Look Beyond FEV: All Areas of Lung Failure Must Be Flagged 🫁

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Fiona and 19 others have signed recently.

The issue

I am launching this petition because I am living through a dangerous loophole in our medical system, and it terrifies me to think about how many other people are suffering in silence and being denied the very medical help that could save their life, prevent permanent organ damage, or keep them out of the hospital.

When you get a lung function test, the computer software looks at FEV1—which is how fast you can blow air out of your mouth. If your breathing speed looks okay, the computer automatically stamps the word "Mild" at the very top of your report. The dangerous flaw is that doctors, when in a 15min consultation, often just read that one word, "Mild," and look no further. They don't look at the deep tissue numbers underneath. This causes a massive roadblock to getting help.This is exactly what happened to me—Because I could blow air out at a normal speed and had no congestion, my report headline said "mild obstructive defect." Because of that single word, I was turned away and denied specialist care for 11 months. I am struggling with severe air hunger every day, but the system treated me like I was fine. But when I finally found a doctor (the 4th) who actually took the time to listen, sit down, and look at my report with a fresh set of eyes, past that "Mild" headline to read the actual raw numbers, they found a major problem: My DLCO dropped to a critical Z-score of -5.25 (just 45.9% of predicted capacity), and my KCO dropped even further to a staggering Z-score of -5.79 (operating at just 35.7% efficiency). Testing often doesn't test past a -6. The hospital doctors even wrote on the page that my numbers suggest "parenchymal or pulmonary vascular disease" (serious tissue or blood vessel issues). Any Z-score below -1.64 is abnormal. My score of -5.79 is a massive red flag. Yet, because a computer template prioritized my breathing speed, I was dismissed doctor after doctor, denied referral after referral and left walking around with severe oxygen transfer failure and zero medical support. 

This is a simple, low-cost fix that saves money:   We are not asking the government or hospitals to buy expensive new medical machinery. This change requires nothing more than a simple software update—adding a few basic lines of computer code to the templates that diagnostic laboratories already use every day. It costs next to nothing to update a computer template, but leaving patients misdiagnosed costs our public health system thousands of dollars in unnecessary emergency room visits and delayed treatments. Fixing this software loophole is cheap, it is simple, and it will save lives.

Why We Need Your Signature: I was lucky. I finally found an amazing doctor who listened, looked at the raw data, and fought to get me an urgent CT scan and continuously fought the system to get me outpatient hospital appointment for August. But what about the people who don't have that? What about the patients who trust the system, get told their test is "mild" or "normal," and go home believing their lungs must be fine while their lungs are actually failing?

Thank you for reading my story and signing/sharing when possible, it goes a long way in helping to make a quick yet much needed change. 🫁

The Decision Makers

Chief Executive Officer, Peninsula Health (Frankston Hospital)
Chief Executive Officer, Peninsula Health (Frankston Hospital)
The Board of Directors, Thoracic Society of Australia and New Zealand (TSANZ)
The Board of Directors, Thoracic Society of Australia and New Zealand (TSANZ)
MGC Diagnostics (MedGraphics) and Vyaire Medical (Jaeger)
MGC Diagnostics (MedGraphics) and Vyaire Medical (Jaeger)

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