A government initiative to crowdfund the treatment of patients suffering from rare diseases has drawn a tepid response since it started last year.
Under this programme, companies, individuals and others can donate online to fund the long-term and expensive treatment of patients suffering from rare diseases. Donations can be made to the treating institutions or to the patients.
While the programme offers a ray of hope to many, a few are waiting to reap the benefits of the initiative. Of the 280 patients registered for crowdfunding, 50 are in urgent need of funds, according to the government’s rare diseases portal. The response, however, has been tepid.
Chitranshu Yadav, aged 10, from Jaipur district is suffering from Gaucher disease type I & III, without significant neurological impairment, and is being treated at Maulana Azad Medical College in New Delhi. Chitranshu’s father started looking for donations and crowdfunding after doctors said his son’s treatment would cost more than Rs 81 lakh.
In 2021, he registered Chitranshu on the government’s crowdfunding portal with the aim of financing his son’s treatment through individual and corporate donors.
No help
“Till date, no one has come forward for my son’s treatment and his situation is only worsening. We did not get any help for my son’s treatment,” he said.
Gaucher disease is a rare, inherited metabolic disorder in which deficiency of an enzyme results in the accumulation of harmful quantities of certain fats throughout the body, especially within the bone marrow, spleen and liver.
Pratham Gupta was diagnosed with Duchenne Muscular Dystrophy, a rare disease, for which doctors prescribed Exondys 51 (eteplirsen) injection that costs about Rs 1 crore.
“The disease is progressive and it only aggravates the situation with every passing day. The doctors say the injection will slow down the spread of the disease and that crowdfunding is the only way I can see the situation improving,” Sunil Gupta, father of Pratham, told Moneycontrol.
The total amount of donations channelled to the government’s rare diseases portal is Rs 1.18 lakh till date, Bharti Pravin Pawar, minister of state for health and family welfare, told the Lok Sabha on March 25 in response to a question by Pilibhit lawmaker Varun Gandhi.
Comparatively, Milaap, a Bengaluru-based crowdfunding platform, has raised Rs 1,978 crore through online donations for a range of causes, including medical treatments, according to its website.
The health ministry’s response to Moneycontrol’s query on the tepid response to the government initiative is awaited.
The Centre published the National Policy for Rare Diseases in March 2021. According to the policy, for diseases/disorders amenable to one-time curative treatment (listed under Group I), the Central government will provide financial support under the umbrella scheme of the Rashtriya Arogya Nidhi of up to Rs 20 lakh to entitled beneficiaries.
The total amount released by the government for the treatment of patients with rare diseases was about Rs 14.3 crore during the past three years, according to a statement by the government on the floor of the house.
Prasanna Kumar Shirol, cofounder of the Organization for Rare Diseases India, said the government of India must commit itself to helping fund the treatment of rare diseases.
“The Union health ministry needs to show commitment for treating rare diseases. Every life has to be valued and an aggressive push from the government for donations, just like private crowdfunding entities like Milaap and Ketto, for the treatment of rare diseases is the need of the hour,” he said.
Shirol said the government should consider whether funds contributed by companies under their corporate social responsibility obligations can be used for the treatment of rare diseases.
Preeti Sudan, former health secretary who had overseen the preparation of the Rare Diseases Policy of 2021, said the public needs to be more aware of the programme and they too can benefit from the initiative.
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