June 25, 2024

Two brothers with rare disease petitioned HC to give free treatment

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  • The two children are two and three years old respectively.
  • They are suffering from Mucopolysaccharidosis II or MPS II (Hunter Syndrome, Attenuated Type).
  • The yearly value of treatment for one patient would be between 80 lakh to one crore.

THD NewsDesk, New Delhi: Two minor brothers undergoing from a rare disease have requested the Delhi High Court asking a way to the Centre and AIIMS to give them consecutive free treatment.

The two children are two and three years old respectively. They are suffering from Mucopolysaccharidosis II or MPS II (Hunter Syndrome, Attenuated Type) which is a rare disease that is carried on in families. It mainly concerns boys and their bodies cannot develop a kind of sugar that builds bones, skin, tendons and other tissues.

Justice Prathiba M Singh, before whom the matter came up for hearing, directed the Ministry of Health and Family Welfare and the All India Institute of Medical Sciences (AIIMS) to receive guidance on how the two children will be equipped with the procedure.

The plea, filed through advocate Rahul Malhotra, stated, “provide continuous and uninterrupted treatment free of cost to the petitioner for the rare disorder MPS II.”

The two brothers, in their separate petitions filed through their father Ravi Jhawar, stated they began meeting difficulties and certain variations in their bodies in September and December 2019, respectively, including delayed speech and language problems.

The children were examined by doctors at the Sir Ganga Ram Hospital and AIIMS and after examination and tests, they were diagnosed with MPS II, the plea said, adding that a second opinion also confirmed that the two children are suffering from the ailment. The treatment of the rare disease is possible and directed at the AIIMS.

The petition stated both the hospitals notified the father that there is no medicine produced in India for their disease. Only two companies in the USA and Korea produce it. It stated the yearly value of treatment for one patient would be between 80 lakh to one crore and the income of their father is trivial and it would be difficult for him to endure the price of treatment.

The petition stated, “Without the financial support of the respondent no.1 (Centre), the petitioner cannot be medically treated given the paucity of funds. The petitioner is only concerned with medicine and not with any direct financial help.”

 

Source- New Indian Express

Tags: AIIMSHunter SyndromeMPS IIMucopolysaccharidosis IISir Ganga Ram Hospital

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