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Old 10-27-2014, 02:21 PM   #18
'lizbeth
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Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
Re: A Place to Vent about "Awareness"

Amy, thanks for addressing this important issue. I feel the greed in fundraising, cancer research, and oncology holds back progress on finding cures for those who desperately are in need of one.

Some of us had a similar conversation each October. Last year I was venting about the stink of pink. I clearly remember NEDenise participating.

We discussed Charity Navigator as a good place to check out before giving. I just visited and found that one needs to register to use it.

The Breast Cancer Research Foundation has 4 stars. Susan G. Komen has 3 stars.

I read the article about Susan G. Komen and I can see many valid points about how little of the donations go to research. I made the point last year that all this money going to awareness skipped me. I procrastinated at the age of 40 thinking that I likely could wait for a mammo. Wrong! Had I gone for mammos at a minimum of every 2 years it would have been found much earlier.

If research is our priority then another charity would be better. Perhaps the Breast Cancer Research Foundation?

From my personal experience the huge amount of funds going to charities for research is just the beginning of the problem. The entire system is broken.

Once a drug makes it into clinical trials the system breaks again. Poor and slow enrollment has been a chronic problem. Phase I and II trials are in limited locations. The trials compete against unaffiliated oncologists for patients who rarely find out they could participate until after receiving standard of care. Newly diagnosed patients are reluctant to participate wanting to go with the 'tried and true" treatments. This extends the time for new treatments for years, even decades.

To speed up cures we also need a campaign about enrolling in clinical trials, not just getting mammograms and breast exams. Patients need support with transportation costs and lodging.

So many opportunities for improvement.
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