I just wanted to update some current events while I have time. Rose took me to Dr. Hogan, my neurologist, on Tuesday. The company that was providing my trial medicine decided to end the testing abruptly and, having won FDA approval, will put the medicine on the market in September. Meanwhile, I no longer can get it, so Dr. Hogan rearranged my medications. [We will decide in the Fall whether to try to get the new med again. We do not know how much they will cost.]
Rose and I think the company has acted irresponsibly as seizure medications are critically important and should not be changed abruptly. Dr. Hogan and the nurses who work in the clinic agree. So, our feelings toward the company are very negative, especially since I have gone to a great deal of trouble for several years to take part in the study. We were already angry because a few years ago the study coordinator told us the drug company would provide the meds at no cost to test subjects like me, should the FDA approve it. Later, I was told they would not provide it. Naturally, a new drug like this will be extremely costly when first introduced.
I go back to see Hogan on June 21st.
Linda and I are going to the lake Friday morning. She's staying with me until Wednesday when Goldman arrives.
More but breakfast is ready.
Rose and I think the company has acted irresponsibly as seizure medications are critically important and should not be changed abruptly. Dr. Hogan and the nurses who work in the clinic agree. So, our feelings toward the company are very negative, especially since I have gone to a great deal of trouble for several years to take part in the study. We were already angry because a few years ago the study coordinator told us the drug company would provide the meds at no cost to test subjects like me, should the FDA approve it. Later, I was told they would not provide it. Naturally, a new drug like this will be extremely costly when first introduced.
I go back to see Hogan on June 21st.
Linda and I are going to the lake Friday morning. She's staying with me until Wednesday when Goldman arrives.
More but breakfast is ready.
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