A drug, custom-made in The Hague, for 7 kids in India

Tiratricol is a medicine known since 1953 and used in France since 1974 for thyroid conditions. Research at Erasmus University Medical Centre found that it could reduce the physical manifestations of Allan Herndon-Dudley Syndrome, or MCT8 deficiency. The finding matters because the affected children have severe developmental problems and need continuing treatment.

Seven children in India have AHDS. Dutch and Indian physicians, civil society groups, and the Pharmaceutical Accountability Foundation are helping make tiratricol available. Transvaal Pharmacy in The Hague will compound it in small quantities. The planned price is 1.8 euro per capsule, far below the commercial German price of almost 180 euro per tablet.

The arrangement is an emergency measure. One family currently spends Rs 3 lakh each month importing the medicine from Germany. Because treatment is lifelong, that cost is unsustainable. The groups are also pursuing affordable production and registration in India, which could support generic production later.

Pharmaceutical compounding is the process of making a medicine in small, custom-made quantities. It can help when patients need a medicine that is unavailable, unaffordable, or not supplied in a suitable way. In this case, compounding offers access without waiting for a large commercial supply or Indian registration.

Transvaal Pharmacy in The Hague is preparing tiratricol capsules for the children. The pharmacy will make only the quantity needed for this group, rather than manufacturing a mass-market product. The planned price is 1.8 euro per capsule. Dutch and Indian physicians, civil society organisations, and the Pharmaceutical Accountability Foundation coordinated the effort.

Compounding does not solve every access problem. The article describes it as an emergency fix, not a permanent supply system. The groups are therefore also working toward affordable production and registration in India. Registration could eventually allow generic manufacturers to produce tiratricol locally, potentially improving long-term access.

The compounded medicine is planned to cost 1.8 euro per capsule. The commercial tiratricol sold by Swedish company Egetis in Germany costs almost 180 euro per tablet. The article describes the compounded price as 99 times cheaper. This gap shows how sharply the form of supply and market pricing can affect access to a rare-disease medicine.

The cost is already creating a severe burden for at least one family. That family imports tiratricol from Germany and spends Rs 3 lakh per month. The medicine is prescribed for life, so the expense is not a short-term bill. Continuing to pay it indefinitely is proving unsustainable.

The Hague compounding effort is intended to reduce the immediate cost for seven children in India. It is not the final answer, because pharmacy compounding is described as an emergency fix. PAF and Indian partners are seeking registration and affordable production in India to support generic supply in a few years.

Allan Herndon-Dudley Syndrome is a rare disease also called MCT8 deficiency. It results from a genetic defect affecting how thyroid hormones reach the brain. The article says the condition leads to severe developmental issues. Seven children in India are identified as having the syndrome.

In practical terms, the children’s thyroid hormones are unable to reach their brain cells effectively. The article does not provide a more detailed biological pathway, but it links this impaired access to the disease’s serious developmental effects. Research at Erasmus University Medical Centre found that tiratricol could reduce the physical manifestations of AHDS.

The condition creates a need for long-term treatment and reliable supply. Tiratricol has been known since 1953 and has been marketed in France since 1974 for thyroid conditions. The current effort aims to make it accessible to the affected children while longer-term Indian production and registration are pursued.

When tiratricol is prescribed for life at nearly 180 euro per tablet, treatment becomes financially difficult to sustain. The article gives one family’s current cost as Rs 3 lakh per month. That burden does not end after a short course, because the child is expected to keep taking the medicine.

The family is importing tiratricol from Germany, where Egetis sells the commercial drug. The high price contrasts with the 1.8 euro per capsule planned for the compounded version. The article says this compounded supply is 99 times cheaper. Dutch and Indian groups are arranging it for seven children with AHDS.

Compounding offers immediate relief, but only temporarily. The Pharmaceutical Accountability Foundation and Indian partners are working toward affordable production and registration in India. If that effort succeeds, generic production could begin in a few years and provide a more sustainable supply than repeated imports or emergency compounding.

Pharmacy compounding can quickly provide small quantities for individual patients, but it is not presented as a permanent solution. It currently addresses the needs of seven children rather than creating broad, stable access across India. A long-term system needs an affordable product that can be produced and supplied reliably.

The planned compound from Transvaal Pharmacy costs 1.8 euro per capsule. That is dramatically below the almost 180 euro commercial tablet sold in Germany. The pharmacy’s work helps families avoid an unaffordable import bill while the wider access problem is addressed. One family currently spends Rs 3 lakh per month.

PAF is working with access-to-medicine activists and Indian paediatricians on affordable production and registration of tiratricol in India. Registration could enable local manufacturers to begin generic production. The article says this could happen in a few years, offering a more durable alternative to imported commercial medicine and emergency compounding.

The article shows how different stages of medicine development can shape access. Erasmus University Medical Centre used 14 million euro in public funding for research that found tiratricol could treat AHDS. The centre later sold the intellectual-property rights to Egetis without a “fair price clause”. That meant the deal did not include a stated condition requiring affordable pricing.

Egetis received European marketing authorisation in 2025. Under European orphan-drug legislation, this granted 10 years of market exclusivity for tiratricol. Exclusivity limits competing commercial supply during that period, giving the authorised company strong control over the market. By 2026, the German price had risen to almost 180 euro per tablet, from 0.35 euro in France in 2017.

The article does not describe a specific patent. In general, patents can also give holders time-limited control over commercial production. Here, the stated exclusivity and the earlier intellectual-property transfer are the key mechanisms linked to control and pricing. PAF calls Egetis’s pricing model unethical and is pursuing Indian access alternatives.