POLICY FOR ACTION 21/2024

Summary
Generalized pustular psoriasis (GPP) is a severe, lifelong, and potentially life-threatening condition. It is a rare disease with extremely severe and incapacitating symptoms. [1] Although it can occur in children, GPP typically emerges during adulthood and is more common in women than men. GPP is also distinct from plaque psoriasis. [2]
GPP is a disease with debilitating symptoms that negatively impacts the mobility and ability of the individual to conduct daily tasks. The severity of the disease can cause patients to become bedridden at times of extreme flares leading to a loss of independence. [1]
Effective treatment should be initiated early to minimize suffering. The focus of that treatment would be to increase or improve the person’s quality of life (QOL) by alleviating pain and discomfort. [3]
Patients with GPP often endure in silence, experiencing the effects of undiagnosed and untreated symptoms. These individuals experience physical suffering caused by the disease as well as societal stigma and discrimination. [1]
The psychosocial stress encountered often results in patients refraining from societal contributions including getting an education, holding a job, or building and maintaining relationships. [3]
Unfortunately, the impact of GPP is not thoroughly understood by dermatologists, general practitioners, and family members. For non-dermatologists, it is often thought to be an infectious disease which may hinder access to optimal care.
What are the current challenges and potential opportunities to increase and improve the standard of care, and quality of life for people living with this condition in Malaysia?
“Understanding unmet needs in treatment and care of patients with generalised pustular psoriasis in Malaysia” is a report by the Galen Centre for Health and Social Policy, commissioned and supported by Boehringer Ingelheim (Malaysia).
References
[1] Choon, S.E. (2022). The Future of Treatment in Generalized Pustular Psoriasis. International Psoriasis Council. https://www.psoriasiscouncil.org/treatment/treatment-generalized-pustular-psoriasis/
[2] Neuhauser, R., Eyerich, K., Boehner, A. (2020). Generalized pustular psoriasis—dawn of a new era in targeted immunotherapy. Exp Dermatol, 29.
[3] Choon, S.E., Lai, N.M., Mohammad, N.A., Nanu, N.M., Tey K.E., Chew, S.F. (2014). Clinical profile, morbidity, and outcome of adult-onset generalized pustular psoriasis: analysis of 102 cases seen in a tertiary hospital in Johor, Malaysia. Int J Dermatol. 53(6):676-84. doi: 10.1111/ijd.12070


