cancer research

I spent a couple of hours yesterday with my friends family whos lives were turned upside down June 17th when they learned their 13 year old daughter had Leukemia. I was asking lots of questions about the meds she is on and why and they were sharing with me some of the costs they are enduring right now. For instance one of the meds they had to buy for her was like $178 for their 20%....they do have extended benefits that pay 80%...so their portion was over $170! for 1 type of med....yikes that is brutal! can't imagine those costs without the extended medical benefits! so we started talking about all the money that goes into cancer research every day, I am actually going to do some research on it, but I am guessing it is a multi-billion dollar industry.

I would like to know out of that $$ that we all give, what is the breakdown? is any alloted to families who are going thru the living hell of cancer? and if not...why not?! my staff at work decided to donate all our tips...which is not much usually....to their family....customers have given more and I know quite a few staff have been beefing it up as well....in a little over a week we had $265 to give them. I was pretty proud of my staff and it was a huge blessing to them as they need to buy a new vacuum system that kicks up less dust and cleans better. They also have to buy a new water filtration system because Geli can't drink tap water anymore. The list I am sure is quite endless.

So how do families that are hit with this random anyones game disease? I guess it is like any disease, certainly if it wasn't for my families support Jay and I would have lost everything when he was diagnosed with CIDP 3 1/2 years ago. He couldn't work. We looked into what was out there for us and it all boiled down to the fact that we owned a vehicle that was worth more than $5,000.00 therefore we didn't qualify for any aid....the fact that we owned a house was not even a factor but if you own a vehicle over $5 g's clear and free...then you get nothing. I found that brutal. .... just FYI Jay's blood treatments he has done 2 days a month in the hospital cost $5,000 per day..thats about $1,000 per bottle which takes 1,000 donors to create 1 bottle....so just another little push for people to donate blood! oh and our BC medica covers 100% of the hospital treatment but they don't cover the steriods he is on but again thankfully we have extended medical benefits thru my work...otherwise that is about $200/month.

We have an adult friend who has liver cancer and regular traditional chemo has failed him so now he is on Dr approved experimental treatments....NOT covered by our BC health care. He forks out $2,000 month in chemo meds alone. Where is all the $$$ raised for cancer research in this case? here he is a man about 50 years old, trying to work, employing others to work and since the approved traditional chemo is not working and he has to try an alternative to keep him alive he has to pay for it?! something ain't right.

My Aunt was diagnosed with a very deadly aggressive type of Leukemia about 6 years ago, was given 6 months to live and yah well she beat the odds....they were NOT going to do a bone marrow transplant on her for no other reason than she is over 60 years old....I don't know all the reasoning or statistics on this but when you are that family that reason really isn't good enough. They did do a mini stem cell transplant with my Uncle's blood and we all believe that is the reason she is alive and kicking...and if you know my Auntie that is true in every sense :) Love you Auntie!! :)

Please know that I am NOT saying that there is not a need for cancer research in any way shape or form.... I am saying that I would like a breakdown of where that money goes...how much in advertising? how many people does it employ?...to me it's no different than asking any relief world aid organization to breakdown how the donations they receive are spent. Do they make that information public? Is there an organization that keeps them accountable like the gov't keeps everyone else accountable...except for themselves but that's a WHOLE other soapbox!

Does anyone have information on this ? Like I said I am going to do a little research myself and see what I can find.

2 comments:

rena said...

I think you will find that cancer research money goes to research and not to treatments. When mom was sick, I did alot of research and for example, the chemo drugs that she was on virtually all come from plants or derivatives of plants either in the ocean or the jungle. Just imagine the amount of manpower, lab work, testing, and formulating to first of all discover the plant, then make it into a drug. The initial discovery of some species was over 20 - 30 years ago and it took this long to get the drug to work. These are simplyfied terms but you get the picture. The expense of the drug itself depends on available supply and patents. I'm not so sure that the problem lays in where the research money goes. Rather it lays in the pharmacuetical companies who lobby governments to give them patent protection on the drugs once they are discovered and developed. Remove patent protection and you will have more manufacturers, more supply, more competition, which will naturally result in more competitive pricing. Patent protection is the reason the drugs are expensive, not expensive or wasteful research grants.

Shash said...

Rena's right, I've heard of the wars that go on because of patent protection. It taking decades to approve drugs etc.

I do wonder though... the CEO of Sick Kids Foundation in Toronto, his paycheque last year it was $600,000 and the year before that it was $2 million.

The majority of the money given to those organizations who foster children overseas in impoverish nations goes to administration costs.

So there is a distribution of funds that could go elsewhere, I like your idea about helping those families who have to live through it in the here and now.

The kids and I are going to help raise some funds for them too!