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Business News/ News / India/  Government proposes crowdfunding for financially support rare disease patients
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Government proposes crowdfunding for financially support rare disease patients

Advocacy groups, however, have expressed concerns about the lack of funding support in the policy for patients diagnosed with life-threatening rare, genetic disorders

About 95% rare diseases have no approved treatment and less than 1 in 10 receiving disease specific treatment. Premium
About 95% rare diseases have no approved treatment and less than 1 in 10 receiving disease specific treatment.

NEW DELHI: The government has proposed a crowdfunding mechanism to extend financial support for treatment of rare diseases. The proposal is a part of the draft National Rare Disease Policy 2021 notified by union health ministry this week.

Under the crowdfunding mechanism, corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases. “Funds so collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as a first charge and the balance financial resources can also be used for research," the union health ministry said.

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The policy has categorised the rare diseases in three groups i.e. group 1 with disorders amenable to one-time curative treatment, group 2 with diseases requiring long term or lifelong treatment having relatively lower cost of treatment and benefit has been documented in literature and annual or more frequent surveillance is required and group 3 with diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.

The government has said it will be difficult for the government to fully finance treatment of high-cost rare diseases.

"Financial support up to Rs20 lakh under the Umbrella Scheme of Rashtriya Arogaya Nidhi shall be provided by the central government for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1)," the policy document reads. "Beneficiaries for such financial assistance would not be limited to below poverty line (BPL) families, but extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana (PMJAY), for their treatment in Government tertiary hospitals only."

Patient advocacy groups, however, have expressed concern at the lack of funding support for patients diagnosed with life-threatening rare, genetic disorders in the policy, explaining that the Union Government has left the patients with Group 3 disorders to fend for themselves.

"The new policy offers no support to the patients, awaiting treatment for a long time since the earlier National Policy for Treatment of Rare Diseases 2017 was kept in abeyance. In the absence of any funding support for the life-saving therapies, close to 130 odd patients are left with no option but to wait for the inevitable," Manjit Singh, National President of Lysosomal Storage Disorders Society of India said.

There are 7,000-8,000 rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease specific treatment. Where drugs are available, they are prohibitively expensive, placing immense strain on resources.

While the union health ministry cited the need to balance competing priorities of public health in resource constrained settings, public health experts have explained the argument as lack of proactive response to address the immediate treatment needs of 130-odd patients with treatable conditions, for which the Drugs Controller General of India (DCGI) approved therapies are already available in the country.

"Looking at the number of Rare Disease patients – diagnosed and considered eligible for treatment by the respective state technical committees, the immediate requirement of funds to support the immediate treatment needs of the diagnosed patients shouldn’t have exceeded 80-100 crore annually," Professor Viswanath Pingali health economist at Indian Institute of Management (IIM) Ahmedabad said.

Patients and their support groups had recently written to the health ministry seeking some demands before the policy is notified such as creating an immediate seed-funding of Rs80-100 crore, prioritise and encourage states with a matching grant which have demonstrated a proof of concept in providing life-saving therapy to Rare Disease patients in the country.

Three states--Karnataka, Kerala and Tamil Nadu--have already made a request to the Centre to provide an immediate matching grant to extend the treatment to more eligible patients. By doing so, the process of diagnosis and treatment would also be decentralised with the states being empowered to take a decision in favour of the Rare Disease patients, the advocacy groups have demanded.

The commonly reported diseases include primary immunodeficiency disorders, Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, fabry disease etc.) small molecule inborn errors of metabolism (Maple Syrup urine disease, organic acidemias, etc.), cystic fibrosis, osteogenesis imperfecta, certain forms of muscular dystrophies and spinal muscular atrophy.

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Published: 02 Apr 2021, 12:25 PM IST
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