We thank the Ministry of Health (MOH) for its letter, “Financial help available for patients with rare skin conditions” (Feb 18).
Rare skin conditions are not just highly visible, with patients having very dry, scaly and red skin, but can also lead to other complications such as infections, loss of proteins and fluids, and temperature instability.
Many of these rare skin conditions are chronic and lifelong, and require continuous, long- term, multi-disciplinary care and management. Sub-optimal treatment can lead to systemic medical complications and also a poor quality of life.
While the long-term costs for patients with rare skin conditions may not run as high as those suffering from rare metabolic diseases, the costs incurred can also amount to a very significant sum over time.
The application of daily moisturisers, wound dressings and medications are integral in the daily care for these patients. Unfortunately, many of these “medical devices” are not on the list subsidised by hospitals, and not all patients find the subsidised moisturisers and dressings suitable for their daily skin care.
Many of our patients with rare skin conditions have the condition from birth and are now still children or adolescents, and are unable to tap Flexi-MediSave. Our societies have written in to the Rare Disease Fund twice over the last few years to request funding for our patients. However, we were rejected.
Perhaps MOH could review its subsidies for patients with rare skin conditions managed by specialists from the restructured hospitals. It could consider expanding the current list of moisturisers, wound dressings and medications that qualify for subsidies, and including them into its Standard Drugs List.
Increased funding, support and subsidies from the Government would greatly improve the quality of life for patients. Such inclusions would effect positive change in the lives of these patients and their caregivers in more ways than one.
I suffer from ichthyosis, a rare genetic skin condition that affects one in a million people worldwide.
While a cure for rare skin conditions remains a dream for patients like me, a more readily achievable goal is for those with such conditions to be accepted by society.
I have been researching the socioeconomic impacts of rare skin conditions on patients since 2022, under Dr Mark Koh, head of dermatology at KK Women’s and Children’s Hospital. The study was designed to assess the social and healthcare needs of about 50 patients with such conditions here and their caregivers.
The survey provided optimistic data regarding societal inclusion here, with the majority of patients viewing Singapore as having inclusive work and school environments. About 86 per cent of patients felt they have been treated fairly in school and the workplace.
The results are positive as patients with ichthyosis can struggle to be fully accepted and integrated into society.
However, there are gaps in financial inclusivity, with about 86 per cent saying that their medication was unaffordable, with costs ranging from $300 to $1,200 a month. This is particularly difficult since their conditions are lifelong.
Currently, the limit for MediSave funds that can be used for outpatient visits for complex disorders is $700 a year, a fraction of what patients with rare skin conditions spend. Only a few genetic disorders are on the list for the Rare Disease Fund and ichthyosis is not covered.
Increased government funding, together with a raised MediSave limit, would help many struggling families. Improving the funding system would not only dramatically improve the lives of patients and their families but also mark Singapore as a truly inclusive society.