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.
“Thank you for your curiosity about my child’s wellbeing.” This is the first line on the cards my mom made when I was younger. Cards that she would hand to strangers who would stare, point and back away from me. I was born with a rare skin condition known as Harlequin Ichthyosis and, ever since birth, I have been told that I am different. I remember thinking to myself when I was younger: Am I really that different? Why do people care about how I look? Why can’t everyone be treated the same? And, until this day, I still don’t know the answer. Across the world, children born with Ichthyosis or any other conditions that alter their appearance or mannerisms are subjected to social ostracism, isolation, and neglect every day. I am lucky enough to be surrounded by friends and family who look beyond my condition, but to many children with apparent disabilities, being accepted for who they are is nothing more than a distant dream. When I first heard about the practice of “social-distancing” being implemented worldwide in response to the COVID-19 outbreak, I couldn’t help but relate it back to children like me. Children with disabilities who, every day, are distanced (or rather, isolated) by society, because of something they have no control over. For most people, this will be a temporary experience, but for many individuals with disabilities, this is a life-long sentence. While staying inside for days on end is far from ideal, in this time of crisis, I see a window of opportunity. We will emerge from this trial with knowledge of what it feels like to be excluded and distanced from friends, family, and society. It is possible this isolation may lead to alienation and exclusion towards people who are different from us. However, as Abdullah Shihipar of the New York Times suggests, “We could come out of this feeling more connected to each other than before.” After this experience, we can better understand how individuals who are continuously ostracised by society feel on a daily basis. I was born and brought up in Singapore and am so incredibly thankful for the ‘normal’ life I have here and the education I receive. However, it was something that my parents had to fight for — because of my disability — to make sure I could go to a regular school (rather than a special needs school) like everyone else. Therefore, I was pleased to see that as of November 2019, the Compulsory Education Act was extended to children with disabilities. This is an incredible milestone that I am so very glad Singapore has achieved for all the children who, until now, missed out on the opportunity to feel included in society. Nevertheless, there is still much more that can be done to make Singapore and our communities here fully inclusive. The next step is to ensure that as many children with disabilities as possible are integrated into regular schools rather than being required to attend special needs schools. While there will always be some individuals for whom special needs schools will provide the best educational opportunity, many others — particularly those with physical disabilities — might benefit from integration into regular schools as long as appropriate accommodations were in place for them. From my experience, schools are rarely fully equipped to provide for children with physical disabilities who may need special nursing care or for classrooms to be made accessible. Take, for example, a child with a mobility impairment. Most likely, this child does not have any kind of mental disability, making him/her completely competent to attend regular school. However, in order to attend this school, there would need to be ramps, lifts, and possibly some alteration to particular classrooms to make it more accessible for the child. The same goes for children with skin conditions like me. At my current school, although I am old enough to take care of myself now, when I was little, the school clinic was equipped to help me with medications and to moisturize myself several times a day. The nurses in the clinic were ready to help me whenever necessary. Similarly, my teachers were made aware of my condition so that they would let me rest during PE class if I got overheated or let me spray water on myself whenever I needed to cool down. Schools need to be better equipped and teachers need to be taught how to care for students with physical conditions in order for the Compulsory Education Act to be fully inclusive. I hope everyone takes away a lesson from this period of social distancing — that empathy is more important than fear. I hope that everyone can apply that feeling of empathy as they are stuck in a room, unable to go outside and see friends and family and understand the point made by Dr. Lawrence Palinkas in his article in Engadget that, “people don’t even need to be physically isolated to feel a sense of loneliness.” As Atticus Finch said, “You never really understand a person until you consider things from his point of view … until you climb into his skin and walk around in it.” It is time for us to do the same. Works Cited Lee, Harper. To Kill a Mockingbird. Dramatic Publishing, 1970. Shihipar, Abdullah. “Coronavirus and the Isolation Paradox.” The New York Times – Breaking News, World News & Multimedia, 13 Mar. 2020, www.nytimes.com/2020/03/13/opinion/coronavirus-social-distancing.html. Palinkas, Lawrence as quoted in Tarantola, Andrew. “The Psychological Impact of COVID-19 Isolation, As Explained by Scientists.” Engadget, 27 Mar. 2020, www.engadget.com/2020-03-27-pyschological-impact-covid-19-isolation.html.