On Wednesday November 20th we celebrated World COPD Day around the world. On the same day a patient friend posted in a COPD Patient FB group. When I read this post it brought a tear to my eye. Not just because of the outpouring of frustration and desperation in her message, this patient spoke for the majority of COPD patients.
“We need a way to raise money that would go towards research for a cure for copd. I don’t want a vest that tells me I am not breathing well.. I want a CURE. I don’t want a new inhaler that does the same old thing as my old inhalers. I want a CURE. It has been 19 yrs.. and I don’t see anything closer to a CURE then I did then! Sorry if I sound angry,, but I am tired of raising “awareness” and not doing something about the disease! I post things about COPD,, people that have it will share it. My friends that don’t have it dont share it,, what good does that do? Do we have a place to donate money that will actually go toward finding a cure? The Copd Foundation spends most of their money on awareness. I am AWARE of it.. 95% of the people on my friends list are AWARE of it.. and probably 100 people on my friends list are DEAD because of it. We need a CURE! 16 MILLION of us need it! 165,000 people that will die of it this yr need a CURE! What about the over 1/2 million people in the next 5 yrs? THEY NEED A CURE! If I was well enough I would become a patient advocate to go to Congress,, but I would most likely get kicked out. Because I am tired,, I am tired of having a disease that people think I deserve, I am tired of having a disease that Congress turns their back on. I would not look like the healthy people on the tv commercials,, I would be wearing my oxygen and I would tell them,, I have a DISEASE and it is KILLING me and so do MILLIONS of other people! They do not deserve to die”!
This post made me have a good long think about the plight of COPD. If I was to be brutally honest, as a COPD patient you feel like a criminal who is being punished for committing a horrible crime. Your sentence is to slowly suffocate until your last breath has been spent. The reality is we probably made a poor lifestyle choice, fell victim to environmental factors or were born with a genetic abnormality.
For this crime, we are lumbered with a stigma. A stigma which crosses all demographics of society. From the uninformed public to doctors who believe we did it to ourselves and because of this, we don’t deserve the same standard of care as others. If you’re a patient or carer reading this, you’re probably nodding your head. Most patients have experienced this stigma, for those who haven’t, it’s only a matter of time.
My patient friend talks about being tired, tired of the stigma, tired of raising awareness, tired of government inaction. As patients we are encouraged to join patient groups and become advocates, so we can raise awareness for our disease and attract more funding for research. I’ve been an advocate for nine years and have organised countless fundraisers. I have raised money for lung organisations in Australia, United Kingdom and the United States, as have many other patients.
But for what? We don’t see any new medications, just old ones delivered differently. Research is appalling, especially when compared to the “popular diseases” and pulmonary rehabilitation programs can be hard to access. We don’t have celebrities championing our disease and to be perfectly honest I’m disappointed with grants given to researchers to research dead ends!
So here I am, about to embark on yet another fundraising campaign, to push myself physically and mentally in the hope I can raise money for research. Why should I bother? I’m tired, like many advocates. I am tired of asking companies for money, I’m tired of companies undervaluing what I and other advocates do. I’m tired of being asked to test devices and to make favourable comments, only to be told sorry we can’t donate to your fundraiser after spending tens of hours of my time trying to help them. I’m tired of companies making millions out of patients and giving little to nothing in return. I hope those companies are reading this and feeling just a little guilty.
If you are a professional working in the respiratory community, I would ask you to consider your role. Not just your work role, your role as an advocate. Whether you agree or not with my rant, advocacy helps everyone, and everyone needs to be an advocate. So now I have vented my frustrations just like my patient friend, it’s time to dust myself off and get myself motivated to raise those much need funds. I just hope whatever I raise its used wisely!