Pushing this up from TDM1 thread

[michka]

I am pushing this message from Schoonder up as it may not be very visible at the end of the TDM1 thread. It seems important. Michka.

schoonder
Senior Member

Join Date: Jul 2008
Posts: 78
Re: T-DM! Expanded Access is Here !!!
Phil McMartin and his wife Lorraie were featured on a front page Boston Globe article. TDM-1 is the only treatment option Lorraine has but she must travel to VA for it because it is not offered in MA.
Phil writes:
My wife and I have gone to Capitol Hill once before to meet with Sen. Kerrys and Rep. Stephen Lynchs staff about our struggle to get T DM-1 expanded access to Boston. Many of you read our story in the Boston Globe, Jan. 5th. After the article came out, Sen. Kerry sent a blunt letter to the FDA. We are trying to keep up the pressure.
From the beginning last Sept., our congressmens staff have been very responsive. Contacting the FDA, and Genentech ,asking questions. How can you give access to someone in Va., but not in Boston ?, etc. I believe their questions helped influence Genentech to not stop ALL Expanded Access across the country as of last Oct. 31, as Gen. planned to do. Unfortunately, they have not extended access to Boston, New York, New Jersey, or all New England, yet . It has been 5 months plus.

Now we will meet with the " HELP " Committee, which oversees the FDA. After all, if the FDA hadn't made the mind-boggling decision to decline approval, we wouldn't be having this discussion !
So, any HER2 survivor out there who was denied access in NY, New England last Sept. 1 , and is still waiting, e mail me at pmccartinjr[at]comcast[dot]net. Tell me a short version of your struggle, any progression since Sept. 1, side -effects that you suffer with, etc. Give me contact info, and I will give your stories to the HELP Committee.
Oh, and include your congressmen/womens' names. Call your congressional reps, ask for the healthcare issue aide, and e-mail them the same report. ( You can find your reps on the Komen web-site, under the advocacy alliance. )