Bangkok: Spinal Muscular Atrophy (SMA), a rare genetic disorder, affects approximately 1 in 10,000 Thai children, posing significant health challenges if not detected early. The National Health Security Office (NHSO) is being urged to enhance treatment access, as timely medication during the "Golden Period" can significantly reduce disability and mortality.
According to Thai News Agency, the NHSO is considering the inclusion of SMA treatment in the universal health coverage scheme to reduce inequality and increase access to innovative medicines. This aligns with the government's policy to ensure patients receive comprehensive care. The NHSO emphasizes holistic care for rare disease patients, which includes screening, diagnosis, treatment, and rehabilitation, to ensure continuous and comprehensive access to services, thereby reducing the financial burden on families and supporting patients' quality of life and long-term development.
Research highlights low awareness of SMA, leading to delayed diagnoses. In Malaysia, SMA remains under-recognized among healthcare providers, while in Indonesia, diagnosis often occurs beyond the crucial early detection period. In Thailand, genetic studies reveal a high carrier rate, suggesting a significant need for prenatal and newborn screening to detect the disease early. Despite the disease's rarity, its most common type is severe, and without treatment, patients often face severe complications or death within two years.
Efforts to improve SMA patient care include establishing support associations and advocating for policy changes to include SMA treatment in health coverage schemes. The NHSO's potential approval of SMA treatment for inclusion in the universal health coverage scheme represents a crucial turning point, potentially allowing patients, especially those from disadvantaged backgrounds, to access necessary treatment and improve their quality of life.
Dr. Pimchanok Kulsirichavaroj emphasizes the importance of early diagnosis and treatment, particularly during the first six months of life, to preserve muscle function and reduce complications. The development of a multidisciplinary care approach, which includes nutritional support, physical therapy, respiratory care, and mental health services, is essential for improving patients' quality of life.
Mr. Adisorn Buranawong, representing SMA patients' families, highlights the profound impact of SMA on families, calling for policies that support patients and their families holistically. Dr. Kitiwan Rojaneunongnit stresses the importance of societal awareness and systemic collaboration among stakeholders to ensure equal access to care and improve the overall treatment landscape for SMA patients in Thailand.
The commitment to improving SMA patient care requires concerted efforts from policymakers, healthcare providers, patients, and families, alongside continuous education and awareness campaigns to promote early diagnosis and establish a sustainable care system.