A Call for Justice: Huntington's Disease Patients Demand Inclusion in National Rare Diseases Policy

Imagine a cruel thief slowly stealing away your ability to walk, talk, think, and even feel. This is the harrowing reality for thousands of individuals living with Huntington's Disease (HD) in India, a relentless, inherited neurodegenerative disorder that systematically erodes motor control, cognitive function, and mental well-being.

But beyond the profound personal struggle, there's another battle being fought – a systemic one, led by the Huntington's Disease Society of India (HDSI), demanding an end to what they call a glaring oversight in national health policy.

The HDSI is sounding a powerful alarm, urging the Central government to immediately include Huntington's Disease under the ambit of the National Rare Diseases Policy (NRDP).

This isn't just a bureaucratic request; it's a desperate plea for recognition, support, and the fundamental right to accessible healthcare for a community living on the fringes of public health initiatives. Currently, while the NRDP offers a glimmer of hope and financial assistance for 13 other rare diseases, HD patients and their families are left grappling with staggering medical costs, a severe lack of specialized care, and an agonizing sense of abandonment.

Huntington's Disease manifests through a devastating spectrum of symptoms, typically emerging in adulthood, though juvenile forms also exist.

Patients experience involuntary movements (chorea), cognitive decline affecting memory and decision-making, and significant psychiatric disturbances, including depression, anxiety, and psychosis. This progressive deterioration not only robs individuals of their independence but also places an unimaginable physical, emotional, and financial burden on their caregivers and families, who often sacrifice their careers and savings to provide constant support.

The genetic nature of HD means that entire families often live under the shadow of this disease, facing the agonizing decision of genetic testing and family planning.

The absence of HD from the NRDP list translates into a denial of crucial financial aid for diagnosis, treatment, and symptomatic management.

Without policy inclusion, research efforts remain underfunded, specialized medical infrastructure is non-existent, and public awareness is critically low. HDSI emphasizes that including HD in the policy would unlock vital resources for genetic counseling, early diagnosis, and the development of comprehensive care pathways, all of which are desperately needed to improve the quality of life for those affected.

HDSI's advocacy extends beyond just policy inclusion; they envision a future where HD patients have access to multidisciplinary care teams, including neurologists, psychiatrists, physical therapists, and occupational therapists.

They call for dedicated funding for research into potential treatments and cures, as well as robust support networks for families. The society points to the more robust support systems in developed nations as a benchmark, highlighting the stark contrast with India's current provision.

This isn't merely a matter of adding another disease to a list; it's about acknowledging the inherent dignity of every individual living with a chronic, debilitating condition.

It's about ensuring equity in healthcare, fostering hope, and preventing further suffering. The ball is now firmly in the government's court, with HDSI and the entire Huntington's Disease community awaiting a compassionate and decisive response that can finally bring this vulnerable group into the fold of national healthcare priorities.

The time for action is now – to turn neglect into recognition, and despair into hope.