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Just had a session on the internet. Reports of bcg shortage from USA and Canada go back to April. The FDA posted an alert on the subect early May. Yet the only reports I could find from the UK are from this group starting 30 June. I think it is strange, well alarming actually ,that there have been no reports from Department of Health, NHS etc and nothing apparently in the papers. And this despite my efforts to pass this story to the media.
I wonder if NHS ,or D of H officials, read Macmillan community posts to get the latest news. If they do you might have expected some official information, advice and reassurance by now.
Thank you for putting on this link. It is the first news I have found for this Country-all other information has been for USA. My dad has had his BCG maintenance treatment stopped - he should have had it six weeks ago. He has to go for a check-up on Friday so fingers crossed all is OK. I was told by Cancer Nurse not to keep pestering the hospital (and her) for news as they did not know anything. Felt totally lost and unable to help my dad (and mum) out. At least now I can pass on the information to them.
Hi just see your Blog on the BCG shortage Im in the south east and was due for my second course of BCG in August but I have recieved a letter from the hospital to say due to the fact there is a global shortage of BCG and they are not expecting the 2 companys who supply it to start production again untill late 2013 we are all going to have to be assed for altenative treatment.
In addition to the BAUS statement a statement on BCG shortage was sent to NHS Trust C/Es (from Prof Sir Mike Richards). you can pick this up on the internet quite easily. Doesn't say anymore than BAUS. The D of H tell me that they " have been working closely with the companies concerned and the relevant regulatory authorities to ensure that everything possible is being done to secure supplies of product for UK patients. We have been in contact with companies who supply intravesical BCG elsewhere in the world, but as the shortage is global their supplies are also limited and so we continue to investigate potential alternative sources". A similar statement was been made by FDA in the USA. Apparently the BCG shortage continues in North America too.
I wonder what Sanofi Pasteur has been doing to license production of their BCG vaccine to other manufacturers. That would be the ethical thing to do.
My own short course of Mitomycin has been completed and I am now on a "suboptimal" regime of regular cystoscopies only.
All the signs are that the shortage will continue for some time to come.
yes my treatment stopped was to be for three years then every 6 months now stopped after a year risk I am told is small ha ha they will monitor with cystoscopy at three months then 6 months. I am now told there was some c infusion and they have decided now that oncotice bcd is finished after 1 year. Nothing to do witth the shortage of course. I do not believe that. I understand that what is available should go to new cases iI am ok with that its fair to give a chance, its just the dishonesty that breaks my trust
please do not stop pestering we have a right to know the situation and we are not getting the truth, honesty is the best policy or there is no trust and we have to scour the internet for information that is rightfully ours. My bcg has been stopped after 1 year when it should have been three then 6 monthly. Keep on asking and good luck
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