THREE patient organisations have come together recently to deliberate on a psoriasis white paper entitled “Psoriasis: Lifting the Burden of Stigma & Changing Lives” while celebrating the inception of the National Psoriasis Association of Malaysia (NAPAM).
They are the (i) Psoriasis Association of Johor (PAJ); (ii) Persatuan Penyayang Pesakit Psoriasis Pulau Pinang (6P); and the (iii) Psoriasis Association of Malaysia (PAM) which are supported by friends within the fraternity, namely the Dermatological Society of Malaysia, Malaysian Skin Foundation and the Arthritis Foundation of Malaysia.
Published in 2020, the white paper on psoriasis serves as an important reference point to recognise that psoriasis is a serious medical condition with complications and damage extending beyond the skin.
The paper also highlights issues that Malaysian patients face from a multi-faceted perspective, notably the physical, mental, social and economic impact this disease has on a patient’s quality of life.
During the roundtable, the panel of presenters from each patient association and foundation presented key topics from the white paper, including a deep dive discussion into the funding challenges faced by patients when accessing therapies to treat this life-long chronic disease.
“Psoriasis is a chronic multi-system inflammatory disorder with a genetic pre-disposition, primarily affecting skin and joints,” consultant dermatologist from Hospital Sultan Ismail Johor Bahru and medical advisor to PAJ Dr Latha Selvarajah pointed out.
“Patients often get stigmatised due to this visible disease and often have low self-esteem. We want patients to know that there are effective treatments to deal with the condition. We need to de-stigmatise psoriasis. It is not contagious; it is not a cancer. It is an auto-immune disorder.”
Meanwhile, Hospital Kuala Lumpur consultant dermatologist Dr Azura Mohd Affandi contended that there is a clear cost benefit in making biologic treatment accessible to more patients with less side effects, less direct medical costs, improved patient productivity and other cost-savings.
“Currently, only 1.7% of patients treated in public hospitals are receiving biologic treatment. While alternative funding sources exist for example the Health Ministry’s (MOH) Patients’ Assistance Fund, zakat (tithe) and so on, these patients need to navigate different application systems to obtain biologics,” added Dr Azura who is also the PAM medical advisor.
Delving on funding challenges, the Dermatological Society of Malaysia immediate past president Datuk Dr Noor Zalmy Azizan highlighted that co-pay schemes require more in-depth discussions so that patients are more responsible and compliant with their medication.
She shared that in December 2022, the Malaysian Skin Foundation launched a patient assistance programnme to help patients – especially those from middle-income groups – to access more effective treatment for their skin diseases. The programme offers subsidies of up to RM1,000 for eligible candidates.
The roundtable concluded with the unveiling of NAPAM (formerly Partners in Psoriasis Care) whereby its president Dr Yusof Sibert who is a psoriasis patient himself stressed the need to get cracking.
“NAPAM members will need to identify their focus areas and plan activities that leverage on the strengths and capabilities of each partner organisation. There is much work to be done. For a start, plans are afoot to organise nationwide roadshows and get more patients onto the registry,” added Dr Sibert.
The roundtable discussion was supported by Novartis Malaysia as part of an extended initiative to help raise critical awareness that psoriasis patients need better support.
“Psoriasis is truly a disease which goes beyond the skin. When uncontrolled, it can often lead to an overall negative impact on a patient from a physical, mental, social and economic aspect,” asserted Elwakil Mohamed who is country president of the innovative healthcare solutions provider.
“Novartis is committed to help improve and extend the lives of Malaysian psoriasis patients. Beyond that, supporting patient championed initiatives such as NAPAM is important as it allows for patient voices to be unified and elevated at a national level.” – Jan 29, 2024