As I mentioned earlier, my note to Dr. Lippe was written very spur-of-moment, not so much because she works for Pharmacia Upjohn, but mostly after I realized that she was ALSO president of the LWPES.  In thinking about this issue further, I feel strongly (or, at least, this is my feeling at the present moment....it is always subject to change!) that, if there is any way to make this a reality with the drug companies, we need the pediatric endocrinologists on board with this. 

 

The proper channel of communication, I think, should be from patients to doctors; and from doctors to the drug companies.  The doctors need to agree, first, that producing a timed-release pill would be a big boon to CAH treatment. Until then, I think patients would not have much credibility, going directly to the manufacturers.  Not that I really think so, but---to play devil's advocate for a moment---what if we had it all wrong???  It would be irresponsible for the manufacturer to do things without checking out the facts, first.  And that means with the medical profession.

 

So, I am thinking that, as patients, we need to work through our doctors---not individual doctors, but an organized group like the LWPES, which, in a sense, represents ALL (or most?) pediatric endocrinologists.   The thing to do would be to get them to agree with us, then have them advocate for us. Also, as patients, it would probably also pay to be organized and have a group voice, rather than speaking only as individuals. Perhaps, this is a project that CARES would be willing to take on.  Kelly??? 

 

Anyway, for what they are worth, these are my thoughts at the present time.  As I said, they are always subject to change.  Look forward to what others have to say.