This guest blog was authored by Valeria Corazza, President of APIAFCO (Association of Italian Psoriasis Friends of the Corazza Foundation)
Patient organizations, healthcare professionals and policy-makers all have a role to play in helping patients with psoriasis manage the disease, and generally raise awareness and change the way it is seen.
The common perception is that psoriasis is an itchy skin condition and not an autoimmune, long-term condition. Its red spots are visible. Those who suffer from it—more than 130 million worldwide, including over 3 million in Italy alone—experience it as a stigma, a mark that can lead to social discrimination, isolation, and depression.
Psoriasis is a non-contagious, chronic and relapsing skin disease. To this day, the causes are not totally clear. It is a genetic, multifactorial disease. It has ties to diabetes, obesity and cardiovascular diseases. It can go wild and get worse for a thousand reasons: from stress, to infections or trauma. Currently there is no cure for psoriasis. Based on severity, topical drugs, phototherapy, systemic drugs or biological drugs (the most innovative) can be used to control the symptoms.
The WHO (World Health Organization) in 2014 recognized it as a serious, disabling disease, which leads to a decrease in self-confidence and affects personal well-being. But many are not aware of the functional and psychological effects of the disease, and how it can affect daily life, educational opportunities or the ability to work.
This must change.
Patient organizations must fulfil their commitment to protect patients, carry out awareness campaigns, and simply provide regular, easy, high-quality information. Moreover, they can play a key role working with patients, healthcare professionals, and policy-makers and regulators to implement best-in-class therapeutic practices that improve the quality of life of people with psoriasis (more on this below).
Doctors are of course essential, and the doctor-patient relationship could in many cases be improved. As in other therapy areas, alignment between patient expectations and the doctor's considerations, and limited time dedicated to visiting or listening to the patient, mean that the patient’s perspective and needs are often not fully respected.
Last but not least, policy-makers at both EU and national levels are essential. While psoriasis management depends on existing healthcare systems, and therefore differs between markets, there are some common steps all could commit to:
- Devote resources to ensure that people suffering from psoriasis have access to professional medical care, including psychological support to improve coexistence with the disease, and support early screening of psoriasis patients.
- Implement the recommendations in the WHO Global Report on Psoriasis to include psoriasis in relevant national plans
- Support the development of innovative therapies. There is potential for further development of innovative treatment with biologics and small molecules.
- And – help give the psoriasis community a voice!
In recent years, we’ve seen much improvement, but people with psoriasis deserve better: we must all work to push the disease far higher up the agenda and make it easier for patients to manage it, day in day out.
The challenge continues.