Right to Health as a Fundamental Right
Three decades ago, the Supreme Court affirmed that the right to health and medical care is a fundamental right under Article 21 of the Constitution. Article 41, as a Directive Principle of State Policy, mandates public assistance in cases of sickness and disablement.
Treatment of Rare Diseases in India
Shortcomings of MoHFW
- The Union Ministry of Health and Family Welfare (MoHFW) has been criticized for not ensuring the right to health for patients with rare diseases.
According to a parliament reply, 13,479 patients have registered in the National Registry for Rare and Other Inherited Disorders.
- The Delhi High Court noted the inadequacy of the government's approach, indicating many unregistered patients likely suffering.
National Policy for Rare Diseases 2021 (NPRD)
- Approved on March 30, 2021, following Delhi HC intervention.
- In May 2023, a five-member committee was directed by Delhi HC to oversee its implementation.
Challenges and Financial Constraints
High Cost of Treatment
- The annual treatment cost for conditions like Spinal Muscular Atrophy (SMA) can exceed Rs 72 lakh.
- Financial support under NPRD is capped at Rs 50 lakh per patient, often inadequate.
Legal and Financial Challenges
- Patients exhausting financial support resort to legal actions, such as approaching the Kerala HC for continued treatment.
- The ministry's appeal to the Supreme Court resulted in an interim stay on orders to extend support.
Policy and Production
Local Production of Medicines
- NPRD guides MoHFW to collaborate with relevant departments to facilitate local drug production.
- Local manufacturing can significantly reduce costs, with first generic versions priced 90-95% lower than original drugs.
Patent Monopolies
- Patent monopolies hinder local production; after securing patents, holders often do not market drugs in India.
- There's a need for government intervention to overcome these barriers.
Conclusion and Call for Action
Despite NPRD's intentions, delays and funding limitations leave many, especially children, without access to crucial treatments. The ministry's refusal to provide additional funding or embrace suggested legal measures raises legal and ethical concerns. As a member of the health ministry's consultative committee, the writer urges prompt resolution of these issues, emphasizing no family should suffer due to inaccessible, high-cost life-saving medicines.