MP Hanuman Beniwal Demands Free Medicines For Rare Diseases In Parliament

Nagaur Member of Parliament Hanuman Beniwal has raised a significant demand in the Lok Sabha for providing free medicines and injections for serious and rare diseases. During the parliamentary session on Friday, Beniwal highlighted the plight of patients suffering from genetic disorders such as Spinal Muscular Atrophy (SMA) and Muscular Dystrophy. He questioned the government regarding the exorbitant costs of life-saving injections, which can reach up to ₹10 crore, making them inaccessible to the common public. The MP urged the central government to formulate a plan to provide these treatments free of cost to poor patients and to promote domestic manufacturing to reduce dependency on expensive imports.

National Policy for Rare Diseases and Financial Aid

In response to the MP's queries, the government provided details regarding the 'National Policy for Rare Diseases 2021'. According to official statements, the government has established 15 Centers of Excellence across the country to manage and treat identified rare diseases. Under this policy, financial assistance of up to ₹50 lakh per patient is provided for the treatment of 63 specified rare diseases. This assistance is directed towards patients receiving treatment at these designated centers. The government emphasized that the policy aims to create a structured framework for the management of rare diseases while mitigating the immense financial burden on affected families.

Domestic Production and PLI Scheme Initiatives

Addressing the concern over the high cost of imported drugs, the government informed the House about the Production-Linked Incentive (PLI) scheme implemented in the pharmaceutical sector. According to officials, the production of 'Risdiplam', an essential API used in the treatment of Spinal Muscular Atrophy, has commenced within India under this scheme. Also, Natco Pharma Limited has launched a generic version of this medicine in the Indian market. The government stated that these initiatives are part of a broader strategy to enhance self-reliance in medicine production and ensure that critical drugs are available at more affordable rates for the Indian population.

Demand for National Project Status for PKCL Link

Apart from healthcare issues, Hanuman Beniwal also raised the matter of the Parbati-Kalisindh-Chambal (PKCL) link project. He demanded that the central government declare it a 'National Project' to ensure adequate funding and timely completion, while beniwal noted that this ambitious project is vital for ensuring long-term water availability in several districts of Rajasthan. He pointed out that although a Memorandum of Understanding (MoU) was signed between the Central Government, Rajasthan Government, and Madhya Pradesh Government on 28 January 2024, there is still a lack of clarity regarding the final approval and the detailed financial structure of the project.

Inter-state Water Agreements and Regional Impact

The MP emphasized that the PKCL project is crucial for addressing the drinking water and irrigation needs of Eastern Rajasthan. He argued that since it's an inter-state river-linking initiative, it should be fully funded by the Centre as a project of national importance. According to Beniwal, any delay in the financial and administrative roadmap could hinder the progress of the project, adversely affecting the agricultural sector and the general public in the region. He urged the Ministry of Jal Shakti to expedite the clearance process and provide a clear timeline for the project's implementation to resolve the regional water crisis.