Hi I am very new to this group and wonder if you may be able to help me. My cystinuria has been alife long battle, too many surgeries to mention. For the past 40 years though I have had the use of Tiopronin(thiola). This significant reduced my stone formation. sadly the drug company and the Aystralian Government have failed to reach an agreement so supply has been terminated in Australia. I have already in 6 months since stopping Tiopronin produced numerous stones, had one surgery and now scheduling another. The Health minister understands my plight but is powerless he says, he has however given me permission to source it overseas and bring it in for my own personal use. But alas the US is uber expensive. Is it available in the UK? i wonder if with a prescription I might be able to get it. Any suggestions appreciated.
Tiopronin Supply: Hi I am very new to... - Cystinuria Support
Tiopronin Supply
Hi. Welcome to this group. Sorry to hear your story. It is so frustrating that we have an effective treatment and then often it is not available due to funding or supply issues.
I suspect the background to the decision in Australia is the huge price increases that have occurred around the world with ‘price gouging’ - in the UK the price has gone up 1000% for the same drug. So I doubt you will find it cheaper in the UK. I don’t know if other countries might have local generic versions?
We do also need to keep petitioning governments worldwide to support patients with rare diseases like this for equal access to medication.
Finally it would be worth asking your doctor about whether an alternative such as penicillamine would be suitable.
Hope that is helpful.
