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Key Points

The Indian government's PLI scheme has dramatically reduced the cost of rare disease treatments, with some drugs seeing a 95% price reduction. Amit Agrawal, Secretary of the Department of Pharmaceuticals, highlighted that rare diseases collectively affect about 5% of the population. He emphasized viewing the issue through a human lens of inclusion, not just as a medical problem. The official also urged corporates to support rare disease patients through CSR initiatives and called for inclusive policy reforms.

Key Points: PLI Scheme Slashes Rare Disease Treatment Costs by 95 Percent

  • PLI scheme supported eight drugs including Eliglustat for Gaucher’s Disease
  • Treatment costs dropped from Rs 1.8–3.6 crore to Rs 3–6 lakh annually
  • Rare diseases collectively affect nearly 5 percent of India's population
  • Agrawal called for CSR initiatives and inclusive policy design for patients
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PLI scheme has significantly brought down cost of rare disease treatment: Govt

Govt reports PLI scheme cut rare disease drug costs from crores to lakhs annually, with Amit Agrawal citing PM Modi's vision for affordable medicine.

"We are known as the pharmacy of the world but isn’t it the need of the hour to invest in research and development? - PM Narendra Modi"

New Delhi, Aug 21

Rare diseases were included as a focus area under the production-linked incentive (PLI) scheme for pharmaceuticals, which has considerably brought down the treatment cost, an official statement from Ministry of Chemicals and Fertilisers said on Thursday.

Eight drugs for rare conditions have been supported under the PLI scheme, including Eliglustat for Gaucher’s Disease, where the cost of treatment has come down from Rs 1.8–3.6 crore annually to Rs 3–6 lakh, according to Amit Agrawal, Secretary, Department of Pharmaceuticals.

Other supported treatments include Trientine for Wilson’s Disease, Nitisinone for Tyrosinemia Type 1 and Cannabidiol for Lennox–Gastaut Syndrome, among others. He noted that such tangible reductions in treatment costs demonstrate the transformative potential of targeted policy interventions.

Agrawal delivered a special address during the inaugural session of the ‘Rare Diseases Conference 2025’ at FICCI auditorium.

He commended the organisers for bringing focus to an issue of growing significance that has historically not received adequate attention.

He underlined that although rare diseases may appear infrequent individually, collectively they affect nearly one in every twenty individuals — around 5 per cent of the population — making them a major public health concern.

Agrawal also emphasised that the rare disease challenge should be seen through a human lens and as a question of inclusion, not merely a medical or technical problem.

Citing the Prime Minister Narendra Modi’s inclusive vision of ‘Divyangjan’, Agrawal called for a response from government, industry, academia and civil society to address the multifaceted burden faced by patients and caregivers.

Referring to the Prime Minister’s Independence Day address, he recalled: “We are known as the pharmacy of the world but isn’t it the need of the hour to invest in research and development? Shouldn’t we be the ones providing the best and most affordable medicines for the welfare of humanity?”

The Secretary also encouraged corporates to factor in rare disease patients under their CSR initiatives and patient assistance programmes, considering the heavy financial and emotional burden on affected families.

He urged all stakeholders to evaluate their policies, regulations, funding models and programme designs through the lens of inclusivity. He suggested exploring special pathways or regulatory exemptions to address the unique needs of the rare disease community.

—IANS

- IANS

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Reader Comments

R
Rohit P
Finally some good news from the government! PLI scheme is actually working for common people. Hope they expand this to more rare diseases. India truly becoming pharmacy of the world 💪
S
Sarah B
As someone working in healthcare, I appreciate the focus on inclusion. Rare diseases affect millions collectively even if individually they're rare. More awareness needed!
A
Amit G
Good initiative but implementation is key. Hope these medicines actually reach patients in tier 2/3 cities and rural areas. Often schemes look good on paper but ground reality different.
N
Nisha Z
ॐ शांति! This is what development should look like - helping the most vulnerable. Corporate India should definitely step up CSR for rare diseases as suggested.
M
Michael C
Impressive cost reduction! From 3.6 crore to 6 lakh is phenomenal. Shows what targeted policy can achieve. Other countries should learn from India's pharmaceutical innovation.

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