Cystinosis is a rare disease that causes cystine, an amino acid, to build up in the body’s organs. However, there is treatment that can prevent this accumulation. Normally, patients take medication to prevent the buildup in their body in addition to eye drops to specifically stop the buildup in their eyes. If the eyes accumulate too much cystine, patients can become blind.
Approximately 100 Canadians have cystinosis and 1 in every 12 Canadians has some sort of rare diagnosis.
A New Problem
Health Canada has recently approved a new formulation of eye drops (Cystadrops) which costs 103,272 dollars each year. This new formulation means patients will only have to use the drops a maximum of four times a day which could improve their quality of life. As this is now regarded as the official version, pharmacies are no longer supposed to create their own eye drops. However, these drops made in-house cost only a few thousand dollars. The price difference is far too much for the vast majority of patients and families to even fathom.
What’s truly shocking is that this has happened twice in just a two-year period for cystinosis. Some pharma company has tweaked a version of their medication and began selling it at an exorbitant price point. This new version made the old, cheaper versions either difficult to obtain or completely impossible for patients. It makes no logical sense. We would think that the approval of a new medication would always benefit patients. What is the reason for this discrepancy?
Olivia Little is one of the children affected by this change. Her family can’t afford the new version of the drops and they are at a loss for what to do. Already, her pharmacy has stopped making the drops she had been consistently using.
The Canadian Agency for Drugs and Technologies in Health has announced that they believe the Cystadrops should be covered for patients. However, this coverage is contingent on a price reduction of at least 80% by the company who created them. The company, called Recordati Rare Diseases Inc., declined to comment on why they chose the price they did. But currently the organization is in conversation with the pan-Canadian Pharmaceutical Alliance (pCPA) to discuss the price tag.
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