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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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New Delhi: Finance Minister Nirmala Sitharaman Sunday announced a full exemption from basic customs duty on 17 life-saving drugs including cancer drugs. She also included seven additional rare diseases that will now qualify for duty-free personal imports of medicines, drugs, and Foods for Special Medical Purpose (FSMP).

Presenting her 9th straight budget, Sitharaman said the government wanted to ease the financial burden on families that depend on imported drugs. “To provide relief to patients, particularly those suffering from cancer, I propose to exempt basic customs duty on 17 drugs or medicines,” she said.

The 17 cancer drugs are: Ribociclib, Abemaciclib, Talycabtagene autoleucel, Tremelimumab, Venetoclax, Ceritinib, Brigatinib, Darolutamide, Toripalimab, Serplulimab, Tislelizumab, Inotuzumab ozogamicin, Ponatinib, Ibrutinib, Dabrafenib, Trametinib and Ipilimumab.

These are targeted therapies or immunotherapies used in breast cancer, brain tumours and melanoma.

The new list adds to the 36 life-saving drugs and medicines which were fully exempt from basic customs duty in the budget last year. The 2014 list included drugs for rare diseases, other serious chronic illnesses, and three specific cancer drugs, including Trastuzumab Deruxtecan, Osimertinib, and Durvalumab.

Imported cancer drugs in India attract a basic customs duty of 10 percent, while some categories of lifesaving drugs/vaccines attract a concessional rate of 5 percent, which has now been made zero for these drugs.

Cancer is a major and growing public health challenge in India. The disease imposes catastrophic health expenditure in India, with medicines constituting more than 60 percent of out-of-pocket expenditure.

Research has shown wide price variations and limited cost containment for cancer drugs.

Last year, a parliamentary committee asked the government to impose price caps on certain cancer medicines. A Tata Memorial Centre study found that fewer than 3 percent of Indian cancer patients have access to newer, promising treatments.

Dr Kanika Sood Sharma, Director of Radiation Oncology at Dharamshila Narayana Hospital, said that while the exemption could help more patients access newer cancer treatments, especially targeted therapies and immunotherapies, only a small segment of patients would benefit.

Over the last two decades, she said, cancer treatment has changed sharply with the arrival of these drugs.

“In a few malignancies, they have been life-changing,” Sharma said. She said that around 20 years ago, patients with metastatic lung cancer typically survived for nine to eleven months. Even for stage three disease, five-year survival rates were low despite aggressive chemotherapy and radiation. “Many drugs like durvalumab, which came as adjuvant therapy, have increased survival,” she said.

According to Sharma, the main barrier to using these drugs widely has been cost. She said that when customs duty is removed, a few more patients become eligible by virtue of their ability to afford that drug.

Referring to the list of drugs exempted this year, she said that these are not basic medicines, but high-end drugs often used as second- or third-line treatment.

“I do not think it would go to the grassroots level,” she said. “These are mostly tertiary care-based drugs, used in specialised, mostly private settings.”

Rare diseases

In her budget announcement, FM Sitharaman also said that seven additional rare diseases will now qualify for duty-free personal imports of medicines, drugs, and special medical foods (FSMP), making these essential treatments cheaper and easier for patients to bring into India.

The seven rare diseases added to the duty-exempt list are Congenital Hyperinsulinemic Hypoglycaemia (CHI), Familial Homozygous Hypercholesterolaemia, Alpha-Mannosidosis, Primary Hyperoxaluria, Cystinosis, Hereditary Angioedema, and Primary Immune Deficiency Disorders.

All of these conditions are already covered under the National Policy for Rare Diseases (NPRD), 2021.

With this, a total of 58 diseases will now be considered for the exemption.

Prasanna Shirol, co-founder and executive director of Organisation for Rare Diseases India (ORDI), said, “No individual patient can afford to import these, even after the exemption,” he said. “If the drug costs Rs 75 lakh to Rs 1 crore per year, which patient will be able to afford it.” Shirol said the exemption on special formula diets and FSMPs may help some families, but only a limited section.

“By reducing the import duty, the treatment may extend another one or two months,” Shirol said.

He pointed out that similar exemptions have been announced in earlier budgets, with more drugs added each year, but the core problem remains. What patient groups are asking for, Shirol said, is not duty exemption but assured and consistent government funding.

(Edited by Ajeet Tiwari)

Source : https://theprint.in/health/budget-cuts-import-costs-of-17-cancer-7-rare-disease-drugs-why-it-offers-little-relief-to-patients/2842842/

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