Arogya Sanjeevani Policy: Coverage for Rare Diseases

The Growing Crisis of Rare Diseases

Rare diseases affect millions worldwide, yet they remain one of the most neglected areas in healthcare. In India, over 70 million people suffer from rare conditions, many of which lack proper diagnosis or treatment. The Arogya Sanjeevani Policy, a government-backed health insurance scheme, has emerged as a critical tool in addressing this gap. But how effective is it in covering rare diseases?

What Are Rare Diseases?

The World Health Organization (WHO) defines rare diseases as those affecting fewer than 1 in 2,000 people. However, India lacks an official definition, leading to inconsistencies in policy implementation. Examples include:

• Gaucher’s Disease
• Spinal Muscular Atrophy (SMA)
• Pompe Disease

These conditions often require lifelong treatment, with costs running into crores (tens of millions of rupees). Without insurance, families face financial ruin.

Arogya Sanjeevani Policy: Key Features

Launched in 2020, the Arogya Sanjeevani Policy aims to provide standardized health coverage across India. Key aspects include:

Coverage Limits and Inclusions

• Sum Insured: ₹5 lakh per family per year (approx. $6,000)
• Pre- and Post-Hospitalization: Covered for 30/60 days
• Daycare Procedures: Included

However, the policy’s stance on rare diseases remains ambiguous.

Does It Cover Rare Diseases?

While the policy doesn’t explicitly exclude rare diseases, limitations exist:

1. High-Cost Treatments: Many rare diseases require therapies like enzyme replacements, which can cost ₹1–2 crore annually. The ₹5 lakh cap is insufficient.
2. Diagnostic Challenges: Delayed diagnosis (common in rare diseases) may lead to claim rejections.
3. Exclusions: Experimental treatments or orphan drugs are often not covered.

Global Comparisons: How Does India Fare?

Countries like the U.S. (via the Orphan Drug Act) and the EU offer incentives for rare disease research and treatment. In contrast, India’s policy framework lags behind.

Case Study: SMA Treatment in the U.S. vs. India

• U.S.: Zolgensma, a gene therapy for SMA, costs $2.1 million but is often covered by insurance.
• India: The same treatment is unaffordable for most, and Arogya Sanjeevani doesn’t cover it.

The Way Forward: Policy Reforms Needed

To make Arogya Sanjeevani truly inclusive, the following steps are crucial:

1. Increase the Sum Insured

Raising the cap to at least ₹25 lakh would better align with treatment costs.

2. Mandate Rare Disease Coverage

A dedicated clause for rare diseases, similar to the U.S.’s Rare Diseases Act of 2002, is essential.

3. Public-Private Partnerships (PPPs)

Collaborations with pharma companies could reduce drug costs, as seen in Brazil’s HIV/AIDS program.

4. Awareness Campaigns

Many patients remain unaware of their rights under Arogya Sanjeevani. Government-led education is vital.

Real-Life Impact: Stories from the Ground

Rahul’s Battle with Duchenne Muscular Dystrophy

Rahul, a 12-year-old from Maharashtra, requires ₹15 lakh/year for treatment. His family’s Arogya Sanjeevani Policy covers only a fraction, forcing them to crowdfund.

Priya’s Fight for Gaucher’s Therapy

Priya’s medication costs ₹2 crore annually. Despite having insurance, her claims were denied due to "experimental treatment" clauses.

The Role of NGOs and Advocacy Groups

Organizations like the Organization for Rare Diseases India (ORDI) are pushing for policy changes. Their efforts include:

• Lobbying for a National Rare Disease Policy
• Crowdfunding platforms for patients
• Legal battles to enforce insurance coverage

Technological Innovations: A Ray of Hope

AI and genomics are revolutionizing rare disease diagnosis. Startups like Genomics for All offer affordable genetic testing, which could reduce misdiagnoses and streamline insurance claims.

Final Thoughts

While Arogya Sanjeevani is a step forward, its current form falls short for rare disease patients. Systemic reforms, increased funding, and global collaborations are the need of the hour. For millions, this isn’t just about policy—it’s about survival.