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Firstpost Story Sparks India-Netherlands Effort for Affordable Tiratricol
Arav is a young boy in India who has a very rare genetic condition called Allan-Herndon-Dudley Syndrome.
His body cannot move an important thyroid hormone into his brain in the usual way.
A medicine called tiratricol may be able to take a different route into brain cells.
The medicine is not sold in India, and importing it from Germany is very expensive.
A story about Arav led people in the Netherlands and India to contact his family and doctor.
They formed a WhatsApp group to look for a safer and less expensive way to obtain the medicine.
One idea is to bring in the medicine’s pharmaceutical-grade raw material and prepare it in India.
Any such preparation would have to meet Indian safety and regulatory rules.
The group hopes this could help Arav and other children who need the treatment.
A Firstpost story about 20-month-old Arav Deb prompted Dutch and Indian experts to seek better access to tiratricol.
Arav has Allan-Herndon-Dudley Syndrome, which prevents thyroid hormone T3 from reaching the brain properly.
Tiratricol is unavailable in India, while importing it from Germany costs Arav’s family about Rs 3 lakh per month.
The Pharmaceutical Accountability Foundation is exploring whether pharmaceutical-grade tiratricol can be compounded safely and legally in India.
The initiative currently involves a family, paediatricians, medicine-access experts and activists, with six potentially affected children identified in India.
- Who
- Arav Deb’s family, his paediatrician, Indian medicine-access activists, Dutch medicine-access experts and potential Indian pharmaceutical partners.
- What
- They are exploring an affordable, quality-assured way to obtain or compound tiratricol for children with Allan-Herndon-Dudley Syndrome.
- Where
- The initiative connects people in India and the Netherlands, with possible medicine importation from Germany and local compounding in India.
- When
- The effort began after people in the Netherlands read and shared a Firstpost story about Arav.
- Why
- Tiratricol is unavailable in India, and importing it from Germany reportedly costs Arav’s family about Rs 3 lakh per month.
Local access and affordable compounding
Regulatory and quality safeguards
How to reduce the medicine’s price
Local access and affordable compounding
The Pharmaceutical Accountability Foundation and Indian medicine-access advocates argue that tiratricol is an old molecule whose high orphan-drug price may be difficult to justify, and that local compounding could improve access.
Regulatory and quality safeguards
The initiative has not yet produced a finished solution; any Indian product would need to meet regulatory requirements and use raw material of appropriate quality.
Immediate treatment versus long-term supply
Local access and affordable compounding
The family and its supporters are seeking an immediate special-access route while exploring an affordable domestic source for Arav and other children.
Regulatory and quality safeguards
The foundation says it will not manufacture the medicine itself and is only sharing information; the practical route to safe, legal production remains under development.
Key facts
- Patient
- Arav Deb, a 20-month-old Indian child
- Condition
- Allan-Herndon-Dudley Syndrome, also known as MCT8 deficiency
- Medicine
- Tiratricol, also called TRIAC or triiodothyroacetic acid
- Current import cost
- About Rs 3 lakh per month, according to Arav’s family
- Potential Indian patients
- A paediatrician involved in the effort currently knows of six children who may need tiratricol
- Proposed approach
- Import pharmaceutical-grade raw material and compound the medicine in India under appropriate standards
- Organising group
- The Pharmaceutical Accountability Foundation, a Netherlands-based medicine-access nonprofit
Quotes
Wilbert Bannenberg
Chairperson of The Pharmaceutical Accountability Foundation
“Since this is an old chemical component and the active pharmaceutical ingredient (API) is readily available globally, this medicine is a strong candidate for local production. The government must step up and prioritise domestic manufacturing as part of a concrete strategy to make rare disease treatments locally accessible,”
firstpost.com
“Getting the medicine for four months is costing us Rs 12 lakh; we cannot afford it long term. This initiative brings in new hope for Arav and the family,”
firstpost.com
Sources
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