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 and to reduce the impact of this virus on people’s health and lives.
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 multi-systemic 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.
Many rare disease patients have to travel long distances, often across state borders, to attend clinics in tertiary centres located in Klang valley or regional centres. While we fully support movement restriction to curb the spread of Covid-19, we would like the authorities to facilitate rare disease clinic visits, for example Genetic Clinic appointments.
On the other hand, people with rare diseases, their families and carers, should be aware of their increased vulnerability to Covid-19, which will remain with us for months to come as long as there is no effective vaccine. They should observe stricter self-isolation protocols, avoiding unnecessary outings. Physical distancing, face mask and hand hygiene should be practiced by everyone to reduce the spread of the virus to other people especially the vulnerable groups. Such measures are particularly important for people with rare disease and their families/carers to adopt for self-protection. This attitude and approach should continue until a Covid-19 vaccine is created, which, when available, should be given to people with rare diseases as a matter of priority due to their increased vulnerability.
Families and carers should only follow accurate and reliable sources of information online and to be careful about receiving advice obtained from the social media. There 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. Indeed, telemedicine is a useful form of communication to make triage decisions on degrees of urgency, to convey concern and to determine on when their most important needs can be met.
However, there are limitations to virtual clinics or telemedicine consultations. For example, physical examination of the patient is not possible and there are ethical consideration with regards to patient’s privacy and confidentiality.
As much of the things are overshadowed by Covid-19 pandemic, it is equally important that the care of non Covid-19 patients is not neglected. Among the latter, rare disease patients are at increased risk of being forgotten or discriminated. It is our wish that all rare disease patients will come out unscathed in the time of Covid-19.
*Rare Diseases Alliance Foundation Malaysia (RDAFM) is a trust registered under the Trustees (Incorporation) Act 1952 in September 2017, which is under the purview of the Prime Minister’s Department, to provide a unified voice to speak for patients and families affected by rare disease in Malaysia.