I am expressing my experience of suffering caused by the disuse of Amyloidosis for the last year. The increasing number of severe health complications across the globe, including the widespread prevalence of COVID-19, has witnessed the rise of numerous deadly illnesses. Amongst them, a rare and often overlooked disease, Amyloidosis, has been distressingly impacting many’s health.
Amyloidosis, a plasma cell disorder often associated with Multiple Myeloma, presents unique challenges due to its nature. Characterised by misfolding proteins that deposit toxic amyloidogenic materials in multiple vital organs such as the heart, kidney, liver, and even neurological structures, Amyloidosis is a complex disease that is difficult to diagnose and manage. This is primarily due to the lack of accessible diagnostic tools like mass spectrometry to trace the insidious nature of the disease.
Haematologists in India (based on my experiential learning), although extremely dedicated to their craft, often work in isolation, creating a gap in the syndicate needed for such complex cases. Unlike international counterparts, India lacks Centres of Excellence dedicated exclusively to Amyloidosis treatment, leading to fragmented care for the affected patients.
In response to the pressing need for a comprehensive support mechanism, stakeholders, including patients and caregivers, have come together to form the Amyloidosis Support Group of India (ASGI). ASGI’s primary mission is to advocate for the government and healthcare institutions to allocate higher priority to Amyloidosis treatment and support individuals socially and economically to battle this rare yet debilitating disease. I am also a member of this support group, which does not have any legitimacy in terms of any affiliation, and thus I am writing my views exclusively as my personal opinion.
The trauma caused by Amyloidosis due to delayed diagnosis and organ dysfunction often transcends that of cancer, indicating the urgency of addressing this issue. Therefore, we advocate for a fast-track treatment regimen that could be adopted at a large scale across India. It also encourages mass campaigns to raise awareness about the complex nature of Amyloidosis.
The establishment of any National Centre or Foundation on Amyloidosis might be a significant step towards creating a united front at the policy level to combat Amyloidosis. It marks a stride in the Indian healthcare sector’s journey towards understanding, managing, and ultimately finding a cure for this disease.
(Author is President, Ram Dayalu Singh Sustainable Development Foundation, New Delhi)