Breaking Through the Silence: The Heart-Wrenching Struggles of Rare Disease Patients in Their Long Wait for Care
Eight-year-old Krish Dev is on the long road to recovery following surgery to support his neck. Faced with a rare genetic condition called mucopolysaccharidosis type IV (MPS IV), Krish’s journey has been fraught with challenges. While his sharp wit shines brightly, his physical limitations-caused by outgrowing his body-prevent him from interacting with peers. His mother, Abirami, describes how Krish’s legs have developed unusually, complicating his ability to walk.
MPS IV progressively impacts bones and joints, leading to complications such as spinal cord compression and respiratory issues. Abirami has learned to cope with her son’s diagnosis but faces ongoing struggles for adequate care, as each hospital visit begins with hope and ends with uncertainty.
While last year’s Union Budget highlighted rare diseases by exempting specific treatments from customs duties, many patients still find affordable care out of reach as the disease continues its relentless progression. The National Policy for Rare Diseases (NPRD) introduced in 2021 offers financial aid for 63 conditions, but many advocate groups argue the ₹50-lakh cap on funding inadequately covers the long-term costs of treatments, often leaving families in debt and reliant on crowdfunding.
Abirami recounts the arduous journey her family endured to understand Krish’s health. Misdiagnosed for years with vitamin deficiencies at a government hospital, they eventually pursued genetic testing at a private clinic. “We finally learned that Krish has a rare disease that cannot be cured and will require lifelong care,” Abirami said, revealing the staggering costs of treatment, which can reach up to ₹2 lakh per week.
Krish’s recent surgeries highlight the severity of his condition; the first addressed structural support for his neck, while another focused on his legs. As he struggles to bear the weight of his growing head, his recovery depends heavily on medical interventions.
The story is echoed in Villupuram, where Rajesh battles a different rare condition-paroxysmal nocturnal hemoglobinuria (PNH), a blood disorder that necessitates monthly blood transfusions costing between ₹40,000 and ₹60,000. With each transfusion, his wife faces a temporary reprieve from debilitating symptoms, including fatigue and breathlessness, only for them to return quickly. Rare blood conditions complicate even finding suitable donors, adding further stress to the family.
Despite the provisions under NPRD, the effective allocation of funds remains a contentious issue. According to data obtained via an RTI request, the Health Ministry reported that approximately ₹30.79 crore was utilized from ₹299.59 crore allocated for NPRD in FY25-26. However, many patients continue to wait, with advocates like Manjit Singh urging for a reevaluation of the funding structure. He fears the existing cap discourages treatment initiation and threatens patients’ lives when funds are exhausted.
Efforts are underway to reform rare disease care in India. Kerala’s initiative offers free treatments to children under 18 with specific rare diseases, while Goa has introduced a value-based pricing policy to improve accessibility to innovative treatments.
As advocates call for a national newborn screening policy and improved infrastructure for rare disease management, the need for systemic change is urgent. “The government appears insensitive to these diseases,” Singh asserts. “Rare diseases aren’t rare; they have just been orphaned in policy.”
The plight of Krish and countless others underscores the pressing requirement for comprehensive care and support for families navigating the complexities of rare diseases.
Original Source: https://www.thehindubusinessline.com/specials/pulse/rare-diseases-the-long-wait-for-care/article70541791.ece
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Publish Date: 2026-01-26 06:49:00
