Thursday, September 29, 2011

Tribute to a friend

Yesterday we attended the funeral of Julie Haines who passed away last weekend after a 2 year battle with leukaemia. She was 38 and left behind her husband Paul (James' previous business partner) and two children Emily and Matthew. Her journey involved much unbearable pain in the end - which I find incredibly sad. Both James & I were upset by the news as Paul and Julie's journey was very much paralleled to ours physically and emotionally though our working connection and birth of the children. We are incredibly saddened by the loss of a mother to the children but grateful that her pain has ended.

It reminds me again that there is no fairness in cancer. It can affect anyone at any time regardless of age, sex, religion or demographics. The good old certainty in this world death & taxes!

I had other news yesterday... A drug company contacted me saying that they are unable to tell me what drugs are available to patients in the world due to regulations in South Africa. Do you know, after the call I just got so incredibly angry. I am SO sick of being messed around. The drug companies are MORE than happy to charge you astronomical fees for the drug when you are sick but provide nothing further to the larger community. (in the brain tumour context) I cannot take on a large organisation myself and that is what they rely on - I suppose. Man, there are so many more patients then drug companies we should start protesting heavily. The status quo in SA is that there ARE medications for brain tumour patients in other countries BUT we just have to happily wait for 2 - 5 years for them to be available in SA - BUT only if they are accepted by our government and medical aid companies.

I was told I am "NOT ALLOWED" to tell people what drugs are used for patients with brain tumours because I am not a doctor. How on earth am I able to run a brain tumour foundation if I can't let people know what they can look up for their treatments? Anyway, who are these people to tell me I am "Not allowed" to tell patients? What should I tell patients who talk to me - wait and die? Seriously there is something WRONG with this system and as patients we should take the power back and demand that we get fair and honest treatment. If not, lets not support their products or the doctors who don't wish the share valuable information.

2 comments:

Anonymous said...

Feeling the confining straps of laws and more laws, issued by draconian do-gooders who are only killing people, suffocating their freedom? Change the Constitution which gives these people the power to suffocate you - or lie down and suffocate; those are the choices facing South Africans. AOF

Deirdre Kohler said...

Thank you! Nice to know there are similar minds out there! I say ... we should not be scared to talk - hey we have the internet and there are more of us then of "them" !! What a challenging environment...

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