New Delhi Aug 12(ILNS): The Delhi High Court on Wednesday asked the Central Government to look at the feasibility of funds collected from the general public to the tune of Rs 63,28,72,125.48/- pursuant to an order of Kerala High Court, to be utilized for the purpose of the Rare Diseases Fund set up under the National Policy for Rare Diseases, 2021
The Court was 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 Syndrome is (VHL), an extremely rare disease.
A single-judge bench comprised by Justice Rekha Palli was apprised by the petitioner’s counsel that pursuant to order was passed by the Kerala High Court in W.P(C) 7894/2021 Arif v. State of Kerala & Ors. a fund of Rs more than 63 crores was raised by MPs and MLA from the State of Kerala. This particular matter was filed by the father of a five-year-old child who was suffering from a rare disease called “Spinal Muscular Atrophy.” They said the rare disease had no treatment other than the 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 crores, 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 coordinators of M. Vijin, MLA, State of Kerala.
But unfortunately, the Child died before he gets 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.
Before the Delhi High Court, the petitioner has pleaded that the said fund could be utilized for the Rare Diseases Fund set up under the National Policy for Rare Diseases, 2021.
The petitioner is Payel Bhattacharya who was diagnosed with von Hippel-Lindau Syndrome (‘VHL’), an extremely rare genetic disease, with only about 70 reported cases in India. VHL is a heritable multisystem cancer syndrome, which causes the development of various benign or malignant tumors, in the central nervous system, kidneys, liver, adrenal glands, pancreas, and epididymis. The Petitioner has been diagnosed with multiple tumors in various parts of her body, and has over the course of her life has undergone surgery for many such tumors, including Liver Transplant Surgery, Partial Nephrectomy, Thyroidectomy, Craniotomy (brain surgery), and multiple radiosurgery procedures for tumors of the brain.
The tumors in the Petitioner’s brain have caused a rare condition known as ‘Trigeminal Neuralgia, which is known as the “suicide disease”. The Petitioner has been advised to undergo Proton Therapy Treatment. The Proton Therapy Treatment facility in India is available only in Apollo Chennai, and as per the estimate provided by Apollo Chennai, the treatment is likely to cost about Rs. 40,00,000.
On August 4, 2021, the Central Government apprised The Delhi High Court that as directed they have set up a crowdfunding 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 bunch of connected writ petitions.
The next date for the hearing is September 20, 2021./ILNS/SR/KR/SNG