Where are they now?

I wish there were a way that mainstream media could highlight the courage and tenacity of so many people who share a commonality by this disease. That in of itself would be an inspiring message in our respective countries and communities.  As impressive as that would be, a closer look at what is breaking through the smoke now would be phenomenal. I have in vain looked for evidence of a global effort of this magnitude anywhere in recent history. Patients asserting their rights as human beings to obtain a life saving, recognized procedure, through educating their medical providers is a brilliant story. Fictional top grossing movies pale in the shadows to this event. How many of us fully understand that there are formidable forces at work to extinguish the fire that ignites out passion? Even with all of their efforts, we are not fading into the background. This movement could be likened to a baby taking its first steps. As with most noble causes, there needs be a period of discovery and forward motion well planned and executed. Two steps forward and one step back is a much greater effort to contend with than our detractors imagined, or could have anticipated.

We have few recognized movers and shakers among our number. All of us have a fascinating story to tell, yet we are not the elite of society. We take the risks, provide the volunteers for drug trials and studies that overwhelmingly end in failure and cover up. No treatment, snake oil, drug or therapy has yet to pull this disease into the twenty first century. The time is far overdue. They reason that it is safer and more efficacious to perform counterfeit procedures on patients hoping against hope that they are the fortunate recipients of the genuine angioplasty. Our desperation, as it has been termed, is a boon for them. They portray us as needy, cognitively impaired unfortunates who don’t know what is good for us. Where were they when Barb Farrell was literally at death’s door? Because of an unusual circumstance, her plight was brought forward for all to see and judge. There are no reporters in any of the other hospitals or private homes where the same situation is being played out at this very moment.

Why not?