Bronchiectasis and NTM Research

We express a strong desire for new treatments for bronchiectasis and NTM Lung Disease, yet during a webinar with Dr. James Chalmers, a surprising revelation emerged. When patients were polled, only a small number said they had participated in research or would be willing to.

WOW! Is it just me, or does this seem like a disconnect?
Certainly, there are good reasons why someone might not want to participate in a clinical trial. However, for those who meet the criteria, I ask that they remain open to discussing participation with their doctor.

Dr. Anne O’Donnell at the recent North American BE/NTM Patient Conference, emphasized the importance of participation in research. (The following is a transcript and may contain minor errors):
​
“Everything we did 10-15, years ago was …taken from the cystic fibrosis bronchiectasis knowledge. But it turned out that a lot of these that work in cystic fibrosis bronchiectasis actually don't translate well to non-CF disease. 

So, fortunately, now we're in the era of new development for bronchiectasis. Some of the drugs are truly novel. Some of them are actually repurposed drugs…old drugs that are being looked at specifically for this disease. 

It takes a lot of time to develop a drug and a lot of money, and generally, from the (inception) it takes about five years to bring it to a clinical trial, and then those clinical trials usually take up about six years and then if the drug has a positive trial, it has to be evaluated by the FDA and the regulatory agencies around the world and that can take several years. 

This all takes a lot of money and that's why it's not like we have late breaking drugs every year…(We) want to know that the drug is safe and effective, we want to know that the new therapeutic makes patients feel better, function better and survive better. So, it's a big hurdle to get a new drug and we're fortunate right now that things are in the pipeline and even close to completion.”

With this in mind, the next time you have the chance to complete a trial survey or participate in a clinical trial, please consider it. 

Your involvement could be a crucial step toward discovering new treatments.✨✨

#bronchiectasis #clinicaltrials #MACLungDisease