An Important Message From The Community Manager

Please Read!

I posted something similar to this prior to the elections, and as our nation seemingly becomes more polarized I feel the need to clarify what we as a COPD community strive to do on our COPD360 Social platform. Exposed to 24/7 news cycles, it is hard not to be exposed to views we either share or don’t share. At times we almost feel helpless, like our voice is not heard and we respond by posting on different sites to express our views or frustrations. This brings up the question as to what is acceptable to post on our site.

This morning I deleted a post that spoke to a couple things this community is NOT about. First it spoke in regards to political figures and then addressed the question of assisted suicide. While the post was intercepted before it appeared on the site, I felt this was a good time to make clear some guidelines and explain my reasoning.

COPD360 Social was designed to be a platform to share knowledge and support regarding COPD, it was also designed to give patients, caregivers and professionals a voice. I in no way wish to see the platform become a referendum on politics (that is better served by a medium like Facebook), and do not believe that it has a place on our forum. The fact is, the present political climate has served to sharply divide us as a nation, individuals and threatens relationships we once had as friends.

COPD360 Social is a community, a family, and achieves its success by providing a platform for people who have a common interest and indeed a common goal: socialize with other like ourselves, to learn more about COPD, improve our quality of life and come together as one voice to advocate for effective treatments, and dare I say it…..a cure! In short, we don’t discuss death and division, we speak of life!

So, the question needs to be asked as to what defines political talk and what are appropriate topics to discuss? Does advocating that treatments like pulmonary rehabilitation or medications be available to everyone with COPD represent political conversation? We know that for people with COPD, pulmonary rehabilitation is vital in improving health and quality of life as are medications. We also know that there is a large segment of our COPD family that can’t afford pulmonary rehabilitation or even their medications. So then should a person’s health and their quality of life suffer because they cannot afford these things? Should we as a group be advocating that such things be available and affordable to all who suffer from COPD? Does this constitute political talk or does it reflect the compassion we as a nation should have for those dealing with a chronic and devastating illness?

While the post this morning was intercepted before it appeared on the site, I felt this was a good time to make clear some guidelines and explain my reasoning.

The fact is medications and treatments are not affordable for many in our community. I have heard many stories of people having to decide between eating and staying warm or getting medications they needed to survive. Supplemental oxygen that allows for an acceptable degree of mobility is increasingly difficult to obtain as is even qualifying for supplemental oxygen. The effort to save money is directly affecting our access to medications that work for us. The research we need is often not considered a priority, and often we are restricted from treatments because of cost. To advocate for these ARE NOT political views…they are human views held by a community affected by the third leading cause of death!

To sum this up, I believe that there is a huge difference between advocating for change or the politics that only serve to divide us as a community. If I see posts advocating or denigrating a particular political representative or political party or talks about issues that do not involve our community as a whole, I will remove the post. It has no place on our forum and only serves to divide us as a group. However advocating for affordable medications and treatments, I believe should be a right of all citizens whatever their political views, and particularly for those facing the challenges of dealing with a life threatening chronic illness. Greed and saving money should have no place in our society when our health is in question. I see the responsibility of our government, whatever political party in in power, is to make sure that we have the available tools we need to remain productive citizens able to maintain an acceptable quality of life. That should be our rights as citizens and not a political argument!

At times you might be asked by us to respond to situations that we feel endanger our community, such as healthcare. You as a member of this community are under no obligation to do anything, especially if what we are requesting goes against a political belief you might have. We will NEVER take a political stance, only a human one. We will never attack, advocate or endorse or even mention any particular political individual or philosophy; only issues that affect our quality of life. We expect the same from every member of the community as it pertains to COPD360 Social.

I have many friends who do not share my political views, yet we remain friends because that which brought us together as friends has nothing to do with our politics. We share other interests and we choose that our friendship is far more valuable than any disagreements we might have in regards to political views. We celebrate that which unites us, not that which divides us! Our one common thread here on COPD360 Social is we all share the same challenges in dealing with our disease. We reach out to each other to share those challenges in an effort to support those who need our assistance and to learn of new possibilities; that at its core is what our community is about, and if I have anything to say about it, will always remain so!