December 2018

From Dialogue to Action: Looking Ahead from the UN High-Level Meeting on NCDs

The first high-level meeting on non-communicable diseases (HLM-NCDs) that took place during the United Nations General Assembly in New York on 27th September laid the necessary political ground to progress on the global NCDs agenda. Mental health is now considered an NCD under a new political declaration, marking an important step in light of the psychological burden that psoriasis represents. Environmental risks factors were also integrated into the political declaration, showing a shift towards a ‘5 x 5’ approach in comparison to the ‘4 x 4’ approach that so far included cardio-vascular diseases, diabetes, cancers and chronic respiratory diseases.

Multiple initiatives were launched around the meeting, showing engagement from the entire NCDs community. For example, the WHO launched ‘SAFER’, an initiative displaying five high impact strategies to help governments reduce the harmful consumption of alcohol and its associated consequences on health, the economy, and society. Other initiatives include the launch of a white paper by the World Heart Federation about circulatory health. All of these initiatives and reports highlight the need for more data on NCDs and calls-for-action for governments.

The NCD Countdown 2030, a collaboration between the WHO, the NCD Alliance, The Lancet and Imperial College London, together with technical experts from international institutions, is advancing the issue by collecting impartial data on government progress towards realizing SDG target 3.4. The initiative will report on evidence-based policies and programs that will help shape stronger policies related to the prevention and management of NCDs, helping to hold governments accountable and raise awareness at the same time.

Nevertheless, the political declaration was criticized by the NCDs community for not integrating any strong language on the implementation of the sixteen “Best Buys,” a list of interventions compiled by the WHO that lists the most cost-effective and effective tactics for tackling NCDs. “Best Buys” include taxation, regulation, and legislation addressing products linked to NCDs, such as tobacco, sugary beverages, and alcohol. This absence left member states without any hard obligations to act on NCDs, as pointed out by the NCD Alliance in a recent statement. Moreover, the accountability mechanism that member states agreed on does not require them to meet any hard target by 2030. Adding to that, the next high-level meeting is planned for 2025, a large time-span that increases the risk of inaction.

Even if there was no formal reference to psoriasis and psoriatic arthritis in the political declaration, the high-level meeting gave unprecedented momentum to pave the way for a more integrated approach to NCDs, which is beneficial to the psoriasis community.

Psoriasis has been recognized as an NCD by the World Health Organization (WHO) in its resolution WHA67.9 since 2014. By keeping up the good work, the psoriasis community can only hope for greater progress to come.

Recapping a Successful World Psoriasis Day

From Belgium to Vietnam, we saw global engagement with the campaign to “Treat Psoriasis Seriously” on World Psoriasis Day on the 29th of October. IFPA launched a website where examples of actions undertaken by its members around the world are being uploaded continuously. IFPA also created a video especially for the campaign.

The President of IFPA, Hoseah Waweru, M.D., delivered a message to the 56 national and regional patient associations that constitute the organization, acknowledging robust advocacy efforts across their respective countries. He also thanked the NCD Alliance, the Global Health Council and the International Alliance of Patients’ Organizations, which are partners of IFPA and sponsored the 2018 World Psoriasis Day campaign.

In addition to a successful campaign, the Global Psoriasis Coalition’s website officially launched on World Psoriasis Day, 29th October. The website is an important step is bringing more visibility to the Coalition. It will serve as a platform for members to access past and current resources, but also to attract new members by presenting the mission of the Coalition and its guiding principles.

Multiple resources for advocacy can be found under an “Act now” tab, such as an infographic on psoriasis and psoriatic arthritis, and a social media kit with messages that can be used by all Global Psoriasis Coalition members to raise awareness about psoriasis. You will also find the white paper “Addressing NCDs: Psoriasis and its Co-morbidities” and our call-to-action under an “Our Position” page. The page “Stay Informed” displays news and updates about the Coalition’s work and other events of interest to the community.   

Finally, the website also has a member portal, which is where resources exclusively accessible by members will be posted.

European Academy of Dermatology & Venerology Conference: Engaging a Worldwide Community

Held in September, Paris was the backdrop to this year’s EADV Congress uniting over 6,900 members from around the globe with the aim of further advancing patient care, education, and research in the field of dermatology and venerology. Of note was the participation of Global Psoriasis Coalition members, with strong sponsorships from Almirall, Celgene, Bristol-Myers Squibb, LEO, Lilly, Novartis, and Pfizer. Moreover, members of the IFPA Secretariat attended the conference as an opportunity to meet with coalition members and further engage with new prospective members.

The conference’s 7 keynote speakers discussed topics ranging from the biomechanics and biomolecular issues of chronic inflammatory skin diseases to targeted therapies for melanomas to genetic mechanisms of skin disorders and beyond.

Particular focus was given to Clinical Oncology with a full two days dedicated to cover topics such as genetic predisposition, genetic causes and the environment, targeting the tumor environment, melanoma, lymphomas, non-melanoma skin cancer, rare skin tumors, as well as adverse effects of chemotherapies and targeted therapies.

Psoriasis continued to take center stage of the conference, because, even though it is a treatable disease, in many cases it is associated with other co-morbidities such as joint deformities and elevated risk of cardiovascular disease. Additionally, if visible areas are affected such as the face, hairline or hands it can lead to distress and social isolation due to lack of community understanding. Stigma is an important aspect of the disease that was raised in sessions and presentations. Sessions addressing these issues included: “Supporting your patient beyond skin: The psychosocial impact of dermatological diseases on patients”, “Body Dysmorphic Disorder”, and “Psychological burden of long-term treatment”, among others. Conclusions suggest that multidisciplinary care targeting patients and caregivers with education and psychosocial support can decrease family and personal burden, which in turn may decrease the cost of treating the condition because of better medical, psychosocial, and family outcomes.

Mental Health is Gaining Momentum at the International Level: What is in There for Psoriasis?

Mental health is now included in the list of NCDs recognized by the WHO, a highly anticipated step for the NCD community during the UN high-level meeting in New York in September 2018. Given that stigma is one of the biggest burdens of living with psoriasis, what can the psoriasis community expect moving forward when it comes to mental health?

With the inclusion of mental health in the UN political declaration, member states sent a clear signal that they want to see progress on the way mental illness is diagnosed, treated, and perceived in society.

World Mental Health Day, on the 10th of October, was an unprecedented success. Dr Tedros Adhanom and Lady Gaga co-wrote a blog in The Guardian, indicating that 1 in 4 people around the world will have to deal at least once with a mental health condition. Although the central topic of the post is about suicide among the youth – suicide is the second leading cause of death among the 15-29 years-old worldwide – the blog shows that mental health is still poorly treated around the globe, mostly due to a lack of understanding and to the stigma surrounding the condition.

Numerous initiatives on mental health have flourished. From Italy where a mental healthcare reform has been taking place for decades, to local initiatives like ThriveNYC in New York, leaders from different horizons have started to realize the economic and social burden of mental illness and beginning to consider solutions to tackle it.

Indicatively, The Lancet published the most comprehensive collection of research ever produced on how to promote and protect mental health and treat mental illness. And, earlier this year, the WHO published its Mental Health Atlas--it also has a Comprehensive Mental Health Action Plan 2013–2020.

According to an article by Dermatol Alergol, more than half of the people living with psoriasis presented some sort of depressive symptoms, due largely to the stigma that they experience in society. A study by the Journal of the American Academy of Dermatology shows that 40% of people wouldn’t want to shake hands with someone with psoriasis. Stereotypes that people with psoriasis are insecure, sick and unattractive are the most frequent. Stigma is especially strong among children, as reflected in this article about juvenile psoriatic arthritis. Although too often underestimated, stigma has important, lasting negative effects on people’s mental and physical health.

Integrating mental health in the non-communicable agenda of the WHO is a huge step that elevates mental health on the international agenda. Local and national actions to fight mental illness and the stigma associated with it are a promising way to improve lives of literally billions of people around the world. Knowing that stigmatization is a huge burden and that depression is not rare among people with psoriasis, this mental health momentum must be seized by all our partners to make sure that the more than 125 million people living with psoriasis do not get forgotten along the way.

Madeleine Boudreau