The Delhi High Court was informed by the Centre on Wednesday that it has made operational a digital platform for crowd funding of the expensive medicines and treatment for rare diseases. While appreciating the efforts, the high court asked the Centre to update the portal on a regular basis and to take steps for wide publicity of the platform to utilise its full potential.
Justice Rekha Palli also asked the government to include names of petitioners, suffering from rare diseases, on the portal. The high court, had on July 14, said it would take action for “wilful non-compliance" if the Centre failed to make operational the digital platform for crowd funding for rare diseases.
During the hearing, Additional Solicitor General Chetan Sharma, representing the Centre, said the portal http://rarediseases.aardeesoft.com has become operational and assured that sincere efforts are being made to motivate public sector undertakings and corporate to contribute through the portal. The court further asked the Centre to examine the suggestions made by advocate Ashok Agarwal, who appeared for several of the petitioner children, for the platform and file its response within six weeks.
It listed the matter for further hearing on September 20. It had earlier said despite specific directions on January 28 that the digital crowd funding platform be made operational by March 31, it has not been done.
The court was hearing a batch of petitions on behalf of children suffering from rare diseases, including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), and seeking 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 weakness. MPS II is a rare disease that is passed on in families and it mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
On January 28, the court had passed an order directing the central government to make operational the digital crowd funding platform for medicines and treatment for rare illnesses.
On March 23, the court had passed a slew of directions in connection with the treatment of persons with rare diseases, including a direction to notify the National Health Policy for Rare Diseases by March 31 and setting up a National Consortium for Research, Development and Therapeutics, a rare diseases committee at AIIMS and a fund for such ailments.
It had directed that the entire unspent budget allocated for rare diseases for the past three years shall be immediately moved into the rare diseases fund, which shall be managed, supervised and utilised by nodal agency AIIMS.
The digital platform created under the Policy for receiving crowd funding shall be linked to the fund and those individuals and companies wishing to contribute shall make direct contributions into it, the court had said.