<<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
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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pointless to rely on outdated information.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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