Global Psoriasis Coalition Convenes in Washington, DC
Members of the Global Psoriasis Coalition convened alongside the American Academy of Dermatology’s Annual Meeting in Washington, DC. The meeting was held on 3 March, and welcomed 16 participants, including Coalition members from various organizations as well as prospective new members. The meeting was facilitated by Mario Ottiglio, Focal Point for the Global Psoriasis Coalition and Managing Director of the High Lantern Group, Europe.
The meeting began with a session on a newly proposed Psoriasis Readiness Index—the Index would provide a snapshot of the state of access to psoriasis and psoriatic arthritis diagnostic and care services in a selected set of countries. The Index would be anchored in a broader advocacy narrative following the adoption of the WHO’s resolution on psoriasis, aiming to translate the aspirational aims of the psoriasis resolution and report into national-level action benefiting people living with psoriasis and psoriatic arthritis globally. During the meeting, Coalition members were aligned on the potential value of the Index, and noted that it would be important to position the Index as complementary efforts in the psoriasis space, such as the Global Psoriasis Atlas that collects epidemiological data on psoriasis and International Alliance of Dermatology Patient Organization’s GRIDD project that measures the impact of living with skin diseases from the patient perspective.
Meeting participants engaged in a spirited conversation on effective policy platforms and advocacy hooks to leverage moving forward, in this post-High-Level Meeting on Non-Communicable Diseases (NCD) landscape. Two key ideas surfaced during the course of this conversation: 1) advocates could “bundle” psoriasis and psoriatic arthritis in with other autoimmune or inflammatory conditions, and then advance that entire platform at the global policy level; and 2) advocates could shift course away from pursuing individual disease resolutions from the World Health Organization, in favor of an approach that advances skin disease and dermatology as a whole. Tactically, attendees highlighted medical education and regional advocacy efforts as two promising avenues for spurring action on psoriasis moving forward.
During a closing session on 2019 Coalition priorities, the High Lantern Group took the opportunity to provide an overview of the Coalition’s 2018 achievements:
Hosted a global advocacy event entitled “Happiness, Health & NCDs: Mind the Gap!” alongside the 2018 World Health Assembly in Geneva in partnership with leading governments, and the NCD Alliance
Produced two policy fact-sheets highlighting the relevance of psoriasis and psoriatic arthritis in major health debates such as NCDs, universal health coverage, and general healthcare financing
Launched a Global Psoriasis Coalition website and quarterly newsletter
Undertook continued advocacy and communications activities with governments, civil society, and the general public
Developed new policy and advocacy collateral for Coalition members, including a social media toolkit for World Psoriasis Day
The meeting closed with a conversation on 2019 priorities and activities. The group expressed support for framing the Coalition’s policy work around two key areas: primary and universal health care, and common psoriasis co-morbidities. The Coalition will convene again in-person in Barcelona in July and will also seek to host a side-event along September’s United Nations General Assembly High-Level Meeting on Universal Health Coverage. In the near-term, the Coalition will receive a social media toolkit for engaging in advocacy efforts around Psoriatic Arthritis Awareness month, coming up in May.
American Academy of Dermatology Annual Meeting: Event Overview
The American Academy of Dermatology’s annual meeting took place this year in Washington, DC from March 1st through 5th. The conference provided expert-led educational sessions as well as abstract programs and an exhibit hall featuring over 400 exhibitors and key decisions makers from across the world. The plenary session featured several of dermatology’s leading experts who focused their remarks on the rapidly increasing incidence of skin cancers, the role of dermatologists within their communities, and the emerging area of cellular therapeutics.
As a professional meeting, AAD offered continuing medical education programs within over 60 tracks that allowed attendees to select those most relevant to them. Tracks included everything from communications, to inflammatory diseases, to autoimmune disorders, and psoriasis.
Several sessions dove into topics such as systemic considerations and co-morbidities when assessing patients. Sessions based on psoriasis discussed new emerging therapies, specialized support services, and the impact of diet. There were also several featured sessions on topics such as cosmetics and late-breaking research on clinical trials. The overall theme of many of these sessions centered on treating the patient as a whole and not just the physical appearance of their disease. Cultural competence has gained attention as a potential strategy to improve quality and eliminate disparities in healthcare. This growing enthusiasm has placed emphasis on the need for physician training. Policy makers and stakeholders can leverage training and other mechanisms to develop and promote patient-centered care.
The Partial Picture of Psoriasis: Spotlight on Co-Morbidities
Red, raised, and itchy silvery patches of skin are what most people think of when talking about psoriasis. Though this ‘outside’ appearance is important to treat and prioritize for psoriatic patients, there is much more still left to tell; the less visible aspects of the disease are just as important to discuss. This chronic inflammatory disease is increasingly being recognized as systemic that supports a growing list of additional associations such as those between psoriasis and cardiometabolic disease, gastrointestinal disease, kidneys disease, malignancy, infection, and mood disorders. Furthermore, one link that has been long understood is the one between psoriasis and arthritis. Skin lesions classically precede joint symptoms facilitating dermatologists to identify patients at risk for psoriatic arthritis before irreversible joint damage occurs. Clinical and genetic factors are associated with development of psoriatic arthritis which affects between 18 to 42 percent of people with psoriasis.
The presence of these comorbidities affects not only the patient’s overall health – and quality of life – but also how the care they receive. If a patient has a comorbidity it might affect the types of medication they are able to take. This presents a potential struggle to understand the full extent of comorbidities in psoriasis patients.
Now, two new guidelines highlight recommendations for management and treatment of psoriasis along with the wide range of medical conditions linked to psoriasis. Thanks to these guidelines, health care providers have the clinical evidence of the past 10 years at their fingertips.
Early identification of comorbidities is tremendously important to help ensure any preventive measures that can be taken as the cost burden of psoriasis is substantial and increases with the development of psoriasis-related comorbidities. Unfortunately, the biological link between psoriasis and these coexisting diseases remains less clear, though scientists point toward overlapping inflammatory pathways, cellular mediators, and genetic susceptibility.
Luckily, there is a trend for emphasis on comorbidities where psoriasis should be approached with a holistic view to the overall well-being and the longevity of patients. Stay tuned for more articles on specific comorbidities associated with psoriasis in our quarterly newsletters – starting with one on sleep disorders below!
Dream Chasers: Psoriasis and Sleep Disorders
Sleep is a basic biological requirement characterized by relatively quiet sensory activity and stillness of the body. Though sleep is often thought of as an inactive period, it is critical for everyone serving as time to repair, regenerate, and process. Those who have psoriasis or psoriatic arthritis maybe well aware of the struggles to obtain a full restful night’s sleep. Psoriasis is associated with multiple comorbidities including metabolic syndrome, hypertension, diabetes, cardiovascular events, obesity and psychiatric disorders, which can all affect the course of sleep disorders. A systematic review of the literature demonstrated an increased prevalence of obstructive sleep apnea (OSA) with 36%–81.8% prevalence in psoriasis versus 2%–4% in the general population. The WHO’s Global report on psoriasis states that the impact of psoriasis increases with its severity, and that 34% of people living with psoriasis also have some type of sleep disorder. The cycle can be endless as the itching and pain lead to poor sleep, and poor-quality sleep can lead to exhaustion and stress, which can make psoriasis and psoriatic arthritis symptoms worse.
There is much evidence that symptoms of insomnia in psoriasis are directly related to the need to scratch. When in the lighter stages of sleep, the body may be more prone to trying to scratch, leading to limb movements that wake you up, even once you have drifted off. This same phenomenon also comes along with pain perception, something very familiar to those with painful psoriasis lesions or joint pain from psoriatic arthritis. Loss of sleep, even for a few hours a night, can cause your immune system to trigger tissue-damaging inflammation.
Research clearly points to the importance of reducing overall psoriatic inflammation and itching as keys for better sleep and improvement in mood. Mood, sleep disorders, and psoriasis share overlapping inflammatory pathways, suggesting a synergistic effort between mitigating inflammatory responses and improving psoriasis.
Unfortunately, mood disorders are frequently underdiagnosed, and this combination of comorbidities can cause patients decreases in quality of life and even disability. This underscores how psychological awareness can be critical to clinicians and patients in their practice.
Medications used to treat psoriatic disease can have a positive impact on sleep patterns. Promising studies on biologic therapies used for psoriasis, have shown marked improvement in quality of sleep and symptoms of sleep disorders as well as reduced rates of depression. Other recommendations include moisturizing skin before sleep and trying to decrease any stressors.
Thus, knowing that sleep is such a vital part of our wellbeing it’s important to keep conscious of the disease’s less overt consequences and recognize the understated comorbidity of poor sleep. We wish all those with restless sleep a bit of respite and easy dreams.