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The Delhi High Court has asked the Central Government to look at the feasibility of fund collected from general public to the tune of Rs 63,28,72,125.48, pursuant to an order of Kerala High Court, to be utilised for the purpose of the Rare Diseases Fund set up under the National Policy for Rare Diseases, 2021.
The Court was on Wednesday hearing a plea filed by a 41-year-old lady, seeking financial assistance from the Central Government for her medical treatment and care, on account of her being inflicted with Von-Hippel Landaou Syndromeis (VHL), an extremely rare disease.
A Single-Judge Bench led by Justice Rekha Palli was apprised by the petitioner’s counsel that pursuant to an order passed by the Kerala High Court in 2021, a fund of more than Rs 63 crore was raised by the MP and MLAs from the state of Kerala.
This particular matter was filed by father of a five-year-old child, who was suffering from a rare disease called ‘Spinal Muscular Atrophy’. The disease had no treatment other than administration of a single dose of the costliest drug in the world by the name ‘Onasemnogene,’ the cost of which was Rs 16 to 18 crore, for one dose.
The fund was raised from the general public, under the patronage of M.P. Abdussamad Samadani, Member of Parliament and under the Chairmanship of Manjalamkuzhi Ali, MLA & under coordinatorship of M. Vijin, MLA, State of Kerala.
But unfortunately, the child passed away before getting the treatment. Therefore, the Kerala High Court felt it necessary to continue hearing the matter for similarly placed children suffering from rare diseases and who are unable to afford the prohibitively expensive treatment of such diseases.
In present case, Petitioner Payel Bhattacharya, who was diagnosed with von Hippel-Lindau Syndrome (VHL), an extremely rare genetic disease, pleaded before the Delhi High Court that the said fund could be utilised for the purpose of Rare Diseases Fund set up under the National Policy for Rare Diseases, 2021.
VHL is a heritable multi-system cancer syndrome, which causes the development of various benign or malignant tumours in the central nervous system, kidneys, liver, adrenal glands, pancreas, and epididymis. Only 70 cases have been reported in India, so far.
The petitioner was diagnosed with multiple tumours in various parts of her body, and had over the course of her life, undergone surgery for many such tumours, including Liver Transplant Surgery, Partial Nephrectomy, Thyroidectomy, Craniotomy (brain surgery), and multiple radio surgery procedure for tumours of brain.
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The tumours in the petitioner’s brain have caused a rare condition known as ‘Trigeminal Neuralgia,’ which is known as the ‘suicide disease’. The petitioner was advised to undergo Proton Therapy Treatment, available only at Apollo Chennai in India. As per the estimate provided by Apollo Chennai, the treatment is likely to cost about Rs 40,00,000.
On August 4, the Central Government apprised the Delhi High Court that as directed, they have set up a crowd funding website to collect funds for patients suffering from Rare Diseases at rarediseases.nhp.gov.in. The Delhi High Court was hearing this petition, along with a batch of connected writ petitions. The next date for hearing is September 20.