Spinal Cord Injury Day, observed annually on September 5th, was established by the International Spinal Cord Society (ISCOS) in 2016. The primary goal of this day is to raise awareness about the prevention of spinal cord injuries and to improve rehabilitation and opportunities for those living with such injuries.
Spinal cord injury (SCI) is a significant health concern, leading to premature mortality and long-term disability. It refers to damage to the spinal cord resulting from trauma (e.g. from falls and road traffic injuries) or non-traumatic causes like tumours, degenerative and vascular conditions, infections, toxins or birth defects. SCI can result in the total or partial loss of sensory and motor functions below the injury level. It diminishes the capacity of a person to perform daily activities, including walking, using one’s hands, physiological emptying of bowel/bladder or washing and dressing oneself. Due to poor rehabilitation and care, people with SCIs are likely to develop additional complications which can further aggravate their well-being. As you can imagine, this situation is far more common in low-and middle-income countries (LMICs). In this article, we will zoom in on prevention and rehabilitation in India, but some lessons are no doubt also valid for other LMICs.
We start with some global statistics, though. According to data from the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2019, approximately 20.6 million people globally lived with SCI in 2019. Sadly, SCI is a significant cause of long-term disability, accounting for over 4.5 million years of life lived with disability (YLDs) in 2021 (one YLD represents the equivalent of one full year of healthy life lost due to disability or ill health).
In developing countries, overall prevention and rehabilitation for spinal cord injuries is challenging due to a lack of patient autonomy, no insurance for rehabilitation, poor access to assistive technology, social protection and employment – among others. The evidence base on SCIs is also relatively poor, and there is often no comprehensive registration system to track the prevalence and incidence of SCIs.
Our country, India, is no exception in this regard. What’s the current situation? Approximately 1.5 million people live with SCI in India. Around 20,000 new cases are being added each year to this tally. The majority of the cases are males in the age group of 16-30 years, illiterate and poor villagers. Over time, though, the number of female cases has been rising. Several gaps remain in prevention, availability of assistive technology, and rehabilitative services in healthcare facilities. Due to poor employment, individuals with SCIs are also less likely to have access to social protection. India’s health insurance scheme (Ayushman Bharat) provides insurance cover for polytrauma treatment, but for long-term treatment (which people with SCIs need) the picture is less clear. Also, many SCI patients and their carers are daily wage earners who cannot access hospital-based rehabilitation. Telemedicine offers one pathway to care for SCIs but remains underdeveloped.
Way forward
To effectively address the needs of individuals with SCIs, a comprehensive public health approach is thus essential. Strengthening preventive measures through enhanced road safety protocols and modifications in homes, educational institutions, and workplaces can significantly reduce the risk of spinal cord injuries, mitigating human costs. Establishing specialised rehabilitation centres within district hospitals and outreach activities in rural areas will ensure more accessible care. Additionally, providing essential supplies like catheters, jelly, and gloves and investing in advanced wheelchairs such as Neo-Motion and Fly will improve access, mobility and independence. Both government and private sectors should develop vocational training and job placement programs to support economic integration. To deliver holistic care, comprehensive rehabilitation plans should involve multidisciplinary healthcare professionals, including physicians, physiotherapists, and psychologists. Furthermore, developing a comprehensive registry and researching the prevalence, incidence, and socio-economic impacts of SCIs will inform better practices and policies in India and other developing countries.
This multifaceted approach will enhance care, support, and integration for individuals with SCIs, ultimately improving their quality of life.
Rayan Fernandes with his colleague Ramya