Question

Discuss associated challenges in implementation of the policy.

Hint:

Addressing the challenges in implementing the NPRD requires improved funding, infrastructure, and awareness programs, as well as better regulatory mechanisms.

Answer 1

Although the NPRD is a significant step towards improving the care and treatment of patients with rare diseases in India, several challenges remain in its implementation.
Step 1: Challenges in Policy Implementation:
1. High Treatment Costs: Rare diseases often require expensive and specialized treatments. The financial assistance provided by the policy may not be sufficient to cover all costs, and many families struggle to afford the treatment.
2. Lack of Awareness: There is limited awareness about rare diseases among the general public and healthcare professionals, which leads to delayed diagnosis and treatment.
3. Limited Infrastructure: Specialized healthcare facilities and trained professionals to manage rare diseases are limited in India, which makes it difficult to provide adequate care to patients in rural areas.
Step 2: Additional Barriers:
1. Data Collection Issues: Collecting accurate and comprehensive data on rare diseases is challenging due to the lack of registries and centralized reporting systems.
2. Dependency on External Funding: Many rare disease treatments depend on international support, and India’s self-reliance in funding and research is still developing.
3. Regulatory Hurdles: The approval processes for orphan drugs and treatments can be slow, further delaying access to life-saving medications.