Delhi High Court constitutes committee to oversee crowd-funding for treatment of rare diseases

The Delhi High Court has constituted a four-member committee to promote and oversee crowd funding for the treatment of rare diseases [Miss Kiara Rawat Through Mrs. Lovely Gusain Vs Union Of India & Ors.]..Justice Sachin Datta passed the order on a petition filed by the mother of an infant diagnosed with Spinal Muscular Atrophy (SMA). She had sought assistance for importing a costly injection for the treatment of the rare disease suffered by her child. .The Court on October 28 set up a four member committee to encourage and oversee crowdfunding to meet the expenses for treating such rare diseases, which may require expensive treatments. The members of the committee are as follows:Chairperson: Dr. Rajiv Bahl, Secretary, Department of Health Research, Ministry of Health and Family Welfare, Government of India and Director General, Indian Council of Medical Research; Member: Dr. VK Paul, Member (Health), Niti Aayog, Government of India; Member: An officer at the level of Joint Secretary, Ministry of Civil Aviation; Member: An officer at the level of Joint Secretary in the Department of Public Enterprises, Ministry of Finance. .The mandate of the committee is as under:The committee has been asked to take adequate steps to spread awareness to encourage potential donors to make contribution for the treatment of individuals suffering from rare diseases. The committee is to sensitize Public Sector Undertaking (PSUs) about rare diseases so that they can earmark Corporate Social Responsibility (CSR) funds for the treatment purposes. The committee has been asked to ensure that necessary action is taken for effectuating the National Policy for Rare Diseases 2021 and to ensure that the outcomes contemplated under it are achieved to the maximum extent. The committee is to meet at least once month in the office of the Chairperson..The National Policy for Rare Diseases, 2021, provides for voluntary crowd-funding measures for the treatment of illnesses mentioned in it. Under the scheme, the government provides coverage of ₹50 lakhs. Taking note of the fact that the crowdfunding platform under this policy has so far accumulated only a meagre amount, the Court said its endeavor was to augment the measures to facilitate the treatment of rare diseases “The limited purpose of the present order is to ensure that suitable measures are taken to effectuate the purport of setting up of aforementioned Crowd Funding Platform and to ensure that sufficient resources can be augmented thereunder. The challenges faced by individuals suffering from rare diseases, are required to be seen through a prism of inclusion and humane lens; rather than being merely considered as a medical problem,” the Court stated. .The condition suffered by the petitioner's child, namely Spinal Muscular Atrophy, is a rare and life-threatening genetically inherited degenerative neuro muscular disease, which progressively weakens the muscles used for movement. The treatment is administered by an injection called Zolgensma developed by Novartis. The petitioner further told the Court that this injection is not available in India and has to be imported from the United States of America with a doctor’s recommendation and government’s approval.The petitioner had applied in a government hospital for importing the injection. However, due to the exorbitant cost, she was unable to import the said drug for treatment. This led her to approach the High Court for relief. .Senior Advocate Vikas Singh with advocates Varun Singh, Bhumi Sharma, Vasudha Singh, Deepika Kalia, Sudeep and Atif Ahmad appeared for the petitioner.Additional Solicitor General N Venkataraman, senior panel counsel Kushagra Kansal and panel counsel Rudra Paliwal appeared for the Union of India.Central Government Standing Counsel Ripudaman Bhardwaj also appeared for the Union of India.Standing Counsel Rajiv Kapur with Advocate Akshit Kapur appeared for SBI.Advocate Tanveer Oberoi appeared for AIIMS..[Read order].Follow Bar and Bench channel on WhatsAppDownload the Bar and Bench Mobile app for instant access to the latest legal news.