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Rolepaul
07-15-2014, 01:33 PM
Saw the movie. Also saw the movie Living Proof. I keep seeing these movies on what it takes to get effective treatment for people, and the sad part is that there is no change. I email women trying to get Intrathecal Herceptin at a therapeutic dose, and the doctors refuse to do so. We are trying to get IT Perjeta for Nina for Brain/Spine involvement, which would be a natural assumption based on effectiveness in the rest of the body, and we are the first to do so! I work in the industry and Nina is an RN with Clinical Trial Associate certification. I cannot imagine how Ron Woodruff felt in the Dallas Buyer's Club situation. I am not for untried drugs, but this is nuts. I do not want a movie, or a book, or my name in the news. I just want to see if a drug that is available because of work I did will save my wife when the same disease killed my mother.
Okay. Now time to get off the soapbox and do what I do best. Called CEOs and told them to tell their underlings to get moving. And told the insurance company regional manager that his company would pay for all the cost that is not covered by the drug company. And then I told them I would put the darn issue on National TV if they did not all step in line. If you see me on the news, wave to your Television set.

KDR
07-15-2014, 03:03 PM
Paul,
Always in your corner. Best to Nina.
Karen

Pamelamary
07-15-2014, 11:27 PM
Good luck Paul! We are all grateful for powerful advocacy.
Best wishes to you and your wife.... Pam

Coux92
07-16-2014, 07:36 AM
Thank you for all you do. I pray Nina gets the treatment and a great response.

Mtngrl
07-17-2014, 12:58 PM
I'd add one movie to your list, Paul, "How to Survive a Plague." The people most affected by HIV/AIDS also had the stigma of their sexual orientation, which was terrible, of course. There were those who thought it was God's punishment for sin, and that nothing should be done.

The AIDS activists used techniques that breast cancer advocates also appropriated. We have them to thank for paving the way.