Monday, September 5, 2011

Back in the saddle

I cannot express enough how busy life has been over the last 3 weeks. The conference was a great success and I would like to give Denis Strangman (International Brain Tumour Alliance - www.theibta.org) a big thank you for all of his support and advice which has been an invaluable assist to us. The reason I say it was a success is that we networked, got a good idea of what is happening out there and of course got to expose the needs of patients with brain tumours in South Africa.

SO... what can I share that I feel would be relevant? The list is endless, but I am in the mood to be a little  controversial - I would like to mention medical ethical policies. As we know, the medical institutions are inundated with medical needs of patients and they can't keep up, particularly due to the high incidence of HIV / AIDS. So they would like to come up with a 'fairness' model of how to address treatment and management of patients. The issue is that this would mean 'grading' cases in order of importance or chance of survival. Understandably when a very old person gets ill they don't receive as much attention as a child who is 12 years old based on survival. BUT it also means that brain tumour patients, who typically having a lower chance of survival, will be listed as a 'lesser' cancer to other 'common' cancers like breast cancer who have  a better prognosis.

So, should this type of grading be enforced, I would probably not have been treated and be dead today. Ok so I am exaggerating my case, but I do wonder if it affects other people in society who can't afford medical aid like I could. The other issue with the medical body who is coming up with this 'fairness philosophy' towards medical treatment, is that I don't see any patient advocacy groups being invited to these discussions to represent the needs of people. The team as far as I know are professors. This is essentially going to create an environment where doctors will have to follow policy before their medical oath "...Into whatever patient setting I enter, I will go for the benefit of the sick and will abstain from every voluntary act of mischief or corruption and further from the seduction of any patient..." Hippocrates

So, I feel that we as the valued "customers" of drug companies, doctors and medical technology should start demanding that we also have a voice in our treatments. Just a reminder that we as patients need to learn a bit of responsibility too...we know when there is something wrong with our bodies and therefore patients need to 'grow' up and say what they need in an honest, safe and realistic environment.

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