What can we do about it?

It is estimated that about 2000 children suffer from this disease all over the world. Several international foundations are in existence to help these children. The Cystinosis Foundation India has been launched by  Sapiens Health Foundation to form a patient group, create awareness amongst the medical fraternity specially the Nephrologist, Ophthalmologist and Pediatrician in identifying the children with the disease. The chapter is helpful to patients to procure Cysteamine, a drug which is available in Europe and USA. This drug delays kidney failure and promotes growth in these children.
The foundation has already taken active steps to manufacture the drug in India. So far 28 patients have been identified and made members of the Cystinosis chapter. New patients if they wish to register with the foundation, may download and fill-up the form (click to download form).

Information for procuring the drug

Cysteamine ( Cystagon)

Prescribed Medicine for this disease is Cystagon (50/150mg) capsules. At present the drug is imported from Europe. The approximate cost of medicine per patient per year is Rs. 4 lakhs.
This medicine is not manufactured in India and therefore patient are importing from one of the medicine distributor as under

Web site : www.orphan-europe.com

The availability and price for the drug should be obtained by sending email to the company at the following email addresses :

TO:  DPTNewMarkets@orphan-europe.com

CC: tchua@orphan-europe.com,sgirardot@orphan-europe.com,inam@ikrispharmanetwork.com

However for importing such drug one needs to get prescription from treating doctor.

For import sanction from Drug Controller,  go to their website www.cdsco.nic.in and enter SUGAM ONLINE APPLICATION section and  look for IMPORT DRUGS FOR PERSONAL USE  and  apply  through FORM 12A.

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