The Delhi High Court has directed the Secretary, Ministry of Health and Family Welfare, not to keep the finalisation and notification of the Draft Health Policy for Rare Diseases, 2020 pending indefinitely.
Hearing the petition through video conferencing, a single-judge bench of Justice Pratibha M. Singh noted, “…the finalisation of the Draft Health Policy for Rare Diseases cannot be kept pending indefinitely, especially when common human lives are at stake.”
The petition has been filed in connection with children suffering from the rare disease, Duchenne Muscular Dystrophy (DMD), seeking direction for the government to ensure that the children are provided free treatment for this disorder, as the drug is exorbitantly expensive and is not affordable by the petitioners.
The plea stated that,
“The drug for this particular condition is stated to be at an experimental stage and is currently being manufactured by a company called Sarepta Therapeutics, USA.”
The bench observed that just because of the exorbitant price of the drug or treatment, patients, especially children, suffering from a rare disease ought not to be deprived of treatment for their condition.
The Court was further informed that in the Draft Health Policy for Rare Diseases 2020, DMD is recognised as being one of the rare diseases, the cost of treatment of which is very high. The said disease has been categorised in Group 3 of the Policy, however, the same has not seen the light of the day yet.
The bench in connection to the petitioners further directed the respondents to, “…proceed in terms of the draft policy and explore crowd funding, including through prospective individuals, corporate donors and independent foundations, which exist to fund such treatments.”
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“The Ministry shall in addition also contact the company M/s Sarepta Therapeutics, USA, which publicly advertises that it provides financial support/ medication in deserving cases, as is evident from their website. The Ministry shall come up with a proposal, with respect to the same, within the next 10 days,”
-the bench added.
The matter is listed for next hearing on January 28 for consideration of the two directions.