<<Disclaimer: Verify this information before applying it to your situation.>>

I received 5 responses to my original post asking for stories and ideas 
to share with my Congressman (or Senator) concerning the difficulties 
we face as celiacs in finding safe drugs, cosmetics, and supplements,  
I am including them all here.  My comments are in brackets.

Our plans have been scaled down and although we plan to visit either 
our Congressman or Senator, we don't have an appointment and don't have 
sufficient time or information to put together a policy position paper. 
  So our "Plan B" is to talk to the local Congressional staff or try to 
get an appointment when our elected officials are in town on a break.

Thanks to those who responded.

Jackie in AZ
************

I haven't any suggestions re specific companies; however, my biggest 
problem is that my insurance insists that I take generic brands only. 
Therefore, even if I do look up the original brand-name drug, I know 
that it is not what I am getting. Rather I get a generic brand which 
the busy pharmacist is generally less than helpful when it comes to 
telling me the name of the company that made the generic brand I
just got.

My recommendation (wish) is for a law which states that unless gluten 
is an integral part of the active ingredient in a drug, that gluten 
never be used in any drug. There are plenty of other ingredients that 
can be used as fillers. [This is also of concern to CSA who, I believe, 
will be developing a legislative proposal soon.]
**********************
I always call the drug company of a prescribed drug and ask to speak to 
medical information/or the chemist.  They have always been most 
cooperative in finding answers for me.  Most recently I spoke to Pfizer 
re/a drug from a recent new acquisition.  They told me it might take 
2-3 days for definite confirmation.
I usually ask the prescribing doctor for an alternative med. in case 
the original is not GF.  As it turned out, #1 was not GF (I was 
notified the following day) and I proceeded to drug #2. 
Ingredients can change often and therefore I don't rely on GF 
medication lists but sometimes do use them as a starting point.  It is 
pointless to rely on outdated information.
In the more recent years I have found drug companies very 
cooperative...I learned early on not to ask about gluten, but about 
W,R,O,B and any derivatives, also about any of these things used in the 
production.  (I do include oats since many companies are familiar with 
these 4 grains)  I was diagnosed 15 years ago and have been doing this 
a long time.  Years ago I found many of the chemists were not familiar 
with celiac requirements, but not today.
I do not rely upon the pharmacist or the doctor for this information 
since they are not reliable and both are usually too busy to become 
involved.  Years ago I went to a leading celiac researcher as a patient 
and he was clueless about meds and gluten---told me he had no idea and 
was concerned that patients asked him this information.
You can also get an idea from looking at the ingredients of drugs from 
the PDR (your doctor should have a copy, a large bookstore, or library) 
but I always confirm with the drug company itself. 
Years ago I worked for a large drug company and heard that the CFO was 
upset that so many calls were being received re/the GF status of their 
drugs.  He obviously made changes because today that company is one 
listed as having all GF drugs.  So......we can make a difference if we 
are proactive.
********************
  I believe the Congress will be on their long Summer Break in July, as 
most want to spend the 4th at home since it is a good time for 
campaigning, etc... but their staff will be around and honestly these 
are the best people to talk to anyway -- they are the people who get 
things done and make things happen.  You might want to specifically ask 
to meet with the Health Care Legislative Assistant (LA) and check to 
see if any of your representatives sit on one of the health-related 
committees.  www.thomas.gov can help you find all this information.  
Also, you can contact your Representative's local office and they can 
help you arrange your visit as well.
I worked for a U.S. Senator a few years ago, but moved back to Kansas a 
few weeks before September 11th.  The security issues may have changed 
some of this, but see if you can get a Capitol tour from someone in the 
Congressperson's office.  They are superior to the regular tour and you 
don't have to wait!  Also, you use to to be able to get White House 
tour tickets from your Representative, which also bypasses the line.
Lastly, when you do meet with the Congressperson or one of their aids:
Choose one (max two) issues to talk about, focus on talking about the 
most important aspects of the issue and don't burden them with too many 
details, then give them something in writing that summarizes your 
points, provides them with the additional information and most 
importantly gives them your contact information. Following your 
meeting, send a thank you note that again quickly summarizes your issue 
and continue to follow up with that person via phone or email.  Offer 
your assistance and develop a relationship with this person, but 
remember that they are very busy, over-worked people who juggle many 
many issues at once.  Hope some of this information is helpful.  Have a 
wonderful trip to DC - it is an amazing city.  My favorite tourist 
destinations are: the Newseum, the monuments at night (no crowds, less 
heat, very pretty), the Kennedy Center deck over looking the Potomac, 
walking the neighborhood streets of Georgetown and then going to Ben 
and Jerry's for ice cream:)
*******************
I relate completely.  I have been gluten-free since August 2003.  
Recently, I took Ambien because it was on the www.glutenfreedrugs.com 
website as gf; however, I had reaction.  I went on to later find out 
many people react from this drug.  I called the manufacturer and left a 
voice mail message...no response from the company.  Then, I sent an 
email...no response from the company.  This is VERY unfair that this 
French company could do this.
******************
[Finally, I spoke to the President of CSA Foundation, who told me about 
their legislative efforts.  They have legislative workshops in October 
and March.  Although they don't have a legislative proposal yet, two 
issues they are concerned about are how celiacs are treated in 
hospitals and generic drugs.  I was not aware of this, but apparently 
many health care plans require their clients to use generic drugs.  
However, there are many manufacturers of generic drugs and each uses 
different fillers and there is no guarantee that you will be provided 
with the same generic manufacturer's drug every time your prescription 
is refilled.  In the eyes of the health insurance company, all generic 
drugs are created equal to the brand name drug and equal to each other. 
  However, this is not the case if you are celiac or have other food or 
chemical sensitivities.

She also suggested that I visit the Air and Space Museum and the 
Smithsonian Museum's Art exhibit.  She said both had food outlets that 
were gluten-aware.]
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