@A MyCOPDTeam Member I think I would have found a better word than stupid; like uninformed or something. You are forgiven as you have so many good ideas I'd hate to lose you as a friend over something as trivial as a word, even though our words are worlds apart sometimes.

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A MyCOPDT...

@the oldgraymare, yes, the FDA is legitimate. I don't think they're always right in their decisions, but they are legitimate. I've been part of groups that have met with them over a variety of COPD related topics and have friends who've served on some of the panels that vet and recommend approval or not to the FDA regarding COPD meds (one of my good friends was very instrumental in getting Spiriva approved in the US years ago). And JoanneC is right; they tend to be very conservative. In their defense, they really are between a rock and a hard place: if they approve something too soon and people suffer as a result, they've got a target on their backs; if they are cautious and take too long for some folks in getting a med approved, they have a target on their backs; and God help them if they make a mistake!!

On balance, I think they do pretty well. And I applaud their recent efforts to get patients into the research process itself, not just as subjects in the study but as Principal Investigators who help define the research question, determine the study process, help develop materials, add the patient perspective to the hoops that are required, look at who's a good candidate for the study, review the results, help with the reports, papers, publications and presentations at conferences, and get the results disseminated to both clinicians and patients so they can make better decisions regarding treatment. That's incredibly important as patients can actually change the design of the study because they know how patients would react, so rather than reporting on something interesting, they actually report on something that makes a difference to us.

@A MyCOPDTeam Member is absolutely right about participating in clinical trials; you can learn a whole lot about your condition and how you can manage and control it. I've learned a lot even testing to see if I met the requirements for clinical trials even when I didn't get to participate for whatever reason. Just ask questions about everything you can think of; the people who are working with you are usually very willing to tell you everything they know, and they tend to know a lot because they're involved with the research every day.

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A MyCOPDT...

Yes, mending fences and coming back together to the purpose we are here. Let it all go and start a new day.
peace

I got my best answers on COPD while doing several drug trials. My Dr, approved and I feel I have attained a better understanding and prolonger my life. Do your research! Jean is always on point!

@theoldgraymare; there are no stem cell treatments approved by the FDA for use in the lungs. There are many stem cell procedures that are approved by the FDA, but there are none for use in the lungs.

What the Lung Institute does is they take cells from your body, treat them in some way and inject them. This procedure is not approved by the FDA and isn't paid for by Medicare or Medicaid and not paid for by any insurance company I know of. The Lung Institute charges anywhere from $7000 to over $25000 for the procedure. In my opinion, and in the opinion of leading pulmonologists from around the world, this is the same as selling snake oil to desperate people.
I have several friends who paid $20,000 for the treatment, which did include dietary changes and exercise. They saw no improvement in PFT results, no changes in medications needed. There were small improvements in O2 usage and quality of life which were consistent with weight loss and exercise. They all died of COPD related causes within several years of the treatment and all admitted at the end that they had been taken for a ride.

The Lung Institute has registered a number of clinical trials at www.clinicaltrials.gov but these are all trials to prove the procedure isn't harmful to humans. There are currently a couple of stem cell trials that are being run by universities and research centers, but they are in the beginning stages. All that said, most of the leading pulmonologists in the country believe that stem cell treatment will be very instrumental in developing both treatment and hopefully a cure for COPD. We're just a long way from there right now and what the Lung Institute is doing isn't serving anything except their bank accounts. My opinion.