Novartis Oncology. I would like to harness the power of the village, the globally connected internet world, because I am absolutely confident that someone I know knows someone who is related to a person who lives next door to a VERY IMPORTANT PERSON high up in the ranks of the US branch of Novartis Oncology. Maybe even the person at the very top in charge of a drug called Zometa. Here's the story. Zometa is used to treat bone metastases in some kinds of cancer. To make a long story short, there have also been studies that show that it can prevent NEW bone mets in more than 30% of women and even extend life in 27 % of women BUT ONLY in one little group of women. Most of the ladies in the big studies didn't have much advantage. But it turns out that I fall into the category of people for whom it DID make a difference. Because my little group of cancer patients is so.. little...Novartis totally gave up on getting FDA approval for prevention uses, so of course insurance doesn't participate. I am confident that I could do many levels of appeal without success... and my time and energy are very limited, so I won't waste them.
We could buy the drug, (out of pocket price per dose including administration expenses is $1813.00) and tons of folks have offered to help us pay for it...but we are not going to do that because what i want to do is change the system, to set a precedent. I want all women in my situation to be able to get this medicine, and have insurance pay. Giving the doctors office or the hospital cash each month won't change anything for anybody else... we can do better than that, don't you think?
If you want to learn more about the whole thing, you can read this: http://www.esmo.org/Guidelines-Practice/Clinical-Practice-Guidelines/Supportive-Care/Bone-Health-in-Cancer-Patients but I'm not putting in a link because that makes it hard to share my quest!
So help me find the one perfect contact. Somebody must know someone who is connected to the right person. Novartis Oncology Zometa GO!