June 2019

 More on May’s Psoriatic Arthritis Awareness Month

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The month of May represented Psoriatic Arthritis Awareness Month, and in order to help boost its visibility, a social media toolkit was created for Global Psoriasis Coalition member use. In fact, the toolkit remains available to members for download on the Global Psoriasis Coalition member portal. The messaging developed was meant to facilitate dissemination of psoriatic arthritis facts and figures, encourage positive conversations about the disease, and boost awareness. A media analysis for the month of May was conducted to understand the impact of this year’s campaign, as seen in the heatmap, that identifies the number of mentions along with areas of the world where the conversation about psoriatic arthritis was most concentrated. The hashtags that were used to quantify our analysis are: #PsAawareness, #PsoriaticArthritis, #HowIThriveWithPsoriasis, and the term Psoriatic Arthritis.

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The data tells us that this year’s Psoriatic Arthritis Awareness month gained the most social media mentions in the United States, Argentina, Brazil and Mexico. As expected, psoriatic arthritis received more attention from the mainstream media during the month of May when compared to the rest of the year.

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It is important to note that the Coalition’s social media strategy was successful - one of the tweets from the social media toolkit was retweeted by the NCD Alliance, reaching 17,700 people! As we continue to grow our network, we can see that using social media as a part of the Coalition’s advocacy and awareness strategy is effective. Social platforms are a powerful way for us connect with others to build awareness, communicate authority within the psoriatic and psoriatic arthritis space, show authenticity, encourage engagement, and provide support.

Double Jeopardy

Scientific literature points to the same conclusion; the association between psoriatic disease and cardiovascular events is unmistakable. A meta-analysis of studies revealed that people with psoriatic arthritis (PsA) were 43% more likely to already have or develop heart disease compared to the general population. This included myocardial infarction (68% increased risk), cerebrovascular diseases (22% increased risk), and heart failure (31% increased risk). Patients with psoriasis have also been shown to have a higher prevalence of cardiovascular risk factors, and are at increased risk of developing severe vascular events including myocardial infarction and stroke.

These cardiovascular diseases are also linked to other co-morbidities such as metabolic syndrome and system wide inflammation that damages blood vessels, the skin, joints, and other organs. One of the more dangerous outcomes of these risk factors is the release of inflammatory signals causing atherosclerosis, the buildup of plaque narrowing arteries and flow of blood. All of these conditions are underlying threats for those with psoriasis and psoriatic arthritis since they are often underdiagnosed and undertreated for traditional cardiovascular risk factors. Scientists believe that the presence of common inflammatory pathways may provide an explanation for the association between psoriasis and cardiovascular comorbidities.

Thus, physicians should be more aware of cardiovascular risks when assessing patients with psoriasis and psoriatic arthritis. In particular, adequate treatment of psoriasis may not only improve the skin condition, but also decrease the risk and severity of cardiovascular and metabolic disorders.

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Nevertheless, there is a silver lining, as most risk factors for cardiovascular disease – obesity, diabetes, high cholesterol, high blood pressure – can be modified or managed. Both doctors and patients need to understand the cardiovascular risks and patients should feel empowered to ask questions about treatments, including medications.

So love your skin, with all your heart!

Getting Ready for Our Barcelona Meeting

We are looking forward to coming together next month in Barcelona alongside the 2019 IFPA Members Meeting. The members meeting will provide a mix of policy, strategy, tactical communications, and capacity-building session for psoriasis associations to advance their efforts over the coming years. For example, member associations will have the chance to engage in advocacy capacity building trainings, will learn about the forthcoming Global Psoriasis Atlas, and will have the opportunity to learn about the work of the Global Psoriasis Coalition through a dedicated presentation on 7 July.

On the 8th, the Global Psoriasis Coalition will convene for a targeted three-hour meeting with a focus on advancing the Coalition’s policy priorities. The meeting will start with an hour of programmatic updates from the IFPA Secretariat and the Coalition’s Focal Point team. The remainder of the meeting will center on uncovering and identifying member perspectives on the Coalition’s identified core policy areas: primary care, co-morbidities, and quality of life. While the Coalition received an overview of these priorities during the March 2019 meeting in Washington, DC, this meeting will set aside dedicated time for collecting member input to ensure that future pieces of policy collateral are representative of the group’s expertise and priorities.

In particular, Coalition members will have the chance to review progress and provide feedback on the outline for a forthcoming white paper on psoriasis, psoriatic arthritis, and primary care, to be launched alongside September’s 74th United Nations General Assembly. Further, members will respond to and align around a one-page policy briefing outlining the Coalition’s position on psoriasis and universal health coverage. The one-pager will serve to ensure that Global Psoriasis Coalition members and stakeholders are “speaking with one voice” on the topic of universal health coverage in the run-up to September’s United Nations High-Level Meeting on the subject.

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Cassie Waters