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

By · Via Times of India · Published by Everything Blog

In short

The effort targets Allan Herndon-Dudley Syndrome, also known as MCT8 deficiency, which inhibits thyroid hormones from reaching brain cells and triggers severe developmental issues. To circumvent Swedish firm Egetis's 180-euro per tablet price tag, Transvaal Pharmacy will compound the medicine for just 1.8 euros per capsule. Erasmus University Medical Centre originally proved tiratricol's efficacy for the syndrome in 2014, but it sold the rights without fair pricing clauses. Advocates now intend to secure domestic registration in India to enable local generic manufacturing.

Key points

  • Cross-border pharmacy compounding provides an immediate, affordable alternative to propri…: Cross-border pharmacy compounding provides an immediate, affordable alternative to proprietary drugs bearing steep commercial markups.
  • Commercial exclusivity granted to Egetis caused sharp price increases after intellectual…: Commercial exclusivity granted to Egetis caused sharp price increases after intellectual property was sold without price restrictions.
  • The Pharmaceutical Accountability Foundation is working toward local registration to esta…: The Pharmaceutical Accountability Foundation is working toward local registration to establish long-term generic production inside India.

Sources checked by our analysis pipeline: 1

The drug, tiratricol, is going to be compounded by Transvaal Pharmacy for 1.8 euro per capsule (Representative image)

NEW DELHI: Dutch and Indian physicians and civil society organisations have come together to ensure access to a rare disease drug for seven children in India, by compounding the drug in the Hague and sending it to India. Compounding is the process by which a medicine is custom-made in small quantities.The drug, tiratricol, is going to be compounded by Transvaal Pharmacy for 1.8 euro per capsule, which is 99 times cheaper than the commercial drug sold by the Swedish company Egetis in Germany for 180 euro (over Rs 19,000) per tablet.Currently, the family of one of the children is importing the medicine from Germany. It costs them Rs 3 lakh per month. Since it is prescribed for life, buying it is proving to be unsustainable.The seven children suffer from a rare disease, Allan Herndon-Dudley Syndrome (AHDS), also known as MCT8 deficiency. Due to a genetic defect, their thyroid hormones are unable to reach their brain cells effectively, leading to severe developmental issues.…

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