Lets draft a letter to Washington
Comments
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Merilee and Ladies: I have been spending my time today researching ALL the organizations already established trying to find a "Cure for Cancer" with very wealthy people and a lot from the entertainment field. However, I went on the NBCC webpage and was taken aback by the work already done by NBCC for a 2020 Cure. If this is mainly about a "Cure" would not our time and actions be better joining in with a very large group already focusing on this campaign which has gotten much national representation? What do we hope to do that they have not already done??
This is the reason I was focused on the "Healthcare for All" issue. Seems like we already have a group working very hard on the Cure issue. I had no idea NBCC was doing this. It is going to take more money for research to bring about a Cure and our country is deeply in debt. However, if you google "Cure" you will come up with a slew of foundations and wealthy people already trying to get this done. Washington, imo, cannot and will not provide the money needed to cure cancer or any other disease. If you want a cure, you need to get out there and get the money yourself for it. I did it for many years for diabetes and it's 2011 and there is still no cure! So, I think NBCC should be the place to go for people focusing only on a "Cure". They are already established and have had the media attention. Just my opinion.
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hillck: I think my supper porkchops must be messing up my brain because your email confuses me.
You seem to be gung-ho on fighting for a "Cure" but how do you think the cure comes about. It's all the money given to researchers to go as far as possible. Maybe I did not read enough on NBCC but I thought if they wanted a cure by 2020 they have to know it comes through enough funds to do the research. It seems to be you and NBCC have the same goals. So why don't "we" focus on something else besides just the "cure" with our letters?
As for 2014 and the pre-existing condition, if the GOP finds a way to abolish Obama's Affordable Healthcare Act, my concern is we will never see that enacted. I have written and asked the GOP over and over again WHAT are they going to replace Obama's Healthcare Act with if they abolish it and they NEVER reply! If they have anything, they sure are keeping it a big secret! This is why I wanted to let them know we are watching what they are "not" doing and doing by asking for the Affordable Healthcare Insurance for "all" especially with pre-existing diseases.
I repeat "What good is a CURE if you don't have medical insurance to pay for what you need to be cured"? I stand on this, I will make this the core of my letter, and I just hope many others will too. Washington has been inundated with groups asking for "Cures" for tons of diseases. Do you see all these diseases being cured? For years I spent my life right in the middle of it all so I know the inner workings and what happens when we try to get Washington to "cure" some disease. I got out of it after years of exhausting work and seeing how useless my efforts were. The group I was President of is still working for the Cure for Diabetes. They also hoped to have a cure by a certain date. I started with it in 1980. That was 31 years ago. Hope you have a lot of patience!
So I am sorry we disagree with what we want out of this campaign but I will still send my emails to Washington on 1/23/12 no matter what the main goal of the campaign turns out to be. I do hope Merilee comes up with exactly "what" is in her sample letter or template so more of us can decide if we want to use it or just do our own.
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medigal...if you would just STOP for a minute! You are turning me (and I would guess MANY) away from this whole effort! You are on this thread for 1 reason, and 1 reason only...your daughter's plight, which is no doubt of importance to you. I understand your impatience as a mother trying to help her daughter...but are your efforts in the "right" place? This is a BREAST CANCER support site!!! I am on board with what Merilee is trying to accomplish, but your insistence and obstinance really makes me stand back...Merilee would have much better luck with what she is trying to accomplish if you would QUIT HY-JACKING her thread, for what you would like to accomplish for your OWN (single) gain! You should STOP the arguing on THIS thread and just start your OWN with YOUR intentions!
Merilee, I do support what YOU are trying to accomplish!!!
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Flwarrior: Have you forgotten "I" am also a bc survivor. I just brought my DD's plight into this due to my concern of where we were heading with this "Cure" issue. How in the world can I have a single gain with this? It was supposed to be a group effort. Other posters gave their opinions and you do not seem to consider that "arguing", just me. What "intention" could I possibly have that you think I do? Please don't reply. I do not need to hear any further from you. I WILL send in my emails on 1/23/12 but not as a part of BCO. I will continue with my efforts alone. I have deleted all my posts so you will endure no further upset by them.
Merilee, I, too, support what you are trying to accomplish and I am sorry it won't be with my help. Best of luck to you on your campaign! I apologize if I overstayed my welcome.
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I'm with Hillck on this. I thought this was about health care reform and access to affordable insurance? Unless Obama is re-elected, I feel that by 2014, the pre-existing bill will have been turned over - and yes, it surely can.
Lump/chemo/rads/hysterecomy/oop/mastectomy/implants
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Just my thoughts. I still like the 3 things gardengumby pointed out. I think if a letter was drafted with those 3 points and sent out on 1-23-12. But of course would be in on any campaign, but my heart feels so badly for All Americans dealing with this system blocking healthcare, meds and follow up care. My computers crashed so many times this week I have a hard time following. But yes I will sign a petition so hopefully we have a united letter with many signatures.............Kiley ................please stay medigal....................................................................................................
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There seems to be 2 very different issues going on here.
1.) Merilee ( correct me if I am wrong...) Is interested in the 250, 000 women being diagnosed with bc each year...2.5 million of US living with the bc dx...research...research...research...but where are the answers? and cures? She wants to know where have all the $$$ for research gone...why aren't there more answers??? maybe a cure??? She wants pressure for more education of the causes and more answers of how to stops this dreadful dx!
2.) Medigal (correct me if I a wrong...) Is interested in insurance, or affordable medical care for ALL. So that when we/anyone is diagnosed with the "dreaded" we can at least afford to get the medical care that we deserve.
These are BOTH very worthy things for us ALL to fight for! They are however, very different issues. So, why not 2 campaigns? I would certainly support both. I do believe that there has to be "A" "single" "one" focus in each campaign. If it needs to be 2 different letters each with its own focus, then that is fine. Imagine Capitol Hill with a flood of letters one week and then another flood of letters the next week!!! There are a lot of us here and floating in this boat together there is no reason we couldn't all support each agenda. If the issue continues to be a debate of what the AGENDA "should" be...no one wins!
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I agree wit you FL warrior. No real reason it has to be one issue over the next. The main idea here is to flood Washington with letters explaining our concerns. This is why I have continued to say, in addition to using a template (or not) we need to write our personal stories and the challenges we have faced. So what if we end up writing about 3-4 issues, for heavens sake these issue are all very real and all very valid. When a delivery of thousands of letters are delivered to the white house, this is going to get the public's attention as well. We need to stop taking breast cancer lightly as a society. Only someone who has heard Cancer and their name in the same sentence can really understand the impact and the challenges that come with. My understanding of the issues are as follows:
We want a cure ( the 17 year old girl from California has done more than our overpaid researchers), we want more prevention dollars ( no one wants to get this in the first place), we want equal access to care ( we are trying to direct where our tax dollars go, instead of some of the stupid things like a probe to Mars), and we want the companies who have poisoned our environment, homes, and food to be made accountable and stopped ( EPA and CDC should be all over this epidemic!).
We all have such passion about the issues that have impacted us the most. Lets get that passion on paper and dump it on the white House lawn! We need to let the world know that we are not going to continue to accept things as they are. We are enough people to make an impact if we stay the course. We have a variety of issue but we have a common goal.
Snuff out this hidious disease by a multi faceted approach and give proper help to the victoms of it.
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Well said Marilee.... IMO!!!!
Cindy -
Just an observation from a Canadian bystander (supporter) - are you going to send the mail to the White House OR Congress.
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White house-my letter will be addressed to the President and his wife
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This may be a moot point by now as everyone's been narrowing down topics, but I did notice someone early on say one request should be for 'standardized' and accepted treatments. That could be a situation of watching what you wish for.
A supposedly highly qualified panel decided a while back that standard screening should mean NO mammograms for women under 50 and not even clinical breast exams/self exams - is that what we want? Personally, I want my doctor to have full freedom to do what he/she feels is in my best interest as a patient based on his/her experience, knowledge, and yes, gut instinct (that does assume that he/she is staying up on the latest). I think one of the problems we have nowadays is that doctors are hemmed in on all sides - the insurance companies that make them prove something is necessary and penalize them for stepping out of line, malpractice fears that force them to do things they know problably aren't needed just as CYA because someone could bring in an expert witness to say such-and-such is 'standard procedure,' and federal regs that may or may not be medically based. Standards are important, but when they become accepted by federal agencies, they take on the power of law - and no doctor, no matter how much they believe a patient is one of the exceptions (and there always are, like all of us women under 50 who have breast cancer), is going to fight that.
Just food for thought. (Full disclosure - my Dad is a retired ob/gyn, so I do have a lot of strong opinions from experience, but I also see this as what I want now as a BC survivor). Personally I think focusing on the research angle is huge.
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I am bowing out here.....it seems to have lost focus. I thought this began as an issue about accessable and affordable insurance for all, even those with pre-existing. Obviously, until there is a cure, we need to be able to be treated.
Now we are getting into EPA, CDC and more "preventable" funds? Billions of dollars a year are spent on research. I thought this was about health care reform.
I will draft a letter and send it on my own...... seems we all have a different focus that we would like to address ......I hope one day it all gets addressed :-)
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Fearless- I think we all have our various passions here. As long as there is a letter to Washington on January 23rd, I will thank you for helping from the bottom of my heart.This is a bring attention to the issues surrounding Breast cancer campaign. The issue you have selected is more than valid and I salute you.
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Merilee, you are the one to be saluted, as you started it...it is passion like yours that creates change :-)
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Hats off to you Merilee----I will draft that letter and I will identify myself as a member of BCO.
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Good morning!
If you are viewing this for the first time, thank you for checking it out. And a big thank you to the ladies who have mentioned this on other threads. Over night our views went over 1400. Great job spreading the word ladies.
Jan 23 is the day we want to do a mass mailing to DC. Currently we are waiting for the Mods to decide how they might help us.
I have asked for a side bullet to announce it, and they are deciding and should have a answer for us today.
Check back and see later.
Again, thank you to anyone willing to send a letter on the 23rd of January. We want to let Washington know that we are a huge group of strong women who want this ugly disease, and the hardships that come with, addressed with the urgency that other epidemics have received.
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Look, I'm a letter-senderer. I have written numerous letters in my life, usually to something local that I believe needs addressed.
I will join your letter writing campaign. After the holidays, please give us clear information as to what we should write. (Too hectic now during Christmas time).
I think we should do this. What have we got to lose? We can learn thru the letter-writing process about what works and what doesn't, what's effective and what isn't.
As a member of BCO for almost a year now, and seeing the vast amount of women affected by this disease, my thoughts are often "bc is an effing epidemic!
It simply boggles my mind that more is not being done for a cure! for prevention! for standardized care!
bc is an effing epidemic!
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TheDivine Mrs M
You are so right! Here are the latest stats from the American Cancer Society
240,000 new cases in 2011
2.5 million of us in the US with this diagnosis
Creepy right?
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And my I say that epidemic may not even be the word: pandemic may be what it is. I will have to look up the meaning of both words and see.
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Because, I mean, a couple years ago people were freaking out about the stinkin' bird flu! That it was gonna be a pandemic (never happened). And then there was the H1N1 (swine flu) pandemic that wa supposed to happen which never did. Here we are hundreds of thousands of women dx with bc!
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Exactly the point I want to make!
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I'd suggest flooding your congressmen's office with the letters, too. It won't help one bit if the President buys into it but congress digs in their heels. We know how that's been going lately.
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Good point enjoyous
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http://ratical.org/radiation/CNR/PBC/table1F.html
This information may be of interest although it is dated. See footnote #3.
Table 1
Estimated Breast-Cancer Mortalities, Incidence, and I/M Ratios, U.S.A *Breast Cancer Breast Cancer I / M
Year Mortality Incidence Values
1960 23,755 NA NA
1965 NA 62,000 NA
1967 26,900 64,000 2.379
1968 28,350 65,000 2.293
1970 30,100 68,000 2.259
1971 30,500 69,000 2.262
1972 32,000 70,000 2.188
1973 32,400 73,000 2.253
1974 32,500 89,000 2.738
1975 32,600 88,000 2.699
1977 33,700 89,000 2.641
1978 33,800 90,000 2.663
1979 34,200 106,000 3.099
1980 35,500 108,000 3.042
1981 36,800 110,000 2.989
1982 37,000 112,000 3.027
1983 37,200 114,000 3.065
1984 37,300 115,000 3.083
1985 38,400 119,000 3.099
1986 39,900 123,000 3.083
1987 41,000 130,000 3.171
1988 42,000 135,000 3.214
1989 43,000 142,000 3.302
1990 44,000 150,000 3.409
1991 44,500 175,000 3.933
1992 46,000 180,000 3.913
1993 46,000 182,000 3.957
1994 46,000 182,000 3.957
1995 46,000 182,000 3.957
1996 44,300 184,300 4.160(1) Breast-cancer incidence rises from 68,000 to 184,300 between 1970 and 1996. Factor of Rise = 184,300 / 68,000 = 2.71. Rise = 171 %.
(2) Female Population Rise from 1970 to 1995 = 134,461 / 104,309 = 1.29. Rise = 29 %. (Table 2)
(3) There is no way that female population increase alone can account for the enormous rise in breast-cancer incidence.
(4) During the same period (1970-1996), the number of breast-cancer deaths rose to 44,300 from 30,100. Factor of Rise = 1.47. Rise = 47%.
(5) Meanwhile, the fraction of all U.S. women over age 60 keeps increasing (longer lifespan), which means more women are in the ages of high breast-cancer mortality. Thus the raw number of breast-cancer deaths per 100,000 women (all ages combined) has risen, while the AGE-ADJUSTED number of breast-cancer deaths per 100,000 females has remained almost constant.
* Source: American Cancer Society, annual January-February issues of CA - A Cancer Journal for Clinicians. Exception: The 1960 figure came from ACS 1994, p.5.
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Scary is an understatement
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OMG---Speachless!!!!!
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Finally found it Granny..............I am about to make a very bold statement which many may find out of line.........or even heartless.................
After hearing last week that they have almost come to the point of being able to control and possibly stop HIV, it made me sick to my stomach.........................Women in just the U.S. everyday are dying of breast cancer...................Is there one politician in my town, any of your towns, or for that matter in this country who gives a "shit" about women with breast cancer............................No.......................Problem is there is too much talk about "how many women survive", and not enough talk about how many are "STILL DYING", DO YOU HEAR ME , STILL DYING " of this dreadful disease, and the ones who are surviving for a few years, are going through "HELL" with the medications, and the treatments they have to go through, just to get those few years.............................DON'T GET ME ON THE SOAP BOX, YOU WILL NEVER GET ME OFF..................WE AS MOTHERS, GRANDMOTHERS, SISTERS, AUNTS, DAUGHTERS, NIECES, AND BEST FRIENDS AND WE...................DESERVE BETTER.....................WE ARE THE BACKBONE OF THIS NATION, AND THE GLUE THAT HOLDS FAMILIES TOGETHER...............................WE HAVE EARNED OUR RIGHT TO THE BEST THERE IS........
FIND A DAMN CURE, AND CONCENTRATE LESS ON THE TREATMENT...............NOW I'M GOING TO FIND THE VODKA.......................
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Duckyb1, you are right on. I lost a good friend last summer to this disease. Some asked me why did she die from it, and I had to educate them on the fact that when we go through chemo and radiation, it's not a guarantee that we won't get it back. There is no "cure" and by now there should at least be someone somewhere that has found a breakthrough treatment, and only needs the funding to get it out there. We need it now. Duckyb1, your post would be a perfect letter to send in January to the Whitehouse. It's a strong statement, and will get some attention especially if we all send a similar letter. I for one, don't want to sit back and wait for more and more women to die of this disease, I want a cure now, and I don't understand why we can't make that happen. It's out there, and we need to push to get it going. Enjoy that vodka.....
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Thank You duckyb1, nicely put ........Have a vodka for me ! kiley
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