Vanessa Smith made some really great points at the Spain conference. I cringe at the lack of writing from the patients perspective in today's published articles (especially the professional ones.) How can we ensure these points are included in future articles?
We need all need to think about the following points as we write....thanks Vanessa.
Time and again the same core issues were identified, and, whether in Granada or Grimsby, Detroit or Delhi, it was apparent that the time has come for patients to unite, think, and act on a global scale.
Much work was packed into one long day – and a few COPD myths were exploded. One such myth is that COPD is a disease of the elderly – yet, as Monica Fletcher OBE and past chair of the ELF explained, more than half of those diagnosed are in the 40-65 age group.
The stigma surrounding COPD was seen as a major contributing factor to the low priority, low levels of funding and little research it receives. In fact, the term 'stigma' was replaced by 'discrimination' when Dr Inmaculada Alfageme, of the Spanish Society of Pneumology and Thoracic Surgery (SEPAR) spoke passionately and firmly stated, "this is a matter of discrimination – not just stigma – and we have to get past that". This was an issue that every one of us agreed upon.
Other shared experiences included the lack of public awareness, late diagnosis, and the constant references to smoking, reinforcing the widely held perception of COPD as a self-inflicted and deserved condition.
The lack of media attention was discussed. It was noted that barely a day passes without mention of cancer, diabetes, heart disease, etc. yet when journalists or editors asked why they do not produce more COPD articles the responses were that it's not “sexy” or “interesting” and even that "it doesn't affect women”.