Leave no one behind a fundamental promise under Sustainable Development Goals
The commitment to ‘leave no one behind’ is a foundational cornerstone of the 2030 Agenda for Sustainable Development and seeks to emphasise the critical distributional aspects of the global development agenda. The World Neglected Tropical Diseases (NTD) 2021 which is observed on January 30 every year, is a seminal moment in the fight against these diseases.
Even today, over 1.7 billion people worldwide are affected by NTDs which are a group of 20 communicable & non-communicable diseases predominantly found in tropical and subtropical areas. What sets NTDs apart is how they disfigure, disable and blind people. In many parts of the world, this means facing stigma, discrimination and social exclusion, which take a severe toll on mental health. Debility and disability due to chronic conditions arising from NTDs requires a complex health systems response that focuses on a continuum of care which most countries struggle to provide.
This year is of particular importance as it marks the launch of the WHO NTD Roadmap 2021-2030 which outlines a strategic framework for 149 countries to chart out a way forward in building a world without NTDs. India has the largest absolute burden of 11 major NTDs and about half of India’s population is at risk for one of these diseases- Lymphatic Filariasis or Haathipaon. The disease is also the second leading cause of long-term disability in the world. The infection damages the lymphatic system and leads to conditions such as lymphedema, which if not treated on time, causes permanent disability and enlargement of limbs. There are nearly 5 lakh reported lymphoedema patients in India primarily found in the states of Uttar Pradesh, Bihar, Jharkhand, and West Bengal.
The disability inflicted by filariasis causes tremendous physical hardships. Lymphedema patients find it difficult to walk, sit or stand for extended periods of time. Many patients face social isolation and stigma and as a result, develop depression. Furthermore, the disability also affects their chances of finding employment. Thus, filariasis patients are often dependent upon their families for sustenance.
The government of India’s National Programme for Elimination of Lymphatic Filariasis includes measures to alleviate the suffering of Filariasis patients. Through Morbidity Management and Disability Prevention (MMDP) services, Lymphedema patients are provided MMDP kits to help maintain limb hygiene and hydrocele patients are provided free of cost surgeries. Some states, such as Telangana even provide filariasis patients pensions for their sustenance. While these measures are undoubtedly critical to supporting people disabled by filariasis, strategic interventions that help them earn a livelihood and live a life of dignity are undoubtedly the need of the hour.
The Covid-19 pandemic saw businesses and industries move their work online, which provides valuable lessons on creating pathways to support people living with disabilities. Online training sessions led by institutions such as the National Career Service Centers for the Differently Abled or the National Skills Development Corporation (NSDC) through its Skill Council for Persons with Disability (SCPwD) aimed at skilling, up-skilling and re-skilling people affected with disabilities can help them obtain employment in areas such as tele calling for insurance, travel tourism, IT enabled services and Tally accounting & enterprise resource planning software. The trainings could be operationalised through a public private partnership and with the active involvement of civil society organisations and private institutions, to ensure the availability of adequate infrastructure and tools such as smartphones and laptops for the trainees.
To further support people living with disabilities, certain rehabilitation measures may be implemented. Community-based rehabilitation (CBR) interventions that promote social inclusion for people with disabilities (PWD) have already been successfully implemented across the country. Similar models that provide support with exercise, self-care education, access to mobility aids, vocational training, psychological care, and health promotion activities must be universalised in India.
Explicit attention to the gender dimensions of NTDs and how they intersect with other social determinants can ensure programmes and interventions are equitable and more effective. As we gear up to observe the second World NTD Day and renew our commitment to building a future without NTDs, we also have an opportunity to ensure that those already afflicted by NTDs are not left behind and can live their lives to the fullest potential.