LDuyer wrote:JQLewis,
I am assuming the OSA of your website is for Obstructive Sleep Apnea?
My suggestion is that you don't limit to obstructive. Sure, it's the predominant condition but it might best to stick to SA or something like that.
Also, you might include questionairs on your website (unless they are there and somehow I missed seeing them, sorry). That might help focus the consensus feelings for the purpose of prioritizing points. Not everyone may feel the same way on certain things. And that's not a bad thing. But polling everyone would be useful, to get at what is most important to the majority, so that it can be articulated with numbers behind it.
And yes, advocacy is hampered by the manufacturers, DMEs and Doctors -- particularly in this country -- but what is the alternative? You can't expect them to go away. And they are needed. Yes, they lobby hard for their way, that makes it all the harder in this country to influence them. And while many may feel that non-profit organizations or associations are in the pocket of the commercial entities, it simply isn't that simple. You might look at the issue from a different (not necessarily a valid) view -- manufacturers and DMEs and even doctor organizations should be required to contribute to the costs of advocacy, for the very reason that they do profit from patients. An alternative to that is for advocacy to be funded elsewhere, like from political entities and/or the public. Also, not so easy. I'm only saying, I urge volunteer advocacy to be as open-minded, collaborative, and inclusive as possible, in order to have an effective voice.
Just my 2 cents.
The only way to get institutions to change their ways is to threaten their profits or their power. The Montgomery bus boycott is one example. Other ways to threaten profits are less direct. If you rob an institution of its good name, if you embarrass them, that costs them money and influence. Upton Sinclair wrote "The Jungle" and the meat packing industry was faced with an existential crisis. They had to change or be ruined. That kind of dramatic change is very rare. "Silent Spring", "Unsafe at any Speed", these single, dramatic efforts are notable, but they're the exceptions. Normally change is slow, incremental, and requires the efforts of a lot of people over a long time. It's thankless and anonymous. It takes extraordinary levels of commitment, intelligence and patience. Without these pressures though, the rich and powerful will never change. Why should they? They're doing just fine, thank you.
Gandhi is my model for this kind of activity. He never sought to harm his opponents. I honestly believe that if these institutions stopped acting in such a stupid, short-sighted manner, they'd make
more profit. That's fine with me. I have nothing against profit or capitalism. Not all profit is the same, though. Short-term investments and long-term investments are taxed at different rates because there's a recognition that long-term investment better serves the interests of the larger number of people. Short-sighted decisions are always made in the name of protecting the interests of individuals. Corporate CEOs who know they should be thinking about the long-term picture but who have to meet a certain goal in the next quarterly report or Wall Street will abandon them, and they'll be out in the cold. That's what the little guys have to fight against, and it ain't easy. But neither is it impossible. It's been done many times before.
As far as the name goes, sure. That's a detail to be decided by whatever group is willing to make the commitment. No one should be married to any idea unless it bears fruit. In South Africa Gandhi once made a compromise so stupid his followers turned on him and nearly beat him to death. Representing people is not without its risks. There's no school which can teach you how to walk the path of the reformer. You have to figure it out as you go, and it's not an easy path to walk.
