OXYGEN FRUSTRATION
The most frustrating thing about oxygen is the fact that it's been around for 40 years- with no major improvements! It's antiquated, cumbersome and makes COPD patients tied to it feel like chained animals! Yet, it's the only thing prescribed to so called "improve the quality of our lives."
It's insane that in this day and age, we have to wait so long for an effective breakthrough in treatment , considering the number of people who are predicted to get COPD in the US soon- with numbers in the millions! More effective treatment for this disease can be fast-tracked by the FDA. Why it isn't a priority-- is something the COPD community and COPD advocates should be outraged about.
Hi.
I hear you. While researchers are making progress -- it certainly is frustrating how slow this progress is moving -- and especially given how many people are currently effected by COPD. Advocating or faster innovation of "effective treatment" is something I have heard some talk about in recent years -- although I am not sure how that is progressing. Your voice matters, and expressing frustration is a powerful way to drive change. Perhaps, beginning with people like you and me having conversations like this -- will help speed up progress for us. Wishing you all the best. John. community moderator.
Aspen/Member
Thanks for the encouragement John! I don't know why there's been such a lag in "effective treatment", but I do know that powerful organizations like The American Cancer Society and The American Lung Association get serious results from the FDA!! Perhaps that is what's needed to get fast tracked results for COPD. But first we need to band together to let OUR VOICES BE HEARD! Patients, moderators, advocates and care givers alike need to join in on these conversations. Some COPD patients shy away from being vocal, but while we're sometimes short of breath--we're often long on thoughts. And (on good days) we need to participate in forums like this to voice our concerns, hopes and need for information. History has shown that if we don't speak up for ourselves--no one else will. It is my hope that more people will join in the quest for innovative treatments for COPD, if not a cure from this debilitating disease.
which agencies would we contact if we wanted to send a message or ask questions about what research may be taking place?
Hi
, thank you for reaching out! The American Lung Association has a good page about clinical trials that might be a helpful resource! https://www.lung.org/research/clinical-trials It provides information and links to current trials being conducted in U.S. How are you feeling today? Please keep us posted on what you learn and how you are managing. Wishing you a gentle day. ~Allyson (team member)
Thank you. I'm interested to learn all I can about Bronchoscopic Lung Volume Reduction (BLVR)
, here is an article we have on it: https://copd.net/treatment/surgery-overview/lung-volume-reduction. If you'd like to learn more about others experience with it you can start a forum on it here: COPD.net/forums. All the best, Sam S. (COPD team).
