Dear Mr Koya, I understand  you are the Head of Urology in Auckland and I am writing to you as a patient compromised by the above. I am 59, generally very healthy and fit, never smoked, work as a Registered Nurse at CADS and have financial responsibility for a family of 4 including my husband aged 83, daughter at University and 2 year old granddaughter. I was unfortunate enough to be diagnosed with High Grade Papillary Carcinoma of the bladder and after resection I commenced BCG. After 2 treatments I was told by the BCG nurse that “we are out of BCG and everyone is only getting part of a vial.” I do understand that there is a worldwide shortage which  has been an issue for the last 2 years or so and common knowledge. I was perturbed that we have ended up in the situation were all of a sudden the stocks are severely limited. My research shows that other countries have adopted rationing some time ago to see them through the shortfall and that the
protocols were aimed at ensuring that BCG distribution was prioritised, thus reducing the risk to patients.
I am unclear as to what has been done here. Merck indicated to the media on Monday that they had filled backorders and that all patients should be receiving their treatments until early next year when another shipment was due and if there were supply issues in the new year New Zealand would be adopting the Canadian Rationing Protocol.
I anticipated receiving a full dose of BCG yesterday (my 4th induction treatment), but was told by the nurse that “everyone was getting 1/3” as Merck had not indicated when their next shipment was due and also had not confirmed the quantities they were going to deliver. She said she was acting under instructions from the Head Urologist to ration supplies.
My question is then, does that mean the Canadian Protocol is now being followed?  If that is the case I am (High Grade Ta) in the priority group for receiving treatment along with the CIS clients and should be receiving full treatment, rather than the supplies being shared out equally between clients, some of whom are low grade or have already had a number of maintenance treatments. I have no comorbidities and am a productive member of society with ongoing responsibilities. I am not compromising treatment efforts with unhealthy lifestyles, such as smoking etc. As it stands I am not receiving the appropriate dose right now.
I cannot find any research that substantiates that it is effective to administer anything less than a full dose during the induction phase, I can find some research that suggests that for people who cannot tolerate the full dose of BCG during maintenance a reduced dose does not appear to significantly affect the outcome.
I am extremely concerned about my situation and the potential adverse effects as a result of not receiving the full treatment at this time.
It is extremely stressful to have to deal with the diagnosis, but to have to deal with the uncertainty and lack of clarity regarding ongoing treatment is most distressing.
I have called the rep for Merck NZ this morning and she has confirmed that there will be a shipment to NZ from Basel in Switzerland and that she should hear back within the next 24 hours with regards to timing and quantities to be delivered.
I look forward to your response and hope you can confirm that according to protocol I will be in the priority group to receive the remainder of my treatment in full ( next Thursday 5th BCG) and the first maintenance round in 3 months.
Thank you very much, Brigitte Harre