I don't really feel like writing, but that is usually a good sign that I should. I have always wanted to keep a journal but then I just stop writing. I am trying really hard not to let that happen with my blog. I enjoy doing this but at times it seem a bit like a job. So I am going to write and about something very interesting that I listened to yesterday.
On a pod cast on CBC, from a show that was done about two weeks ago, they discussed where exactly our dollars go when we donate to cancer. It was very educational although I was aware of some points. The most important point that was made is the cancers that get funded the most are not always the ones that are the worst. I knew this to a certain degree b/c when I was diagnosed with Ovarian Cancer, I realized that there was not alot of information or awareness about this type of cancer with women and with family physicians. It not only surprised me, but terrified me. Why? Because over 60% of those diagnosed will die from this disease in 12 months, after five years there are virtually no survivors. If people aren't even aware of how terrible and deadly this cancer is how can I possibly hope to survive it. Of all the women's cancer Ovarian is the deadliest but, I am sure you guessed it, breast cancer is the most widely known and more common, and also the most to receive donations. The question is 'do you know why?'.....because of the fact that there are more survivors!!!!!!!!! Any cancer that has a lot of survivors (Prostate for men) is going to have the largest group of people speaking up for it and therefore making more noise in the public forum to get more money. Don't get me wrong, I am not against breast cancer, well I might be just a little jealous, I keep saying that if I ever get breast cancer, I am going to claim that it MUST be metastized Ovarian cancer!
So we have very deadly cancers (there are over 200 diff kinds of cancer, each being essentially its own disease) which get virtually no funding from the public, less from government and of course even less from pharmacutical companies. The public b/c we don't hear about them, the government b/c there are less peole living long enough to lobby them, and well we all know why not the pharmacutical company b/c it is in the business of making money and well there isn't money to be made when people are dying!!!
So, now that we know why, what can we do about it? I will tell you what I did.... Well, when I was diagnosed, I started a support group for those diagnosed with it in order to bring people together. It was successful but I must say within 2 years 29 women had died. I also helped to organize fund raisers, one being a run that still occurs each May to this date. One of the interesting things that happened was I found out that people are very territorial about their cancer. When we approached CIBC to help us with the run (b/c they do the Run for the Cure) we found out they didn't want to help us b/c it might take away from their run......hmmmmm. When we approached the Cancer Society we found out that 30% of the funds would be applied to a building fund before going anywhere else. So, instead we started our own trust with LHSC so that all the funds would go to research, something that was not really going on too much.....because we all kept dying!!!! For us, that was what was absolutely essential.....we needed to start surviving so that we could raise more money and awareness.
The very first year we did the run, many tried to make us be realistic and kept saying..."the little you will bring in won't really do much for research you know, maybe you should rethink how to disperse it"......well they all got to eat crow when we raised over 100,000 dollars that very first run. To date I can't tell you the amount that has been raised (over 1/2 million dollars or so), but I can tell you that there is now a Chair for Research at LHSC and a doctor on staff who just researches Ovarian cancer. In just the past 14 years those researching Ovarian Cancer in Canada have gone from about 6 people to over 70 people. One of the other things we did during the past 10 years is to bring awareness not only to the women (some of whom I am sure didn't even know that they had ovaries, they thought a hysterectomy took them out) but also to all the GP's in the London area. We sent packages of info, we had cards made up, we did talks and showed videos, we went to Churches etc.
So that is what can be done for those cancers that kill so many that they fall off the radar. But you have to know your stuff, research the charity, figure out what the money is going to.
If you want to donate to a charity there is a web site called 'charity intelligence' which gives you an idea where the most dollars go and how they are spent. It is very important to do research so that your dollars (which you have worked hard for) go to a place that 'you' believe they will have the greatest effect'. I am not advocating not donating to any one type of cancer, I just think that perhaps we need to be figuring out where our dollars are most needed. Right now, the most dollars are going to those cancers that at this point in time have the lowest mortality rate, and the least are going to those that are killing the most people. We can't depend on government, and certainly not pharmacutical companies to take the first step, so maybe we 'the public' can do something about this.
Well, I feel that I have vented enough. If you are interested in listening to the podcast on CBC....you can find it at CBC.ca, Sunday Edition, November 20, 2011, in the second hour.
So, now I will go and knit and figure out what I will write about next time....I will try to keep it a little lighter....:))