Dr. Harsh Vardhan Chairs High Level Meet with Corporates to discuss Voluntary Crowd-Funding for treatment of patients suffering from Rare Diseases, and for TB-Free Corporate Spaces

Dr. Harsh Vardhan, Union Minister of Health and Family Welfare today chaired a high-level virtual meeting with Associations representing Business Corporate entities and select PSUs to discuss voluntary crowd-funding for treatment and care of patients suffering from Rare Diseases, and for TB Free Corporate spaces, here today.

At the outset, the Union Health Minister noted that the purpose of the meeting was to discuss the way forward for wider partnership with and participation of private corporate sector for noble causes that have hitherto remained unexplored. Extending his gratitude to the Corporate Sector and various PSUs for their magnanimous support to help the country tide over the second wave of the COVID-19 pandemic, he underscored the need for engagement of the private sector in filling the gap that presently exists in extending quality healthcare largely generated by resource constraint and competing health priorities, to those suffering from rare diseases in the country. He appealed to the Corporate Associations and PSUs contribute generously to the cause of treatment of patients with Rare Diseases under CSR initiatives.

Dr Harsh Vardhan said, “Globally, 8% of the population suffers from rare diseases. 75% of the survivors are children which makes parents run from pillar to post for their treatment, exhausting their resources and emotionally draining themselves in the process.”

Dr. Harsh Vardhan also enumerated the different steps taken by the Government in facilitating creation of an environment which promotes research and development of diagnostic and therapeutic interventions for rare diseases within the country: “Rare disease Committees have been constituted, nodal officers appointed and Rare Disease Fund Accounts have also been created at notified eight Centres of Excellence (COEs). Nidan Kendras in UMMID programme have been opened for genetic screening. A Research consortium under DHR with ICMR, DBT,CSIR for low-cost therapeutics for rare diseases and repurposing of drugs has been created to enable their study.” He further added that the CSIR runs the largest free exome (DNA)-sequencing program for rare disease diagnosis (GuARDIAN scheme), while CDSCO has made provisions for fast-track processing of applications for new drugs for rare diseases under New Drugs and Clinical Trials Rules,2019 for drug trials & experimental therapies and have exempted application fee of potential drug candidates. The Ministry of Finance is similarly working to reduce custom duties on import of specific drugs used in treatment.

The Union Health Minister also mentioned about the National Digital Portal for Crowd Funding created by MoHFW that will enable donors from various sections of the society i.e. individuals, and corporate donors to donate funds, to contribute recourses through crowd funding to support treatment and care of patients suffering from rare diseases.  “This is an unique initiative by the Health Ministry and for the first time such a government portal for crowd funding has been created”, he stated. The Corporate sector and PSUs can fund research into these diseases or adopt children with rare conditions for their treatment and therapy, he added.

The Minister pointed out that expanding access to accurate TB screening and diagnostic tools like NAAT, digital X-ray with Artificial Intelligence has immensely aided timely detection of the TB cases in the country. High quality drugs, digital technologies, multi-sectoral community engagements, integrating TB services across all levels of our health system are all aligned to rapidly push down the TB incidence and mortality curve in the country. “Under the able leadership of our Prime Minister, Shri Narendra Modi ji, India has demonstrated unprecedented political commitment to End TB by 2025, five years ahead of the SDG target of 2030.”

Dr. Harsh Vardhan expressed his deep desire to eliminate TB by 2025, in the same manner as Polio. “My experience with Polio from the year 1984 to 2012 when India was finally certified Polio free,informs me that tasks of such herculean proportion need proactive participation of the civil society, leaders of the industry and staunch political commitment. Many international institutions like WHO were involved in the eradication of Polio. We are repeating the same drill to fulfil Prime Minister Shri Narendra Modi Ji’s dream of a TB free India by 2025.” He added that he personally reviews the progress made on various fronts in elimination of TB, with the multiple stakeholders on the 24th of every month.

Dr Harsh Vardhan praised the diverse group of audience present in the meeting, like several corporates, industries with domain expertise in areas like Technology, Supply Chain Management, Research & Development, Communication, etc., and called upon them to join hands in the fight against TB and to forge this to the advantage of our country’s well-being. He also called upon every participant to take pledge to support the fight against TB, so that Ending TB in India by 2025 and globally by 2030 becomes a reality. He also urged everyone to engage themselves proactively with the cause of Rare Diseases and TB free work spaces.

Shri Rajesh Bhushan, Secretary (HFW), Ms. Arti Ahuja, Addl. Secy (H), Ms. Rekha Shukla, JS, and other officials from the Ministry were present. Representatives from PSUs under Corporate Affairs and the Public Sector Enterprises under Ministry of Petroleum & Natural Gas (Indian Oil Corporation Limited,ONGC,GAIL), Ministry of Coal (Coal India, Neyveli Lignite Corporation), Ministry of Power (NTPC, NHPC, Power Grid Corporation of India, Rural Electrification Corporation Limited), Ministry of Steel (SAIL),Ministry of Defense and Department of Public Enterprises, Ministry of Ports, Shipping & Waterways, Ministry of Heavy Industries (Mazagon Docks Shipbuilders, Goa Shipyard) and other Public Sector Enterprises like Hindustan Aeronautics Limited (HAL),etc., were present at the event. Representatives from the Centres of Excellence notified for Rare Diseases also attended the event.

Representatives of CII, FICCI, ASSOCHAM, PHD-CC were also present.

The meeting was live streamed at: