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Paula_MAC-2007
@Paula_MAC2007

Posts: 131
Joined: Mar 24, 2013

US Food & Drug Admin was interested in NTM patients' drug experiences

Posted by @Paula_MAC2007, Aug 9, 2016

Wondering about research for better drugs for NTM / MAC? I just stumbled on this flier …
The US food & Drug Admin had a public meeting of NTM patients & caretakers last October 15, 2015.

https://www.ntminfo.org/images/media/News/pfdd.pdf

Here’s further information about that event:

https://www.eventbrite.com/e/nontuberculous-mycobacterial-lung-infections-patient-focused-drug-development-public-meeting-registration-17523776086#

I sure would like to know the outcome of this public meeting.

Liked by heathert

REPLY

Thanks for posting this Paula! I think @boomerexpert in particular will be interested to read this info. Also tagging @heathert @janovr

PS: Paula, Nice to “see” you in your new profile picture!

Liked by heathert

I would like to know the outcome of this meet also if anybody has it

Hello all,
I contacted the FDA (an email address was listed in the information) and received a reply from a Pharmacist involved with this. Below is her message and links to info. Colleen Young — note the 2nd link — it’s for upcoming meetings to get input from patients about DRUGS/TREATMENT for OTHER diseases. Might be helpful to other groups on this blog.

Good Afternoon Paula,

I have placed below a link to the NTM meeting webpage which contains a transcript, meeting recording, voice of the patient report, and presentation slides you may find helpful. Thank you for your interest in the Patient Focused Drug Development initiative.
http://www.fda.gov/Drugs/NewsEvents/ucm453877.htm

For more information regarding upcoming Patient Focused drug development meetings and past events feel free to utilize the link below as well.
http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm347317.htm

Shanon Woodward, PharmD, RPh
ORISE Benefit-Risk Analysis Fellow

What’s everyone’s thoughts on the report from the 2015 NTM conference?

I’m not seeing anything hopeful for curing NTMs. Am I missing something?

Anyone have any reports more promising we can read?

Thanks,
Kay

Liked by heathert

Perhaps…this was a “call to arms” to devise better treatments for the disease, noting increasing numbers of infections, increasing probability of future infections, lack of treatments specific to the disease, and the poor functioning of existing piece-meal treatments (numerous side-effects; what treats one form of NTM doesn’t treat another and there’s numerous permutations). It’s the FDA’s first step in a veeerrrry long process of developing and approving a new drug. The good news: NTM’s are now on their radar. The bad news: it will take many years to see something concrete…

Liked by heathert, tdrell

I have just written to the FDA about my idea of inhaling the good lung bacteria to kill the MAC bacteria as they cannot co exist. They may think I am crazy but worth a go, if you dont try you will never know. It makes sence that we are killing off all the good lung bacteria with chemicals etc around the home and therefor not inhaling them to help regulate the MAC bugs, then MAC takes over. I also agree with Paula that our hormones may play a big part in this,mine are in crazy mode at the moment, cant wait for them to settle. (maby you can tell )Sounds like they are finally trying to do something for us, hope they hutty up.yipeeeee.

This is so cool, Heather! I am starting a “let’s do our part to get more research and better treatments for ourselves..” This is perfect and just the type of advocacy I’m hoping to promote/inspire! Would you be willing to join that discussion and repeat this there?

Liked by heathert

@boomerexpert

This is so cool, Heather! I am starting a “let’s do our part to get more research and better treatments for ourselves..” This is perfect and just the type of advocacy I’m hoping to promote/inspire! Would you be willing to join that discussion and repeat this there?

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Hi boomexpert ,definitly, let me know how. I just emailed National Jewish about it also, not easy to know who to email,so difficult to get in touch with thesse places, think I emailed NTM research but it was complicated. will let you know if I hear anything, good to get in touch even if my idea is terrible, lol, may give them a good laugh anyway.

Here the discussion I mentioned…just started it: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/

@kaystrand

What’s everyone’s thoughts on the report from the 2015 NTM conference?

I’m not seeing anything hopeful for curing NTMs. Am I missing something?

Anyone have any reports more promising we can read?

Thanks,
Kay

Jump to this post

Side note: Nice to see you here @kaystrand. Would you like to make this lovely picture your profile picture? Here’s how:
https://connect.mayoclinic.org/get-started-on-connect/#how-to-upload-profile-picture

Let me know if you have any questions or problems uploading it.

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