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View Full Version : Herceptin T DM-1 Responders Speak Up !!


phil
06-03-2012, 04:54 AM
Today the National Media News is full of news about a " New " drug, with promising results from" Early Testing", T DM-1. Its not new, and 5 years is not early. You Survivors know that Pres. Obamas " New " FDA rejected early approval for this breakthrough drug 2 yrs ago. You lucky recipients of T DM-1 need to call, write your media contacts, politicians ( support HR 4132 , the FAST ACT ), ltrs to editor. Speask up w/ your advcoacy grps.
This miracle her2 drug is only available to a very , very small proportion of the women, men who need it. And This FDA will take months to approve it. Should those who blocked it be in charge of approving it ?? Lets pressure both FDA and Genentech to expand access, compassionate use especially for Survivors who have " exhausted all options ". Thats one of the reasons This post-2008 FDA gave for rejecting the drug in 2010. Even then thousands of Survivors had exhuasted all options. This FDA NEVER INTERVIEWED or asked a single Survivor ! Speak Up !! If a Drug Co. thinks their product is good enough to apply for acc. approval, they should grant compassionate use, do all they can to expand access.

7andcounting
06-03-2012, 02:49 PM
Hi Phil,

Just to clarify, are you saying there is an actual bill---HR 4132, the FAST ACT--- that is in congress right now and we should be writing or calling our elected offcials and asking for their support of this bill?

Thanks for clarification!

phil
06-03-2012, 05:46 PM
Thats what my DC contacts told me , showed me the link, but i'm technologically challenged. They said it had only 20 sponsors, none from Mass. We will share more details as we get them . Its certainly worth calling your reps office about, telling them about This FDA's rejection of T DM-1 2 yrs ago, and continued slow approval process, costing lives every month t dm-1 is denied approval, ask them to back the bill Support Stage IV Rights !

7andcounting
06-03-2012, 06:01 PM
Thank you Phil, for all you are doing on behalf of women who need this drug.

Soccermom
06-03-2012, 06:11 PM
Phil, is this the Bill you were shown and are referring to?

http://www.gpo.gov/fdsys/pkg/BILLS-112hr4132ih/pdf/BILLS-112hr4132ih.pdf

Marcia

7andcounting
06-03-2012, 06:24 PM
Thanks, Marcia, this is awesome. Does anyone know when this would be voted on? Phil?

7andcounting
06-03-2012, 06:33 PM
http://www.govtrack.us/congress/bills/112/hr4132

Here is more on this bill. Unfortunately this update on this bill says it only has a 5% chance of passing.

Ladies, we know the bill number, you can Google who your elected offcials are and you can call or write to tell them you want them to pass this bill.

We want the FDA to approve life saving drugs...to fast track them so we don't die waiting for them. It is a shame to have TDM-1 out there, but have the FDA blocking us getting it.

NanaJoni
06-03-2012, 06:40 PM
Some links:

http://www.govtrack.us/congress/bills/112/hr4132 This govt. site shows the bill with only a 5% chance of passage. There is a link which shows the 20 co-sponsors on this page, too.

The bill was referred to the Energy and Commerce committee on March 5, 2012.

http://energycommerce.house.gov/about/members.shtml

I have already messaged Rep. Marsha Blackburn who is on this committee and is from my state (TN) and would recommend anyone with a rep from their state should contact that rep immediately. I am also going to contact a friend who is the Govt. Relations vice president for our college of medicine here in my hometown. He has lots of contacts in DC in the healthcare legislative offices. Will post what I find out.

dchips1
06-03-2012, 09:08 PM
www.change.org/start-online-petitions (http://www.change.org/start-online-petitions)

www.ipetitions.com/ (http://www.ipetitions.com/)

www.change.org/ (http://www.change.org/)

[/URL]

(http://www.change.org/)
here are three petitions sites to start a petition ? I do not know how they work I just know I have signed them in the past for good causes. (http://www.change.org/)


[URL="http://www.change.org/"]Darita
(http://www.change.org/)

Vicki revised
06-06-2012, 01:18 PM
Monday morning in the chemo room with the tv on. The room is full of patients and staff. Fox news promo for upcoming segment, "Good news for breast cancer...possible cure..." 4 of us receiving chemo have bc.

The media keeps sending out wrong info to attract viewers. More appropriate and accurate would have been a story about this bill I and others have never heard of but which is relevant to all cancer patients,