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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
If we have this information maybe we can compile it in a letter to the companies doing the Nitric Oxide studies. Novoclem Therapeutics uses a nitric oxide technology for the treatment of Cystic Fibrosis and other respiratory diseases. http://www.novoclem.com awhitaker@novoclem.com
Contacts
Contact: Chris C Miller, Ph.D. 778-899-0607 miller42@mail.ubc.ca
Locations
Canada, British Columbia
Diamond Centre Recruiting
Vancouver, British Columbia, Canada, V5Z-1L8
Contact: Chris C Miller, Ph.D 778-899-0607 miller42@mail.ubc.ca
Sponsors and Collaborators
University of British Columbia
Novoteris, LLC
Investigators
Principal Investigator: Jeremy D Road, MD Professor
CONTACT
Steven Lisi, Chief Executive Officer
AIT Therapeutics, Inc.
Steve@AIT-Pharm.com
Bob Yedid
LifeSci Advisors, LLC
Bob@LifeSciAdvisors.com
(646) 597 6989
Johannes Lehmann of Technical University of Munich demonstrated that the new inhibitor blocks especially the enzymes Pks13 and Ag85, which play a key role in the development of mycomembranes. beta lactone EZ120
Replies to "If we have this information maybe we can compile it in a letter to the companies..."
druginfo@fda.hhs.gov I just wrote to FDA. Told them they probably have people on their staff that have mac and don't know it
@unicorn love it! will use it in my email as well!
cool. love it
OK...here's what I wrote:
Almost 1M Americans have MAC or some other NTM…a number that is growing rapidly (in fact, some of your staff most likely have the infection and don’t know it…for most, dx comes when the infection is far along). Since it is transmitted through water and soil, and is no longer limited to those who are immunocompromised as it once was, it is quickly becoming a public health threat. If there were a reporting requirement for NTM’s as exists for TB, I feel confident the numbers would be perhaps double those cases currently known.
The US is grossly underprepared for such a wide-spreading, as the current treatments (large amounts of antibiotics taken by mouth) are both 20 years old, and increasingly less effective – not to mention their toxicity and extreme side effects. Clinical trials for new, inhaled (thus direct), and more effective treatments are found as far away as Israel, yet little is being done here.
Please don’t wait until it gets to epidemic proportions to encourage research on and approve better treatments. Pharmaceutical companies will find plenty of customers, and you will have gotten ahead of this rather than simply reacting once it’s too late.
Thank you.
Terri Benincasa
great great letter!!! So smart
Excellent!
@boomerexpert Thanks for sharing the email with us, Terri. I was just wondering how I could get mine started. This will help me get my thoughts together.
@ling123 glad!
One dr told me its lack of progestrone really could believe he would say that
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Chris Miller is the guy that accepted me into the canadian trial, but had to drop out because our insurance does not cover canada. lHe's a nice guy, but said his partners were nervous about the lack of coverage. Canadian are not wanting to cover Americans anymore, because we keep sneaking across the border to get free health care, who knew....