The cost of treatment remains a heavy burden, with 64 per cent of users reporting that the cumulative cost of ongoing care, including hospital visits, medications, and home care, poses a significant financial challenge. Additionally, 45 per cent of individuals noted inconsistent insurance coverage, leading to high out-of-pocket expenses, especially for advanced treatments. The economic strain often extends to families, with 39 per cent of users mentioning that family members contribute financially or take time off work to help with caregiving.
The cost of treatment remains a heavy burden, with 64 per cent of users reporting that the cumulative cost of ongoing care, including hospital visits, medications, and home care, poses a significant financial challenge. Additionally, 45 per cent of individuals noted inconsistent insurance coverage, leading to high out-of-pocket expenses, especially for advanced treatments. The economic strain often extends to families, with 39 per cent of users mentioning that family members contribute financially or take time off work to help with caregiving.
Access to healthcare is another major issue. Approximately 28 per cent of users live in rural or underserved areas, where access to specialised healthcare services is limited. This leads to delays in receiving essential care. A further 31 per cent report difficulty in accessing specialists for conditions like diabetes and cardiovascular diseases, leading to longer wait times and less frequent appointments. Around 25 per cent of users noted that healthcare systems in their regions are overloaded, which further contributes to long wait times and negatively impacts disease management.
A lack of awareness and education about chronic conditions also hampers effective management. The report indicates that 42 per cent of users lack adequate knowledge about their diseases and the benefits of adhering to prescribed treatments and lifestyle changes. Misconceptions about treatment were reported by 19 per cent of users, while 36 per cent found it challenging to navigate complex care plans, which involve balancing medications, monitoring, and lifestyle modifications.
is another key concern. Around 22 per cent of users report difficulties in remembering to take their medications regularly, especially those managing multiple conditions. Side effects lead 15 per cent of users to skip or stop their medications, and 37 per cent of users report that the high cost of medications leads them to ration their prescriptions or discontinue treatment altogether.
Spinal Muscular Atrophy (SMA): A Common Genetic Disorder
SMA is inherited in an autosomal recessive manner, meaning a child usually inherits two mutated genes (SMN1 gene), one from each parent, to develop the disorder. Parents who carry one mutated gene are called carriers and do not exhibit symptoms. The carrier frequency is relatively high, estimated to be between 1 in 40 to 60 individuals. The underlying genetic mutation leads to deficiency of a protein essential for motor neuron survival, leading to muscle weakness. The severity of SMA can vary based on the presence of additional copies of a related gene (SMN2 gene), which can produce the required protein, but in insufficient quantity.
Based on the age of symptom onset and the maximum physical milestones achieved, SMA is classified into 5 types: