Vardhan chairs meet to discuss crowd-funding for treatment of rare diseases, TB-free spaces

New Delhi, Jun 17 (PTI) Union Health Minister Harsh Vardhan on Thursday 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 TB-free corporate spaces.

The minister said the purpose of the meeting was to discuss the way forward for wider partnership with and participation of the private corporate sector for noble causes that have hitherto remained unexplored, a Health Ministry statement said.

Extending his gratitude to the corporate sector and various Public Sector Undertakings for their support to help the country tide over the second wave of the COVID-19 pandemic, Vardhan 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, it said.

He appealed to the corporate associations and PSUs to contribute generously to the cause of treatment of patients with rare diseases under CSR initiatives.

“Globally, eight percent of the population suffers from rare diseases. Seventy five percent 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," the minister was quoted as saying in the statement.

Vardhan also enumerated the different steps taken by the government in facilitating the 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,” he said.

“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 added.

The minister further added that the CSIR runs the largest free exome (DNA)-sequencing programme 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 and experimental therapies and have exempted application fee of potential drug candidates, the statement said.

The Ministry of Finance is similarly working to reduce custom duties on import of specific drugs used in treatment, Vardhan said.

He 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, contribute recourses through crowd-funding to support treatment and care of patients suffering from rare diseases.

“This is a 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, Vardhan 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, the statement said.

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, he said.

“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," Vardhan said.

He also called upon every participant to take a pledge to support the fight against TB, so that ‘Ending TB in India by 2025’ and globally by 2030 becomes a reality, the statement said.

He also urged everyone to engage themselves proactively with the cause of rare diseases and TB-free workspaces, it added. PTI PLB AQS AQS