Lets draft a letter to Washington

Merilee

Hi everyone, on another thread we started discussing what we would put in a letter to Washington that could be sent from all of us on the same day. It was a bit off topic so I am starting a thread just for that discussion.

 There are 100,000 members here and we could fill the white house lawn with mail, and really make a powerful statement, if even 1/10 of us participated.

So, here is your soap box ladies. What should go in the letter? What do we want as a group?

Frecklestoo

  

    This is exactly what I've been waiting for. Too many young mothers, wives, and men also, are dying from this disease, and it's about time we spoke up and demand a cure or at least money to those who are researching and feel they are close to a cure. We have run marathons, run Komen races, donated donated donated, but we still have no cure. They keep saying we are close, and then we hear nothing more about it. I am triple negative, and each day I'm living with fear of a recurrance, as I know many other breast cancer survivors are too. We try to lead a normal life, but we can't. We know that our life could change in a minute. Thank you for this forum. I've never posted before, but this gave me the courage to speak up. Bless all of us

Medigal

Merilee:  This is the way to go. We need what you posted about numbers.  We also need something in the letter about the horrible affect it has on the lives of people who not only suffer with the diseases but have to suffer for lack of medical insurance.  I KNOW we have articulate ladies on this site who can put the right kind of letter together so let's get to it!  Some of us don't have time to wait for others to do it.  Wherever you are lady, PLEASE give us the letter we need and we WILL flood Washington!!!  What a joy not to be alone in this miserable endeavor to wake up Washington!!  I have cried too many tears about this and now maybe we will get the help we need!

Merilee

Bump for attention

Merilee

I like the energy I am feeling for this. Please go to the other threads that you frequent and ask everyone to come here and help us with this.

FireKracker

bump

sagina

I'm in I enjoy writing, kept a journal on line during treatment and even wrote about how one's life is valued by how much insurance they carry......crazy......

Timothea on the boards from Texas has been written up by two papers here in Texas so far. She could be a leader in education - she's 28 stage four two beautiful children didn't have insurance and kept being put off since she was younger....

I think we need to tell Washington - when the entire NFL wears pink - you can call it an epidemic.

SheChirple

I am a political activist.  A letter writing campaign can be quite effective. However, you must have a clear message.  So, ladies, I will volunteer to draft a letter for all to use, if you can give me 3-5 bullet points. What is your message?

• Free mammography for all woman beginning at age 40; age 20 with family history.
• Uniform standards for testing and treatment to by followed by all insurance carriers.
• Job security for family supporters (we already have FMLA)
• demand for a cure (someone noted that, but keep in mind you can not demand a cure, that is a medical issue) demand govt research? demand govt funding for research? govt accountability for overseeing research? scholarship funding for medical research students committed to specific areas of research?

Awareness is wonderful, and I will put myself out there publicly, happy to do it, it is what I was born for.  But, we need a strong statement, several doable points.   You can't just protest and point out issuess, we need ideas for solutions.  What are yours?

Remember the million man march?  how about a million breasts?

Merilee

Awesome point Sagina

 I think the center for disease control should be all over this. If we had 240,000 new cases of unexplained flu in 2011 they would be on it!  There are 2.5 million of us living with this disease, not to mention those who have not survived. Those numbers are just shameful!

lrw333

*BUMP*

Count me in. I will do what I can to help.

FireKracker

Oh Merilee---Help has arrived....Hi Sagina----Thank you God....

Come on sistas keep spreading the word!!!!!!!

Merilee

Shechirple, Awesome! I agree with you, we need to have a clear message and ask for  things that can be done. I posted an article earlier today on another thread about a 17 year old girl winning $100,000 in a science contest for finding a way to deliver chemo to cancer cells without damaging other cells. Now if a 17 year old girl can find that, why can't the scientific community????!

Personally I want more prevention dollars, and I want the poisons in our environment and food addressed now! I want everyone with a life threatening disease to be able to get care, and I want women to be able to take time off work (paid) when they have this diagnosis, and are in treatment and after care. I want funding to be available for the center for disease control to get on it!

sagina

How about disability availability for cancer patients in active treatment? I was fortunate enough to have a job that paid me to work from home when I could - I did not apply for my short term disability though AFLAC but others on the boards stated only stage 4 are automatically given disability.  Does anyone know the answer to that?

It seems it would help in the healing process and the paying bills process if a cancer patient could have the option to take FMLA with an automatic government disability if necessary.  Small business under 50 aren't required to participate in FMLA either...so perhaps gov disability would be some peoples only option?

Not sure I conveyed that thought correctly....

sagina

My journal has the line, "how many breaths we take is measured by insurance or wealth."

painterly

Well, I was wondering when you ladies would come up with an idea like this. The USA is a huge country with many women who could be heard and they have a loud voice...given the opportunity.

Shechirple is right....the message has to be very clear.

• My biggest beef is the power the insurance companies have over treatment options!! Prognosis is dependent upon what insurance companies are willing to pay for treatment.  

• Government accountability for overseeing research.

Merilee

Signa-Yes to what you just said.

I got disability (SSDI) but only after having 2 recurrences, and documented damage from chemo, and a diagnosis of PTSD

Merilee

I also like the idea of a million breast march, or in our case It may be "breastless march"

Fearless_One

I would like to see several things:

1) Affordable health care, perhaps a sliding fee scale for those making less than the median income for their city

2) Stage IV should get automatic SSDI approval - even if they are working at the time.   Not working for 6 months is enough to render many people homeless, when no income is coming in.

3) Re-instate Cobra assistance for 2012.

Merilee

Yes!

Merilee

Ladies, this thread has been up for only 3  hours and we have all ready had 92 views. We can do this!

Fearless_One

I hope see.   I never thought I would see in my adult life a time where some families have to choose between paying the mortgage and trying to hold onto health insurance for their families.

Medigal

Ladies:  I am unclear about what our real message is supposed to be and I think if we send Washington thousands of letters with all these different concerns, none will be considered.  I thought we were going to direct their attention to the desperate need for healthcare insurance for those with chronic or pre-existing medical problems.  We can't resolve ALL our problems at this time not with the bozos we have in Washington. 

People listen to me.  I just spoke to my DD and she put it all in perspective for me.  She has a chronic disease and said "What good is a Cure, if you don't have healthcare insurance and can go to the doctor who can save your life"  An example.  There is a beautiful young lady who in 2007 was told she was on the verge of going blind due to her diabetic eye problems but the eye specialist knew of a special laser treatment for her eyes which meant she would have to go back and forth for years for expensive treatments to save her vision.  Today is 2011 and although his treatment meant she had to give up a lot of her night vision to be able to see in the day, she has NOT gone blind!  She is still having laser treatments using her COBRA from her former job.  Do you get my point and hers?  What good is a cure if you can't afford it because you don't have insurance?  

Would many of us still be alive if we didn't have the insurance to help pay for the expensive operations, chemo, and radiation treatments we had to have when diagnosed or the expensive ALS we had to take?  Insurance, insurance, insurance!  I think we should focus on getting Washington to come up with a form of medical insurance for ALL people who need it and not put waiting periods on it like that insanity of their PCIP!  I would not be alive today if I had not had the insurance all these years to have the operations which saved my life.  We need to focus on ONE thing, imo and IF we win this battle, we can take on others.  We need a Medicare type affordable insurance for people younger than 65.   I think most Americans would be glad to pay a bit more in taxes to have the assurance of medical coverage.

  We need to focus and decide what is the most important issue to us and then join together and flood Washington with our letters.  Now is the time for others to share their opinions so we can come up with what we want  from our government.  I do hope we do not let this desire burn itself out.

Panmars

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cycle-path

On this same subject, the LA Times had an excellent editorial yesterday: http://www.latimes.com/news/opinion/commentary/la-oe-ward-in-praise-of-obamacare-20111206,0,6794828.story

FireKracker

Can you imagine a MILLION BREAST MARCH????????

Damn... if we want to make a statement what better way to do it.

We still have to get the word out....one sista telling another...like a chain letter.

come on WE CAN DO IT!!!!!!!!!!!!!!!!!!

Medigal

cycle-path:  Thanks for that article.  That dear lady made my point.  I hope we will decide that "insurance" should be the key point of our letters.

Merilee

Medigal- I think we have a consensus that medical care and coverage should be included.

 In addition there are other issues that need to be addressed simultaneously and our first shot here is going to be our most significant.  We need to make the most of it. We need to stop this disease in its tracks and we need to let Washington know that we are a huge force to be reckoned with and we will not set down and shut up.

cp418

I love this idea!!  Also, I might suggest specifying a mail date so we all bombard that their mail room with thousands of letters to be noticed by volume - -  and although I am not fond of pink --- I suggest the pink breast cancer symbol on the envelop as well.  Okay - maybe I'm being tacky....

Merilee

CP- I agree, all mailed on the same day and something to show unity on the envelopes as we know they will not read 10,000+ letters. We only need them to read a few to see what is up and then they will know that all the letters are from one group. I am also going to suggest that we include that we are all members of Breastcancer.org. which will also bring traffic to the site, and help other women find their way here. For me this site has been a life saver.

spendygirl

I think the pink will get their attention.  I'm not much of an activist, but I sure can mail a letter!  Thank you ladies!

FireKracker

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