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Racefor7 promotes awareness, encourages early diagnosis, and calls for improved access to rare disease care across the country

News

By EH News Bureau On Feb 26, 2026

souces:https://www.expresshealthcare.in/news/novo-nordisk-india-partners-with-ordi-for-racefor7/452898/

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Karnataka Health Minister, Dinesh Gundu Rao flagged off the Racefor7 in Bengaluru, extending strong support to the Rare Diseases community. Addressing participants, he announced that the Karnataka State Rare Diseases Policy will be released shortly, assuring families that the Government is committed to ensuring that no Rare Disease patient is left out. Racefor7, led by Organization for Rare Diseases India (ORDI), is a nationwide awareness movement advocating for early diagnosis, equitable access to treatment, and sustainable long-term care for individuals living with Rare Diseases.

The Minister’s assurance marks a significant step forward for Karnataka’s Rare Disease ecosystem and brings renewed hope to patients and caregivers across the State.

The theme for this year’s awareness run, “Run for Rare for Lasting Care,” underscored the collective responsibility of patients, caregivers, healthcare professionals, policymakers, and the public in building a more inclusive and supportive ecosystem for the rare disease community.

Source : https://www.biospectrumindia.com/news/16/27374/karnataka-health-minister-assures-state-rare-diseases-policy-soon.html#:~:text=Home,individuals%20living%20with%20Rare%20Diseases

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Sumit Jha

Published Feb 02, 2026 | 2:32 PM ⚊ Updated Feb 02, 2026 | 2:32 PMShare

Rare diseases. (iStock)

Synopsis: Finance Minister Nirmala Sitharaman announced duty exemptions on personal imports of drugs, medicines, and Food for Special Medical Purposes for seven additional rare diseases. However, people working towards making rare disease treatments affordable question whether this measure addresses the core problem of catastrophic treatment costs.

Finance Minister Nirmala Sitharaman on Sunday, 1 February, announced duty exemptions on personal imports of drugs, medicines, and Food for Special Medical Purposes for seven additional rare diseases in the Union Budget 2026. However, people working towards making rare disease treatments affordable question whether this measure addresses the core problem of catastrophic treatment costs.

Prasanna Shirol, rare disease advocate and co-founder and director of Organisation for Rare Diseases India, welcomed the inclusion of diseases from the National Policy for Rare Diseases but challenged the impact of the exemption.

“Exemption overall is fine, but the main issue with us is, for the parents, when the cost of the drug is 50 to 75 lakh rupees per year, this small percentage of exemption will not help us,” Shirol stated. “How many people can import it? So, for us, the exemption is of no use.”

Food remains unaffordable

The budget extends exemptions to Food for Special Medical Purposes, which treats a group of conditions called inborn errors of metabolism. These conditions affect babies who lack certain chemical compositions or produce them in excess.

“These babies lack certain chemical compositions like protein and nutrients. Some babies may have high protein, some babies get low nutrients,” Shirol explained. “For that, you need to give them a special diet. If somebody has less protein, you need to give extra protein powder. If somebody is producing excess protein, then those babies require a low-protein diet.”

These conditions require management through formula diets tailored to specific chemical needs. One kilogram of this food currently costs around ₹6,000. A 10-kilogram baby requires four to five cans monthly as their main food source.

“Five cans means around ₹30,000 a month. Tell me how many people can afford ₹30,000 a month medicine consistently to their child apart from other medicines?” Shirol asked. “Exemption is what, a small percentage. It could be five percent, 10 percent, or 20 percent also, but it doesn’t help us.”

Treatment costs vary

Rare disease treatment costs span a wide range. Some babies require ₹10 lakh per month. Some children need ₹50 lakh per year. Some babies demand ₹1 crore annually. Duchenne muscular dystrophy drug costs ₹4 crore per year.

Spinal muscular atrophy presents two treatment options. One injection costs ₹16 crore. Another drug called Risdiplam, manufactured by Roche, costs ₹6,40,000 per vial.

The National Policy for Rare Diseases provides ₹50 lakh as a one-time budget. Shirol termed this insufficient, given the ongoing nature of treatment costs.

International price disparities 

Shirol pointed to price variations across countries for the same medications. Risdiplam sells at ₹40,000 in China compared to ₹6,40,000 in India.

“The Government of China negotiated with the company, brought down the price and is giving it,” Shirol stated. “So earlier, Indian patients were going to China and getting this drug. If the same drug is available at ₹40,000 in China, why not in India?”

An Indian company called Natco now manufactures the same drug and sells it at around ₹12,000. The price dropped from ₹6,40,000 to ₹12,000, demonstrating what Shirol termed “a solution”.

The government focuses on manufacturing 18 drugs in India. Three drugs currently have market authorisation. Their average cost was ₹2 crore per year. Manufacturing brought the cost down to ₹2 lakh.

Advocates demand sustainable funding 

Shirol acknowledged that domestic manufacturing takes time and requires research and development. He urged the government to adopt interim measures.

“The government should find a solution by inviting this company with a guaranteed purchase,” Shirol stated. “Some countries purchase a guaranteed ‘X’ quantity of medicine. Then there is a commitment from pharma companies to reduce it.”

The advocate questioned the utility of the current policy framework. “Today, with a policy of ₹50 lakh, it is of no use. Which company will come forward to negotiate and bring down the price?” he asked.

Rare diseases affect limited patient populations. Treatment might serve 100 or 200 patients for specific conditions. “The budget for the treatment won’t be much. Even if it’s ₹4 crore, only a few people are actually eligible to get this. That’s what the government need to do,” Shirol stated.

The duty exemption addresses import costs but leaves the fundamental affordability challenge unresolved. Families continue to face monthly expenses of tens of thousands of rupees and annual costs running into crores. Without price negotiations, domestic manufacturing incentives, or expanded funding mechanisms, the gap between policy announcements and patient access persists.

Shirol’s assessment centres on a distinction between symbolic gestures and substantive interventions. “It is the government duty to find solution talking to the pharma companies, negotiating a price,” he stated. The exemption reduces a percentage of cost on imports that most families cannot afford even at reduced rates.

(Edited by Muhammed Fazil.)

Source: https://thesouthfirst.com/health/duty-exemption-on-rare-disease-drugs-fails-to-address-affordability-crisis-says-expert/

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