Launch and Roundtable on Psoriasis by the National Psoriasis Association of Malaysia (NAPAM)

KUALA LUMPUR, 29 January 2024: Three patient organizations – Psoriasis Association of Johor (PAJ), Persatuan Penyayang PesakitPsoriasis Pulau Pinang (PPPPPP), and Psoriasis Association of Malaysia (PAM), supported by friends within the fraternity, Persatuan Dermatologi Malaysia (Dermatological Society of Malaysia), Malaysian Skin Foundation, and Arthritis Foundation of Malaysia came together to deliberate on a psoriasis white papertitled Psoriasis – Lifting The Burden Of Stigma & Changing Lives and celebrated the inception of a national level psoriasis patients association – NAPAM.

Published in 2020, the white paper on psoriasis serves as an important reference point to recognize 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 from 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.

Dr Latha Selvarajah, consultant dermatologist from Hospital Sultan Ismail Johor Bahru and medical advisor to PAJ, presented on thecurrent psoriasis landscape in Malaysia said:

“Psoriasis is a chronic multisystem inflammatory disorder with a genetic predisposition, primarily affecting skin and joints. Patients often get stigmatized 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. Early biologic treatment can help to achieve good disease control which leads to a better and more productive quality of life. There are treatment cost concerns, of course, but it clears the skin and can delay the onset of irreversible co-morbidities such as psoriatic arthritis and cardiovascular issues.”

“We need to destigmatize psoriasis. It is not contagious; it is not a cancer. It is an auto-immune disorder. It is important for patients to get accurate information on the products they are taking. There are plenty of products out there on the internet, but patients need to check with their healthcare provider if they are safe for use”, added Dr Latha.

Dr Azura Mohd Affandi, consultant dermatologist from Hospital Kuala Lumpur and medical advisor of PAM, presented on ‘Psoriasis burden of illness and the importance of optimal treatment for MOH patients & Cost Benefit Analysis of improving biologic access in Malaysia’. Her presentation presented a perspective on how access to innovative therapies like biologics, is a sustainable investment to a patient’s overall quality of life.

“With less side effects, less direct medical costs, improved patient productivity, and other cost-savings, there is a clear cost benefit in making biologic treatment accessible to more patients”, said Dr Azura.

“Currently, only 1.7% of patients being treated in public hospitalseligible for biologics are receiving biologic treatment. While alternative funding sources exist for example, MOH’s Tabung Bantuan Pesakit, Zakat, and so on, these patients need to navigate different application systems to obtain biologics”, she added.

Dato’ Dr Noor Zalmy Azizan, Immediate Past President of Dermatological Society of Malaysia chimed in on the funding challenges, saying 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 program to help patients, especially those from middle-income groups, to access more effective treatment for their skin diseases. The program offers subsidies of up to RM1000 for eligible candidates.

The roundtable concluded with the unveiling of the National Psoriasis Association of Malaysia (NAPAM), formerly known as Partners in Psoriasis Care. The president, Dr Yusof Sibert who is a psoriasis patient himself, shared that it is time for boots on the ground.

“NAPAM members will need to identify their focus areas and plan activities that leverage on the strengths and capabilities of each partner organization. There is much work to be done. For a start, plans are afoot to organize nationwide roadshows and get more patients onto the registry,” said Dr Sibert.

The roundtable discussion was supported by Novartis as part of an extended initiative to help raise critical awareness that psoriasis patients need better support. Mr. Elwakil Mohamed, Country President for Novartis Malaysia, said:

“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. 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. We hope that post this launch NAPAM continues to progressively move forward in championing better outcomes for all Malaysian psoriasis patients.

 

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