Guest blog: The High Cost of Orphan Drugs

In Market Access by Freya Smale

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“Newsflash – orphan drugs are expensive. Juxtapid (lomitapide) for treating homozygous familial hypercholesterolemia costs $250,000 a year. Gattex (teduglitide) for short bowel syndrome costs $295,000 per year. Naglazyme (galsulfase) for mucopolysaccharidosis VI costs $441,000 per year. The question is – who is paying for those drugs?  According to an editorial in the new issue of Expert Opinion Orphan Drugs, insurance companies are paying for it but they are increasingly asking the patient to foot more of the bill with a trend towards co-insurance rather than co-payment plans. And this trend may continue if the price of orphan drugs also continues to rise.” – See more at:

We are very pleased to welcome Rare Disease Report as a Media Partner to the World Orphan Drug Congress Europe- see a full list of partners here >

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