Psoriasis NGOs form coalition to unite efforts in improving patients’ quality of life

Recently, four patient-led nongovernmental organizations (NGOs) joined forces to form the Partners in Psoriatic Care (PPC) coalition to consolidate efforts in enhancing the quality of life (QOL) of Malaysians suffering from psoriasis.

The coalition, comprising the Psoriasis Association of Malaysia (PAM), Psoriasis Association of Johore (PAJ), Persatuan Penyayang Pesakit Psoriasis Pulau Pinang (PPPPP), and the Arthritis Foundation of Malaysia (AFM), is governed by an executive committee. [https://psoriaticpartners.org/about-us/]

The associations decided to come together for their common cause. Even though the WHO called for policymakers to implement solutions to improve the lives of people living with psoriasis back in 2014, little has changed in Malaysia. [Global Report on Psoriasis 2016. WHO Available at https://www.who.int/publications/i/item/global-report-on-psoriasis Accessed on 23 August] This lack of improvement in QOL of Malaysian psoriasis patients is the driving force behind the PPC, said Dr Thiruchelvam Kanagasundram, representative of the coalition’s pro tem executive committee.

One of the key objectives of PPC is to serve as a national support and advisory group for people with psoriatic disease. Thiruchelvam noted that the coalition could leverage on each other’s strengths to create bigger impact. For starters, it is important for the public to recognize that psoriasis is a serious medical condition, which would require education and awareness. He said: “Apart from disease education, we aim to empower patients and caregivers with the tools to cope with and manage the disease. This will be supported with counselling, advice, motivation, and friendship through PPC’s network. Patients will also be directed to certified healthcare providers closest to them.”

Time for psoriasis to walk out of the shadows 

Dr Benjamin Cheah Tien Eang, president of AFM, noted psoriatic disease, which includes plaque psoriasis and psoriatic arthritis, is poorly understood even among healthcare workers, despite the fact that it is a common condition. “Knowledge gaps is one of the reasons general practitioners and primary care physicians delay referring patients to dermatologists and rheumatologists,” said Cheah. “This delay in diagnosis also hampers patient treatment and options.”

Mohd Faiz Abdullah, president of PAJ, echoed Cheah’s sentiments regarding the lack of awareness and understanding of psoriasis. He said: “We are continuously educating and supporting our patients, but it is an uphill battle.” He hoped the collaboration of the associations would enable them to create a bigger impact.

Beyond the obvious physical manifestations, depression and anxiety are high among psoriasis sufferers due to the distress caused by discrimination and social stigmatization, said Major Eugene Clifford Cross, president of PAM. Cross said: “This skin condition makes it challenging for people to get jobs because they are considered as liabilities or persons with disabilities. They also battle poor confidence and self-esteem, which affects their social life, relationships with others, personal development and career progress.”

Thiruchelvam said: “Apart from disease education, we aim to empower patients and caregivers with the tools to cope with and manage the disease. This will be supported with counselling, advice, motivation, and friendship through PPC’s network. Patients will also be directed to certified healthcare providers closest to them.”

Further along the road, the coalition aims to become the advocacy body to increase awareness among policy makers. Cross explained that psoriasis is a lifetime condition, which necessitates the development of a patient-centric, enhanced model of treatment, care, and welfare for patients by policymakers. “For this to happen, we urge the government to implement the long-awaited National Psoriasis Programme that will ensure better treatment and conditions for psoriasis patients.”

Key objectives of the PPC are:

-          To foster promotion, partnerships, collaborations and coordination of activities among stakeholders in relation to psoriasis and psoriatic arthritis

-          To serve as a national social support and advisory group for people with psoriatic diseases

-          To raise awareness of psoriatic diseases and thereby reduce social stigma, encourage early detection and holistic management.