Over 300 Pediatric Rare Disease Patients in India Await Funds for Treatment

According to a story from Kalimpong News, over 300 children with rare diseases in India are still waiting for the release of pledged funds from the Union Health Ministry so that they can receive much needed treatment. The patients are being supported by the Rare Diseases India Foundation, which has been calling on Mansukh Mandaviya to take action that would allow the eight hospitals in the country that are designated as centers of excellence for rare disease to start treating them.

Most of the children in question are less than 15 years old and are affected by a variety of rare disorders, such as Fanconi anemia, Gaucher disease, and Fabry disease. On May 19, the Health ministry boosted the one-time financial support for each patient from Rs 20 lakh to Rs 50 lakh under the National Policy for Rare Diseases. The change also expanded the range of support from patients that only needed a one-time treatment to rare diseases of any category.

As exciting as this sounds, the fact remains that no treatment has been started. The foundation called on Mandaviya to give “clear approval” and operational guidelines to the centers of excellence so that treatment could begin. An official from the ministry indicated that the funds would be released soon, but every delay in treatment can be costly for rare disease patients.

Speaking of costs, the patient families are almost entirely dependent on government support as the treatments are incredibly expensive.

The National Policy on Rare Diseases also aims to lower the incidence of the illnesses through preventative measures, such as pre-martial, pre-conception, and post-conception counseling, as well as genetic screening. There is also an emphasis on targeted illnesses that can be cured with a one-time treatment or that are relatively less costly to treat, with the hope that a greater number of patients can be helped.

Unfortunately, the policy is less useful for patients that require long-term or lifelong treatment.

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