New Delhi, Dec 22 (PTI) The Delhi High Court on Thursday directed the Centre to release over Rs 5 crore towards a clinical trial for development of an indigenous therapy for Duchenne Muscular Dystrophy, an inherited disorder of progressive muscular weakness, and voiced concern over efforts at crowd-funding for treating rare diseases among children not bearing the desired results.
It also suggested including donations towards treatment of rare diseases as part of Corporate Social Responsibility under the Companies Act to facilitate more voluntary contributions.
Terming the development of therapeutic treatment for children suffering from rare diseases “a nationally important project”, it asked the Union government to consider publicising the issue on various platforms to attract more voluntary donations.
The court was hearing a batch of petitions filed on behalf children suffering from rare diseases.
The petitioners, who are suffering from several rare diseases including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), have sought a direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy is very expensive.
DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive muscle weakness. MPS II is a rare disease that is passed on in families and mainly affects boys as their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
“The magnitude of the problem which is being suffered by children with rare diseases leaves no doubt in the mind of the court that the creation of treatment therapeutic for children with rare diseases would be considered as a nationally important project,” Justice Prathiba M Singh said. “In so far as crowd funding is concerned, it is clear that so far the efforts have not yielded much results as the issue of rare diseases does not appear to have gained enough importance in society in general. Thus the Health Ministry could consider publicity on platforms including radio and television or publicity through other media in order to attract more voluntary donations for rare diseases,” she said. The court also asked the Ministry of Corporate Affairs to state its stand on the request by the Health Ministry to include donations towards treatment of rare diseases as part of Corporate Social Responsibility under the Companies Act to facilitate more donations. “In order to ensure that there is a specific recognition for donation for rare diseases, the court is of the opinion that donation for rare diseases ought to be included in schedule 7 of the companies act,” the court said. The Centre said its crowd-funding platform was being publicised by using proper and effective channels.
The court was also informed that the Department of Public Enterprises has been asked to create a programme for sensitising public sector undertakings and guidelines and procedures for giving financial assistance to patients with rare diseases have also been approved by the competent authority and communicated to the Centres of Excellence. The court noted the company scheduled to conduct the clinical trials with regard to DMD in pursuance of an agreement with the Biotechnology Industry Research Assistance Council (BIRAC) was unable to start it due to lack of funds.
While directing BIRAC to release over Rs 5.35 crore towards the trial in terms of the agreement, the court said with the project having been declared as a nationally important project, the intellectual property will rest with the government.
It accordingly directed that the agreement between the two entities be drawn afresh and placed before it.
The matter will come up for resumed hearing on January 30. PTI ADS SK SK
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