The Pressing Need to Redefine "COPD". - Lung Conditions C...

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The Pressing Need to Redefine "COPD".

2greys profile image
19 Replies

Chronic obstructive pulmonary disease (COPD) has now become a global epidemic, affects over 300 million individuals world-wide, has become the third most common cause of death and is one of the leading causes of chronic morbidity and hospitalization, resulting in an enormous economic burden. This special issue of Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation includes 3 important new analyses of the large COPD Genetic Epidemiology (COPDGene®) cohort concerning diagnosis, progression and the consequences of this disease. These striking new data have important implications for how we should define COPD in the future and how we should recognize different phenotypes. This will also be important in directing a search for new disease-modifying therapies that are likely to be most effective in early disease.1 The new data have important implications for health care providers, particularly general practitioners, for regulators and, most importantly, for patients.

journal.copdfoundation.org/...

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2greys profile image
2greys
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19 Replies
megshafer profile image
megshafer

2greys, in my humble opinion, when they put all obstructive lung diseases under COPD, in 1965, they did a huge disservice to patients. They are all different diseases, that do different things to the body, and have some of the same symptoms, but not all. Asthma was under COPD, then removed. For diseases that have been around for so long....documented back to the 1600s, and they are no further ahead than they are, can you imagine tech being so slow? Lol, every other major disease is leaving lung diseases in the dust. Stigma, lack of funding....they really need to get over the smoking part. Most diagnosed haven't smoked. I mean Vertex is making a fortune on the new CF medications...why are the Pharmactical companies so behind on respiratory advancements, in being complacent, they have harmed people, and lost more money than they realize, greed, backfired on them.

Rant over, have been doing reading and research. It just doesn't add up. P.S. they say the numbers of patients with lung disease is grossly underestimated. More people don't know they have it, than the ones who do.

Take care, stay well⛵⛵

SquirrelsHolt profile image
SquirrelsHolt in reply tomegshafer

Very well expressed @megshafer and your points are totally valid. I'm afraid I've always thought that us lungies will always be left years behind other medical issues as the pharma companies can't see such huge, outrageous profits so why should the major players bother?💞

megshafer profile image
megshafer in reply toSquirrelsHolt

What s amazing is there is more money in the more advanced medications, like Vertex is making more money with their new CF medications for alot less people than a the Pharmactical companies and their inhalers!!! Maybe they will realize that, and Vertex stock keeps rising!!

Jaybird19 profile image
Jaybird19 in reply tomegshafer

Sorry Forgot to say that practice records say i am listed as having COPD although i have bronchiectasis. Says it is just an umbrella but I am told it is completely different.

megshafer profile image
megshafer in reply toJaybird19

But, if you read and research on Chronic Bronchitis and bronchiectasis and emphysema and the fibrosis that are obstructed lung diseases, they are all so very different. That's why COPD (the umbrella of) causes so much confussion, I believe it keeps many of them uncured, no advancements....you can't make progress with 3 diseases in one....impossible.

in reply toJaybird19

They need re educating. Bronchiectasis is not copd. It is completely different lung damage ans is complex. It requires different diagnosis, treatment and management. Unfortunately too many GPs treat bronch as copd because they are not trained in bronch. Get on their case and teach them a few things

Jaybird19 profile image
Jaybird19 in reply to

It takes a lot of confidence to tell a doctor you know more than them !

I am learning what i can myself.

in reply toJaybird19

You can look up the guidelines for bronchiectasis. Also the guidelines for copd. Print them both off and slide them on to the GPs desk. I feel that my health is far more important than the risk of offending an ignorant GP.

R1100S1 profile image
R1100S1 in reply toJaybird19

Ditto

in reply toSquirrelsHolt

So as there are millions of us what can we do about it...maybe a naive question but a question all the same.

Jaybird19 profile image
Jaybird19 in reply tomegshafer

Agreed

Resp nurse tells me i have COPD at routine appointment so it is recorded my notes as that

I am now trying to get a rescue antibiotic replaced and they are finding it very difficult as it is not on my repeat scrip. I had it two years ago and have just had to use it due to 5 yr old spreading his cough around. As children do.

megshafer profile image
megshafer in reply toJaybird19

If you had advanced medications...the need for antibotics would not be needed as much!!! But, if they labeled you COPD, you should have a rescue pack, if you don't get one....I would certainly make a urgent appointment, you don't want to get real ill, nor loose lung function due to the lack of a simple antibotic.

Take care.

SquirrelsHolt profile image
SquirrelsHolt

Thank you @2greys for this intetesting link. I wonder whether items such as this evermake any sort of headline news, or not? A sad condition with sadly little funding apart from Charities or medical schools for research but never to the level of investigation that's needed.😭

Whitechinchilla profile image
Whitechinchilla

Thankyou so much for sharing your research with us 2greys.

This is a very interesting article and not as heavy reading as I expected.

Perhaps with the advent of National COPD Day next week we will hear more about this complicated set of illnesses.

Anything that speeds up the diagnosis of these “ invisible” conditions must be welcomed.

To read that this is now the number 3 common cause of death is beyond horrific.

What is it going to take for the “ holders of the purse strings “ in our NHS to get a wake up call?

Or should we be blaming the politicians for the allocation of monies?

Either way this is bordering on an epidemic.

Please can we appoint a P. M. who is brave enough to stop the sending of foreign aid overseas and concentrate on the residents of our own country?

Oops.

Sorry to digress but we have to start somewhere.

Hope you are settling back into your work routine and taking things easy to start🤔

The sad thing about about all these reports is that they should have done 30, 40 r even 50 years ago. 😩

Whitechinchilla profile image
Whitechinchilla in reply to

Very true Don 😉

megshafer profile image
megshafer in reply to

Very true Don.....

Peppy05 profile image
Peppy05

Hi 2greys, all my pulmonary doctor told me is that I have boderline copd, never told me what kind I have.

Hopefully the enormous burden will loosen the purse strings so research, trials and cures can be found in our lifetime.

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