Globally, eight per cent of the population suffers from rare diseases; 75 per cent of the survivors are children which makes parents run from pillar-to-post for their treatment, informed Dr Harsh Vardhan during the meet
Union Minister of Health and Family Welfare Dr Harsh Vardhan yesterday 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.
At the outset, the minister noted that 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.
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 currently 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 to contribute to the cause of treatment of patients with rare diseases under CSR initiatives.
Dr Vardhan said, “Globally, eight per cent of the population suffers from rare diseases; 75 per cent 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.”
He also enumerated the different steps taken by the Government of India in facilitating the creation of an environment which promotes research and development of diagnostic and therapeutic interventions for rare diseases within the country.
He said, “Rare disease committees have been constituted, nodal officers appointed and Rare Disease Fund (RDF) 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 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 Ministry of Finance is similarly working to reduce customs duties on the import of specific drugs used in treatment.
The minister also mentioned 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 for supporting 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, he added.
The minister also pointed out that expanding access to accurate TB screening and diagnostic tools like NAAT, digital X-ray with Artificial Intelligence (AI) has 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 Narendra Modi, India has demonstrated unprecedented political commitment to End TB by 2025, five years ahead of the SDG target of 2030,” he said.
Dr Vardhan also talked about eliminating 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 fulfill Prime Minister Narendra Modi Ji’s dream of a TB-free India by 2025.”
He also informed that he personally reviews the progress made on various fronts in the elimination of TB, with the multiple stakeholders on the 24th of every month.