For the family of a child living with a rare genetic disorder, getting a life-saving medicine can become a financial struggle that never ends. One Indian family is currently spending around ₹3 lakh every month to import a medicine from Germany. Since the child needs the drug for life, the expense has become increasingly difficult to manage.
Now, help is coming from the Netherlands. Doctors and social organisations in India and the Netherlands have joined hands to arrange an affordable supply of the medicine for seven Indian children suffering from a rare condition. A pharmacy in The Hague is preparing the drug at just €1.80 (Approx. ₹190) per capsule, compared with the €180 (Approx. ₹19,000) price of a commercial tablet sold in Germany.
The medicine, called tiratricol, is being specially prepared through a process known as compounding. It involves making small quantities of customised medicine according to a patient’s needs.
The initiative offers some relief to families who have been struggling to afford treatment. But it also raises a larger question about why a medicine that can be prepared at a much lower cost is so expensive when sold commercially.
The seven children suffer from Allan-Herndon-Dudley Syndrome (AHDS), also known as MCT8 deficiency. It is an extremely rare genetic condition.
Because of a genetic defect, thyroid hormones cannot properly reach the brain cells. These hormones play an important role in brain development and other body functions. Their inability to reach the brain can lead to serious developmental problems in affected children.
Tiratricol is not a new medicine. It was first identified in 1953 and has been available in France for treating thyroid-related conditions since 1974.
Research conducted by doctors at Erasmus University Medical Centre (Erasmus MC) found that the medicine could also help reduce the physical symptoms of AHDS.
For families dealing with this condition, access to the drug can make a significant difference. However, its high commercial price has made regular treatment difficult.
The medicine’s use for treating AHDS was identified through research at Erasmus MC in 2014. The research received €14 million in public funding.
However, the institution later transferred the intellectual property rights to Swedish pharmaceutical company Egetis without including a condition requiring the medicine to be sold at a fair price.
In 2025, Egetis received approval to market the medicine in Europe. Under European orphan drug rules, the company received 10 years of market exclusivity.
This was followed by a sharp rise in its price. A medicine that reportedly cost €0.35 (Approx. ₹37.11) in France in 2017 was being sold in Germany for €180 per tablet by 2026.
The difference is enormous. For families whose children need the medicine throughout their lives, such pricing can turn regular treatment into an unbearable financial burden.
Dutch Pharmacy Steps In To Help Indian Families
The Pharmaceutical Accountability Foundation (PAF), a Netherlands-based organisation that works to improve affordable access to medicines and medical technologies, has taken up the issue of supplying tiratricol to the seven Indian children.
The foundation’s efforts began after a news report about the funding effort for these children caught its attention. This brought Indian and Dutch medical experts and social organisations together.
Transvaal Pharmacy in The Hague is now preparing the medicine through compounding at a cost of just €1.80 per capsule.
This is almost 99 times cheaper than the commercial price of €180 per tablet in Germany.
Wilbert Bannenberg of PAF has criticised Egetis’s pricing policy, calling it an “unethical business model”.
For the families involved, the arrangement could provide much-needed relief from the cost of importing the medicine from Germany.
While the arrangement in the Netherlands is an important step, compounding is not being seen as a permanent solution.
Preparing customised medicines in small quantities can help patients who urgently need treatment, but it does not ensure a regular, affordable supply for the future.
PAF is therefore working with Indian paediatricians and medicine-access activists to explore ways to make tiratricol available at a lower cost in India.
The aim is to encourage affordable production and registration of the medicine in the country, so that generic versions can eventually be manufactured locally.
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