up home page bottom

Add a comment Bookmark

French German version Spanish version Italian version

headermask image

header image

I need this treatment. Please help tell the FDA.

I find this extremely important.  I received this email (see below) and excuse me for just copy and pasting, but the Cystic Fibrosis Foundation, and myself, and others with CF, need your help.

Personally, I am waiting with baited breath for this treatment to hit the market.  Inhaled Aztreonam, AZLI, was expected to be available this past September.  My doc already had plans to put me on it. Due to some changes of FDA board members, this drug is now having to be restudied which means it probably will not hit the market for another two years… a wait too long for some of us.  We are asking for your help in supporting the reconsideration of the application already submitted to the FDA in approving this drug.

I have not yet used AZLI… yet.  But Aztreonam is one of the most effective IV antibiotics I use. Having this drug available in inhaled form could add years to my life.  I have cultured Pseudomonas Aeruginosa for many years (and sometimes many straigns of it).  Having this drug gives me one more weapon against this very harmful bug.

Pseudomonas not only causes horrid infections, it also causes severe irreversible lung damage.  Aztreonam is used as common practice in fighting PA, but right now it is only available via IV.  Having this drug applied directly to the problem, via inhalation, would only make the fight against PA easier and more successful.

Since Aztreonam is only currently available via IV, I only receive it when I am really sick. This inhaled version would be dosed three times a day, 28 days on, 28 days off.  Which basically means I would be fighting my PA with Aztreonam every other month rather than the once to four times per year when I do IVs.  Couple that with the Tobi, inhaled Tobramycin, which I would do on the off months and I would be continuously fighting this evil PA.  I bet that my frequency of hospitalizations would go down given the extra boost I would get from the drug.  Oh my! What life would be like?!!!

Please consider writing the FDA in support of this new drug.
Read additional information about AZLI and the importance of the drug for treating CF.

Cystic Fibrosis

About Cystic Fibrosis Donate Now Get Involved About the Foundation
We are making a difference in the fight against cystic fibrosis.
Dear Advocate, Have you or someone you know had a personal experience using
Aztreonam Lysine for Inhalation (AZLI)?

AZLI is a promising new inhaled antibiotic treatment that appears to help combat the
pulmonary symptoms of cystic fibrosis.

By sharing your experience using AZLI, you can help the Foundation as it works with the
Food and Drug Administration (FDA) to move this new therapy forward.

To help, simply:

Read additional information about AZLI and the importance of the drug for treating CF.

Thank you for helping us work with the FDA to advance vital new treatments for cystic fibrosis.

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) FIGHT CF
E-mail: publicpolicy@cff.org
Web: www.cff.org/GetInvolved/Advocate

P.S. Please forward this email to anyone who might be interested
in sharing their story about using ALZI.

————————-

The CF Foundation is a donor-supported, nonprofit organization committed to controlling and curing
cystic fibrosis, a life-threatening genetic disease, and to improving the quality of life for those with CF.
To learn more about the Foundation, visit www.cff.org. and subscribe to receive information by e-mail.

________________________________________________________

P.S.  Thank you.  ~salty.

If you liked my post, feel free to subscribe to my rss feeds


One Comment

  1. I will be sure to keep you posted on its effectiveness. I was told in September that I was a candidate and they would call me. They never called, but the study representative signed me up Friday when I went to clinic at Tampa General.

    The meds should arrive in 5-9 business days and I’ll go in to pick them up, along with a new e-Zflow. I’ve been off Tobi for a couple of years, and I think that might have caught up with me a bit because I’ve been doing Colistine instead.

    This is the big hope for my resistance table, since I’m resistant to all forms of Cipro and respond best to tobramyacin, especially by IV, which is NOT the way to go for me.

    Thanks for sending this e-mail our way.

    2. Jesse Petersen on November 24th, 2008 at 1:23 pm

One Trackback

  1. [...] closed up to my tonsils the size of golf balls, it was amazing to me. (I am giving credit to the Inhaled Aztreonam study which I started only 28 days ago and adding a new asthma [...]

Post a Comment

Your email is never published nor shared. Required fields are marked *

*
*