Experts Urge Inclusion of Huntington’s Disease in India’s National Rare Disease Policy Amid Calls for Registry

NEW DELHI — On May 8, 2026, a coalition of medical experts, researchers, and patient advocates gathered at the Institute of Genomics and Integrative Biology (IGIB) to issue an urgent plea to the Union Health Ministry. Their goal: the formal inclusion of Huntington’s Disease (HD) in India’s National Policy for Rare Diseases (NPRD). The delegation argued that the current exclusion of this devastating neurodegenerative disorder leaves thousands of Indian families trapped in a cycle of financial ruin, social stigma, and “medical invisibility.” By integrating HD into the national framework, proponents believe the government can unlock essential funding for treatment, establish a much-needed national patient registry, and provide a lifeline to a community currently operating in the shadows of the healthcare system.

The “Invisible” Struggle: Understanding Huntington’s Disease

Huntington’s Disease is a progressive, inherited brain disorder caused by a single defective gene (the HTT gene) on chromosome 4. This mutation triggers the production of abnormal huntingtin proteins, which gradually destroy nerve cells in the brain’s basal ganglia and cerebral cortex.

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Unlike many rare diseases that manifest in early childhood, HD is predominantly an adult-onset condition. Symptoms typically emerge between the ages of 30 and 50—the peak of a person’s productive working life. The clinical presentation is often described as having ALS, Parkinson’s, and Alzheimer’s simultaneously. Patients experience:

• Chorea: Involuntary, jerky movements.

• Cognitive Decline: Difficulties with focus, planning, and impulse control.

• Psychiatric Disturbances: Severe depression, irritability, and anxiety.

“HD doesn’t just affect the patient; it hollows out entire families,” says Venkateswara Rao Koushik, Chairman of the Huntington Disease Society of India (HDSI), whose wife lives with the condition. “Because it is hereditary, children grow up watching their parents decline, knowing they have a 50% chance of inheriting the same fate.”

Policy Gaps and the Financial Burden

Since its launch in 2021, the National Policy for Rare Diseases (NPRD) has been a beacon of hope for many, offering up to ₹50 lakhs for treatment at 15 designated Centres of Excellence (CoEs), such as AIIMS Delhi. As of August 2024, the policy covers 63 conditions. However, HD remains conspicuously absent from this list.

This exclusion means that HD patients do not qualify for the high-cost therapies or the multidisciplinary care subsidies provided under schemes like Ayushman Bharat PM-JAY. Families are forced to bear the full brunt of “out-of-pocket” expenses for symptomatic treatments, which include antipsychotics and medications like tetrabenazine to manage chorea.

Experts argue that HD fits the criteria for Group 2 or 3B diseases under the NPRD—categories reserved for conditions requiring long-term, expensive management. The HDSI submitted a comprehensive dossier to the Health Ministry in late 2025, providing genetic and socioeconomic evidence to support this reclassification.

The Registry: Solving the “Chicken-and-Egg” Problem

A central theme of the New Delhi meeting was the desperate need for a National Huntington’s Disease Registry. Currently, India lacks official data on HD prevalence, a void that creates a policy stalemate.

“The first battle is recognition,” explains Dr. Sanjeev Jain, Emeritus Senior Professor of Psychiatry at NIMHANS, Bangalore. “Without a registry, policymakers hesitate to classify HD as rare due to a lack of data. But without classification, there is no official mechanism to form a registry. It is a classic chicken-and-egg problem.”

While precise numbers are elusive, the scale of the issue is significant. NIMHANS alone has treated over 500 patients in the last decade. Extrapolating these figures across other major institutions like AIIMS suggest that thousands of Indians are likely affected. Dr. Archana Seahwag, of the WHO’s International Health and Tropical Medicine division, noted that a confidential registry would finally make these “invisible” patients visible to the state, enabling targeted research and resource allocation.

Research Horizons and Expert Perspectives

The push for policy change comes at a pivotal time for medical science. Dr. Mohammed Faruq, Senior Principal Scientist at IGIB, highlighted that while there is currently no cure, gene-silencing technologies—such as antisense oligonucleotides—are showing immense promise in global clinical trials.

“We are on the cusp of therapeutic breakthroughs,” Dr. Faruq stated. “However, to bring these trials to India, we need the infrastructure that a national policy provides. We need regional centres of excellence and consistent domestic studies.”

Despite the optimism, some public health experts urge a balanced view. Expanding the NPRD to include adult-onset conditions like HD could strain the resources of the 15 existing CoEs. With over 6,000 known rare diseases globally, the government faces a daunting task in deciding which conditions receive priority in a budget-constrained environment.

Public Health Implications for Indian Families

For the average citizen, the inclusion of HD in the national policy would represent more than just financial aid; it would be a strike against social stigma. In many parts of India, the psychiatric symptoms of HD are often misunderstood, leading to the social isolation of affected families.

Practical implications of policy inclusion include:

• Genetic Counseling: Providing at-risk families with the resources to make informed reproductive choices.

• Early Intervention: Access to multidisciplinary teams (neurologists, psychiatrists, and physiotherapists) to delay the loss of independence.

• Insurance Coverage: Policy recognition would mandate insurance providers to cover HD-related hospitalizations, which are currently often denied.

“Inclusion in the NPRD would signal that the state recognizes the dignity of these patients,” says Dr. Jain. “It moves HD from being a ‘family secret’ to a manageable public health priority.”

Conclusion

The advocacy efforts in New Delhi underscore a shifting landscape in Indian healthcare—one that is moving toward a more inclusive definition of “rare” that encompasses both children and adults. As the Union Health Ministry reviews the HDSI dossier, the medical community remains hopeful that 2026 will be the year Huntington’s Disease finally gains the recognition it requires to move from the margins to the mainstream of Indian medical care.

Medical Disclaimer: This article is for informational purposes only and should not be considered medical advice. Always consult with qualified healthcare professionals before making any health-related decisions or changes to your treatment plan. The information presented here is based on current research and expert opinions, which may evolve as new evidence emerges.

References

• The New Indian Express. (2026, May 8). “Recognise Huntington’s disease under national policy for rare diseases.”