriasis, a chronic autoimmune condition that affects millions worldwide, poses significant challenges for those living with it. From the physical discomfort of skin lesions to the psychological toll of stigma and discrimination, the impact of psoriasis can be profound. However, access to effective treatment can make a world of difference, offering relief and improving quality of life for those affected.

The European Psoriasis Week 2024 campaign carries a simple yet powerful message: “Complete Access to Treatment Across Europe. Let’s talk about psoriasis in Europe.” Through engaging content and thought-provoking discussions, the campaign seeks to highlight the importance of ensuring that all individuals have access to the treatment and support they need to manage their condition effectively.

“We believe that every person living with psoriasis in Europe deserves access to comprehensive treatment options,” said Jan Koren, EUROPSO President. “By coming together during European Psoriasis Week, we can amplify our voices and drive meaningful change towards a future with healthier skin and a better quality of life.”

To join the conversation and show your support for complete access to psoriasis treatment across Europe, use the following hashtags on social media: #complete_access_4_all #let’s_talk_about_access #let’s_talk_about_pso #let’s_talk_about_treatment

For more information about psoriasis and the importance of access to treatment, visit Euro-Pso.

Media Contacts

Jelena Misita, Patient Advocacy Consultant at EUROPSO Email: jelena.misita@euro-pso.orgManel Casielles, Communication Officer Email: secretariat@euro-pso.org  

About European Psoriasis Week

European Psoriasis Week is an annual campaign dedicated to raising awareness about psoriasis and advocating for improved access to treatment and support for individuals living with the condition across Europe. By fostering dialogue and collaboration among stakeholders, European Psoriasis Week aims to drive positive change and enhance the quality of life for those affected by psoriasis.