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This might be a little long, but I would appreciate everyone taking the time to read it!
Recently, a new member published a post stating their belief that pulmonary rehabilitation and medical treatment should be free. I received a couple communications to the effect that the post was political talk and as such was not appropriate for the forum. I made the decision not to remove the post. I wanted to use this opportunity to clear up some guidelines and explain my reasoning.
Each and every week I get several calls from people stating that they can’t afford medications, to see their doctor and in more than a few cases could not afford pulmonary rehabilitation. Several people have posted the same thoughts on COPD Social. Herein is my dilemma.
While 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 was designed 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!
So, the question needs to be asked: 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?
I recall speaking with a lady in Tennessee. Her husband self employed as a handyman, after loosing his other job, and because of the economy work was "tight". They had 3 children. The mother was diagnosed with Alpha-1 related COPD. In order to be able to take care of her children she was going “door to door” asking neighbors for any extra inhalers they might have which were not affordable to her. She stated she didn’t care what the medications were as long as they allowed her to take care of her family. She needed supplemental oxygen but could not afford it Foolish...maybe, dangerous....certainly, pitiful and sad…most definitely! I get many calls just like this every day. 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.
To sum this up, I believe that there is a difference between advocating for change and the politics we see every time we turn on the news. If I see posts advocating or denigrating a particular candidate or political party, 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!
The second issue was a member publishing their phone number and asking people to call them. I removed the phone number because I believed that it not only endangered the person but also our community. We ask that people communicate through the forum or by private message. If after a period of time a couple individuals develop a friendship and wish to communicate by phone that is your decision and right.
There are many scammers out there, so please do not give out your phone number or any contact information unless you are very sure of the other person’s intentions, and never publish this information on the forum.
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It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.