Sandy H.
06-02-2005, 05:29 PM
Well, first I want to thank each one of you for your response in my time of need. It has been over 2 months since applying for the Miltex. On May 26 I called my local Senator who happens to be a woman who supports the supplements some of us take. Her Secretary asked me to write a letter explaining my situation. I faxed it that same day. When I did not hear anything by May 31st I called her office. I was told it would be looked at this week. She then asked me if I was out of the Miltex and I said, "yes". She then said we will get right on it today! A few more calls for more information. I then went for my Herceptin June 1st and had a talk with the Data Manager who oversees the clinicial trials and drugs not approved with my hospital. She told me that they just keep asking for the same forms to be submitted and that most of the time no one will return her calls. The Miltex was to be sent back to Germany from JFK airport May 27th. She left messages on all phones not to send it back it is needed here! I told her who I had contacted and she said, "good". After I got home she called me saying she had received a call from the FDA's supervisor who denied the release of the Miltex saying if my doctor would write another prescription and write a letter saying it is not approved and can not be purchased in the U.S. that they will release it. That they had a call from the Senator this person did not know how that happened. Today, I got a personal call from the Senator's secretary telling me it had just been released to my doctor!!! Amazing when you get the right person and go to the top what you can get done. This is rediculous to have to go through this but it happened. If anyone needs help with this please feel free to ask me. My Data Manager said if anyone on the board is having problems getting the Miltex she will be happen to help with suggestions now she knows what it takes. Apparently, it has to do with what the physician puts on the prescription and the letter. Another hurdle behind me. Now its on to scans tomorrow. Hugs, Sandy