The long wait and the struggle of families battling NF1- A rare form of Neurofibromatosis

Every parent hopes to provide their child with a great future. For five-year-old Bihan Biswas from Kolkata and his family, that future is characterised by fear, uncertainty, and a relentless battle against Neurofibromatosis Type 1 (NF1).  NF1 is a rare genetic illness that impacts the nervous system resulting in scoliosis, eyesight impairment, and learning disabilities. Bihan’s father talks about how painful and heartbreaking their everyday existence is. “There is a fresh war every day, he says – “My child is receiving treatment and is relatively ok now, but we cannot predict how it will progress and how soon”. He will require treatment in the future, according to the doctors, but how can we pay for it without government assistance? The passionate plea reflects the identical appeal made by other parents of children with rare diseases throughout India.

The stress on families

In addition to battling the illness, parents of children with NF1 also have to contend with a system that does not recognise their hardship. Families are forced to shoulder the crippling burden of costly procedures, specialised consultations, and ongoing medical care in the absence of government financing and inclusion in the National Policy for Disease (NPRD). Many are compelled to manage their children’s health by relying on loans, personal savings, or charitable organisations. With tears in her eyes, Bihan’s mother declares, “Financial limitations should not determine our child’s future.” “We worry about how we’re going to pay for his next doctor’s appointment all the time. No parent should have to go through this suffering. 

A call for government action

Children like Bihan are not eligible for financial aid under government programs because NF1 is not included in the NPRD. Health professionals emphasise that NF1 patients’ quality of life can be considerably enhanced by early intervention and ongoing treatment. Access to prompt care, however, continues to be a privilege rather than a right in the absence of formal government mechanisms to support treatment. The National Policy for Rare Diseases has an outlay of INR 50 lacs per patient and this amount can be game-changing for children like Bihan. It can give them a future to look forward to and help minimise the complications of the disease. The government has designated centres of excellence to treat rare diseases, however, conditions like NF1 require multidisciplinary care, possible only in large hospitals. Bihan is lucky, he lives close to one and is being seen by a specialist. Children in smaller towns and villages are often left out due to poor and delayed diagnosis. More awareness about the condition is needed to diagnose early and initiate treatment before any organ damage happens

Advocates for patients are calling on policymakers to take immediate action. They contend that NF1 must be added to the NPRD by the government to give affected families access to resources, healthcare facilities, and research-based treatments for better illness management.
According to an advocate who works with patients who have rare diseases, “the government can change the lives of thousands by prioritising NF1.” “Children like Bihan deserve a chance at a better life. This is not just about financial aid—it’s about dignity, inclusion, and hope.” Bihan’s father has also written to the Prime minister and the Health minister and hopes his prayers will be heard.

A plea that cannot be ignored

The clock is ticking for children like Bihan. Without urgent policy changes, countless families will continue to suffer in silence, trapped by the emotional and financial toll of a rare disease that the government has yet to acknowledge.

Bihan’s parents and many others like them are pleading for their children’s right to healthcare. They are not asking for special treatment—only for the basic support necessary to give their children a fighting chance. “We just want our son to have the future he deserves,” Bihan’s father says. “Is that too much to ask?”

The responsibility now lies with the government. With the right policies in place, the future for NF1 patients can change drastically. But until action is taken, the question remains: how many more children will have to suffer in silence?