In draft policy govt. has proposed crowd-funding for treatment of high-cost rare diseases
The Delhi High Court on Thursday directed the Centre to finalise the National Health Policy for Rare Diseases of 2020 by March 31 and make operational provision of crowdfunding envisaged under the law for treatment of high-cost rare diseases.
Justice Prathiba M. Singh passed the direction while hearing two different pleas concerning children, who are suffering from duchenne muscular dystrophy, a condition that causes progressive muscle degeneration and weakness in the victim.
The court issued the direction to finalise the policy and operationalise the digital platform by March 31after the Health Ministry has, in an affidavit, said both things were only “likely” to be done by March 31. The draft policy has a section where the government proposed crowdfunding for treatment of high-cost rare diseases. The section says that in certain cases, since the government cannot fully finance the treatment, the gap can be filled by seeking donations from prospective individuals or corporate donors who are willing to support the cost of such diseases.
However, the draft policy was introduced in 2020 for consultation and in the meantime, the earlier policy of 2017 was kept in abeyance by the government.
The High Court also asked the Ministry to write to the U.S.-based company – Sarepta Therapeutics – which manufactures the experimental drug used for treatment of DMD, enquiring whether they would consider providing the medicine free of cost to the two children whose families cannot afford the exorbitantly priced drug.
During the hearing, All India Institute of Medical Sciences (AIIMS) said it does not have the funds required to procure the drug for the two children funds worth crores were to be released to it by the Central government.
The parents of the two children had sought direction to the government to ensure that their children are provided free treatment for this disorder as the drug is exorbitantly expensive and is not affordable by them.
Justice Singh had earlier opined 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.
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