Delhi HC Seeks Centre's Reply on Funding for 3-Year-Old's Rare Disease Treatment

Delhi HC Seeks Centre's Reply on Funding for 3-Year-Old's Rare Disease Treatment

New Delhi, April 24, 2026: The Delhi High Court has sought a response from the Union government on a petition filed on behalf of a three-year-old girl suffering from a rare and life-threatening genetic disorder, with her family seeking financial assistance for treatment that is beyond their means.

The case has drawn attention far beyond the courtroom because it touches on a growing challenge in India's healthcare system: how to provide treatment for patients suffering from rare diseases when the cost of therapy can run into several crores of rupees.

The petition argues that the child's access to life-saving treatment is protected under Article 21 of the Constitution, which guarantees the right to life and personal liberty. According to the plea, denying access to treatment due to financial constraints effectively deprives the child of her constitutional rights.

The High Court has directed the Centre to place its position on record and explain what assistance, if any, can be extended under existing policies dealing with rare diseases.

A Fight Against Time

The young girl is reportedly battling a rare genetic condition that requires highly specialised treatment. Such disorders are often diagnosed in infancy or early childhood and can lead to severe disability, organ damage or death if left untreated.

For many families, the challenge is not only medical but financial. Treatments for rare diseases frequently involve imported medicines, gene therapies or advanced biological drugs that are among the most expensive healthcare interventions available anywhere in the world.

According to medical experts, several therapies used for rare disorders can cost anywhere between ₹50 lakh and ₹20 crore depending on the disease and the treatment protocol involved.

The girl's family told the court that they do not possess the resources necessary to fund the treatment independently and have therefore approached the judiciary for relief.

What Are Rare Diseases?

Rare diseases are conditions that affect a relatively small percentage of the population. Although each disease individually impacts only a limited number of people, collectively they affect millions worldwide.

India faces a unique challenge in this area. Medical researchers estimate that thousands of rare diseases exist, many of them genetic in origin. A significant number affect children and require lifelong medical care.

Common examples include:

• Spinal muscular atrophy (SMA)

• Duchenne muscular dystrophy

• Gaucher disease

• Pompe disease

• Certain inherited metabolic disorders

Many of these conditions require therapies that are either unavailable in India or available only at very high costs.

National Policy and Funding Challenges

The case also highlights the limitations of current funding mechanisms for rare disease treatment.

The National Policy for Rare Diseases was introduced to improve diagnosis, treatment and financial support for patients suffering from uncommon disorders. The policy provides assistance for certain categories of rare diseases and seeks to strengthen treatment centres across the country.

However, implementation challenges remain.

Patient advocacy groups have repeatedly argued that financial support often falls short of actual treatment costs, particularly for diseases requiring long-term therapies or imported drugs. Families frequently turn to crowdfunding campaigns, charitable organisations and court interventions to secure funding.

Legal experts say the present case could become significant because it examines the extent of the government's obligation when treatment costs exceed the capacity of affected families.

Constitutional Right at the Centre of Debate

At the heart of the petition is a constitutional question.

The family has argued that the right to life under Article 21 is not merely a right to survival but includes access to healthcare necessary for preserving life and dignity.

Indian courts have, over the years, expanded the interpretation of Article 21 to include various aspects of health and medical care. Several Supreme Court judgments have recognised healthcare as an essential component of the right to life.

The petition reportedly relies on this legal principle to argue that a child should not be denied treatment simply because her family cannot afford it.

Senior constitutional lawyer and healthcare policy analyst Dr. Arvind Menon said the issue goes beyond one individual case.

"The court will have to balance financial realities with constitutional guarantees. Rare disease cases present some of the most difficult public policy questions because treatment costs can be extraordinarily high, yet the consequences of non-treatment are often fatal," he said.

Growing Number of Similar Cases

Over the past few years, Indian courts have increasingly been approached by families seeking government support for rare disease treatment.

Several cases involving children suffering from spinal muscular atrophy and other genetic disorders have reached High Courts and the Supreme Court. In many instances, judges have directed authorities to examine funding options or expedite decision-making processes.

Healthcare activists say these petitions reveal systemic gaps in access to advanced therapies.

"Families are forced into litigation because there is no predictable mechanism for securing treatment funding. Parents spend precious months navigating bureaucracy while diseases continue to progress," said rare disease advocate Ritu Sharma.

The issue has become particularly urgent as advances in gene therapy create new treatment possibilities but at unprecedented costs.

Implications for Families Across India

The outcome of the Delhi High Court proceedings could have implications for thousands of families facing similar situations.

For parents of children with rare disorders, the case represents hope that courts may push governments to strengthen support systems and funding frameworks.

In states such as West Bengal, where many families must travel to metropolitan hospitals for specialised care, treatment costs can become even more burdensome due to accommodation, travel and long-term medical expenses.

Public health experts argue that greater investment in early diagnosis, domestic drug manufacturing and insurance coverage for rare diseases will be necessary if India hopes to address the growing burden effectively.

What Happens Next?

The Delhi High Court is expected to examine the Centre's response in the coming hearings before deciding on further directions.

For the three-year-old girl and her family, the proceedings represent a crucial step in their effort to secure treatment that could significantly improve her chances of survival and quality of life.

The case is likely to be closely watched by healthcare professionals, legal experts and rare disease advocacy groups across the country, as it may influence how India approaches funding for some of its most vulnerable patients in the years ahead.