The Indian government has taken a significant step towards providing better healthcare access for patients suffering from rare diseases. Under the National Policy for Rare Diseases, the government has now classified primary hyperoxaluria, a life-threatening condition impacting the kidneys, bladder, and urinary tract, as eligible for financial assistance. This means patients requiring kidney transplants for this condition can receive up to ₹ 50 lakh in support.
This decision follows a recent review of the National Policy for Rare Diseases by a health ministry panel. Primary hyperoxaluria has been categorized under group 1, which encompasses disorders requiring one-time curative treatment, specifically for transplants. The policy categorizes rare diseases into three groups: group 1 for diseases requiring one-time curative treatment, group 2 for diseases requiring long-term or lifelong treatment, and group 3 for diseases with available definitive treatments.
The government’s commitment to addressing rare diseases is evident in the National Policy for Rare Diseases introduced in March 2021. This policy aims to provide comprehensive treatment and financial support to patients battling rare conditions, offering up to ₹ 50 lakh in assistance. Last month, Anupriya Patel, the Union minister of state for health, reported that 63 rare diseases have been included under the policy based on the recommendations of the Central Technical Committee for Rare Diseases, benefitting 1,118 patients.
In addition to primary hyperoxaluria, the National Policy for Rare Diseases covers several other serious health conditions, including osteopetrosis (bone disease), Fanconi Anemia (bone marrow failure, tumors, and abnormalities), Laron Syndrome (growth hormone insensitivity), and immune deficiency disorders such as severe combined immunodeficiency and Wiskot Aldrich Syndrome.
To enhance the diagnosis, prevention, and treatment of these rare diseases, the government has established 12 Centers of Excellence located in prominent government hospitals across the country. While the government allocated ₹ 109 crore to these centers over the past three years, only ₹ 53 crore has been utilized so far. This highlights the need for enhanced coordination and resource allocation to ensure effective utilization of funds and improved access to specialized care for patients with rare diseases.
The government’s initiative to provide financial assistance and establish specialized centers is a positive step towards addressing the unique challenges faced by individuals with rare diseases. However, further efforts are needed to ensure the efficient utilization of allocated resources and enhance awareness and access to diagnosis and treatment for these conditions.
