Empowering lymphatic filariasis affected individuals in India: acknowledging disability status and ensuring justice

Lymphatic filariasis (LF) is the second most prevalent worldwide cause of physical disability, following leprosy.1,2 India alone accounts for around 40% of burden with ∼525,440 lymphedema and 1,44,645 hydrocele cases (2021), majority from the states of Bihar, Jharkhand, Odisha, Telangana and Uttar Pradesh.2,3 India targets elimination of LF by 2027, three years ahead of global goal of 2030. In 2023, a revised five-pronged strategy was announced by the Indian Health Ministry which included a) multi-drug administration campaigns, b) early diagnosis and treatment, c) integrated vector control, d) inter-sectoral convergence, and e) leveraging on existing digital platforms and innovation in LF diagnostics.4 Patients afflicted by LF frequently endure substantial physical, economic, psychological and social impairments, which further contribute to impoverishment.5 In 2018, Government of India has officially notified the inclusion of ‘lymphedema’ as one of the physical disabilities under the criteria of ‘locomotor disability’. This recognition enables the inclusion of lymphedema-affected LF patients within the disability framework outlined in ‘The Rights of Persons with Disabilities (RPwD) Act, 2016'.6 Thecurrent policy change represents a significant step towards promoting the rights of individuals affected by LF, a condition that may not have been explicitly recognized as a cause of disability in the past. Table 1 lists a few of the disability benefits currently available to physically disabled individuals in India under different criteria of locomotor disability which may be applied to the LF-affected individuals under the current policy change. Although the gazette notification has notified the inclusion of lymphedema patients within the disability framework however, it is crucial to note that the full potential of this initiative is yet to be fully harnessed, and there still exist several gaps towards ultimately realizing the intended benefits of this critical policy change.