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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
Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .
We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.
Replies to "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..."
Yes I found it extremely interesting and Im glad you read it, the more we can get the MAC message out there the better, and I take every opportunity. We need to get these new drugs tested on MAC somehow, Maby we need to target a research lab mentioned and suggest it to them, there were many mentioned, if we chose one each, we could get somewhere. We have the cystic fibrosis and HIV communities with us and it would also help the TB community so together we are a big group. Together we can make a difference.
Heather, if you do the research on which lab you think may be the most likely to respond .. I would be willing to post it on our Forum and see if our group will try to individually contact them. Let us know. Thanks for your help! Katherine
I too placed a comment - looks like about an hour after Kate! Here's mine:
"NTM's are a fast growing scurge with no cure given use of only old generation antibiotics that offer minimal effect. Add to that the treatment for many is worse than the infection (since a minimum of 3 extremely strong antiobotics are used - killing everything in sight except the mycobacteria, the result is nausea, overwhelming fatigue, GERD, etc. with little impact on the target).
If the research community waits much longer to tackle this potential health crisis (given no reporting of infection required, it is believed to be more far-reaching than current stats indicate - and more mycobacteria are becoming resistant to the old-school antibiotics), you will be far behind the curve, unable to catch up.
Tackle this now, while your results can still be meaningful."
Thanks, maby try writing to a few would be our best option.
Yay boomerexpert the more we can get our message out there the better. We all need to write to the labs mentioned, worth a try. I will do a list of the labs when I get a min.
Terrif! I'll write to all once you post the list! Would you mind posting it on the NTM advocacy forum as well?
Boomer good one. I will use this as a base for my letters. Thanks.
Kay S
sorry I havnt done the list, have been busy, I was just going to use the companies used in the article so anyone could do the list if they get time before me.
Hello Heather, no problem! It is such a busy time of year. That will be a good task for the new year when things slow down for ANYONE on our Forum when they get some time and energy . . not to worry .. that is why we are a community of "all for one .. one for all"! I'm sure someone will jump in and put together the list when the new year arrives and someone has time. Just relax and enjoy the Holiday season! Hugs to you and to everyone at this wonderful time of year! Katherine
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Heather, with the Holidays .. I just had time to read this article .. REALLY interesting! Thanks for posing it!
Especially the part:
"Investing in an antibiotic firm can be a tough sell: To keep resistance levels down and maintain effectiveness, doctors often hold new drugs in reserve and use them only when needed and with limited patient populations. Companies support such good antibiotic stewardship, but they lament its business impact. “Uniquely among therapeutic categories, the better your drug is, the less it is going to be used,” Melinta’s Sun says. “And that is not a good investment thesis.”
I decided to comment the below:
I moderate a Forum for MAI/MAC .. MYCOBACTERIUM AVIUM INTRACELLUCARE COMPLEX for Mayo Clinic .. it is called Mayo Clinic Connect. You can see just how active AND how desperate people are for new antibiotic to help this disease at: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=17
I as an example took 4-5 antibiotics for 30 months in an attempt to stabilize this disease. WHY .. because the industry has NOT created more effective antibiotics for this VERY resistant disease. I do not think the drug industry realizes just how many of us are out here suffering .. I know they see only the dollar signs .. BUT the sheer numbers are rapidly increasing in this disease. PLEASE take a good look at the numbers and create a new antibiotic that is more effective for MAI/MAC!
Hope others on our Forum read this interesting article AND type in a comment .. the more the merrier! Hugs to all! Katherine