LETTERS: THE Covid-19 pandemic is a challenging time for all. Rare Diseases Alliance Foundation Malaysia (RDAFM) fully supports the frontline health professionals in the fight to contain this virus.
People living with rare diseases face many difficulties to get the diagnosis and care that they need even before the outbreak and such difficulties are exacerbated by Covid-19.
Many people with rare disease have chronic multisystemic dysfunctions including immunodeficiency, respiratory and neuromuscular compromise and are particularly vulnerable to Covid-19.
At the time when Covid-19 is piling pressure on limited health resources including intensive care facilities, it is important that care and support for people living with a rare disease are not compromised.
Equitable access to medicines and intensive care facilities for people with rare diseases should be ensured.
As we observed in many countries, discrimination against aged persons when health resources are under pressure could easily be extended to people with co-existing rare diseases.
Frontline health professionals should seek advice on a given rare disease, and involve a patient's carers and the treating clinical teams in their treatment and care plan.
Such approach will ensure the best possible outcome for people with rare diseases because there are thousands of rare diseases, making it impossible for any frontliner to be familiar with them all.
People with rare diseases, their families and carers, should be aware of their increased vulnerability to Covid-19. They should observe stricter self-isolation protocols, avoiding unnecessary outings.
Physical distancing, face mask and hand hygiene are particularly important for people with rare diseases and their families/carers to adopt for self-protection.
This attitude and approach should continue until a Covid-19 vaccine is created.
here are also official channels for people with rare diseases and their carers which they can contact if they are feeling stressed, lonely or uncertain on what to do, for example, Talian Kasih 15999.
The utilisation of digital health such as virtual clinics for routine health surveillance for people with rare diseases should be considered, if and when appropriate, to reduce the chance of exposure to Covid-19 virus.
However, there are limitations to virtual clinics or telemedicine consultations. For example, physical examination of the patient is not possible and there are ethical considerations with regards to patient's privacy and confidentiality.
It is our wish that all rare disease patients will come out unscathed in this time of Covid-19.
RARE DISEASES ALLIANCE FOUNDATION MALAYSIA
Petaling Jaya, Selangor
The views expressed in this article are the author's own and do not necessarily reflect those of the New Straits Times