I am beyond elated to see your concise writing of an idea I have also been contemplating, with no idea how to make it happen. You are exactly right about the pain groups not being the vehicle. I joined two pain groups on FB hoping that would be a starting point, but have found them to be the wrong model to enact change. I have been a severe chronic pain patient with unresolved peripheral neuropathy pain for almost 10 years. The love of my life and mother to our two daughters passed away in 2012 as a secondary result of chronic unresolved nerve pain that followed her primary diagnosis & treatment of ewings sarcoma that included 20+ surgeries ending with a hip disarticulation procedure. Between our two health issues, money is becoming more and more of an issue. I am foregoing physical therapy and 3 of my prescribed medications as I don’t have the budget for them. The insurance plans my 20-something daughters have available to them on the open market are unaffordable and basically catastrophic coverage. My older daughter is still making monthly payments for her co-pay or co-insurance for an emergency room visit over 1 year ago. The medicare plans I have available to me this year are INCREASING the costs of my opioid narcotics even though they have been on the market for years. Is this simply a method they consider ok to force chronic pain patients off their medications?
It is this model of a union or co-op that we need to affect change. It requires money and organization that the patient safe havens on facebook do not provide. In those groups we are still individuals writing our government so the comments appear to be easily ignored. The chronic pain patients in one of my groups are submitting comments around a discussion/proposed plan to remove all high-dose narcotics from the market. These pain patients are receiving back emails & letters that suggest they should start weaning themselves off narcotics!
I have been on long term disability for 10 years now after a 20+ year career at IBM. I am anxious, willing and partially able to support your efforts to make this patient union a reality. Please let me know what I can do to help. I have some information I prepared 02/2017 for my Texas State Senator and Representative that I would love to email you. One of my main themes is patients need real advocacy and that policy made without consideration of the patients’ input are never policies that benefit the patient. It’s like taxation without representation. If we can start chatting please let me know. I am a medium member and partner. Let’s make it happen!
Just one more thought Dr. Noorchashm, in a post I made just 4 days ago here on medium includes my concern for patients’ lobbying efforts: “ My heart sinks further as I know the millions of unorganized chronic pain patients currently under attack,nay the hundreds of millions of just plain honest hard working U.S. citizens, will never compete with the $100 MILLION + U.S. DOLLARS in LOBBYING and PAYOFF MONEY given to “our” Congress and Government policy makers which pays for hidden legislation and policy concealed under a pig with lipstick.” Thanks for listening and sharing. Keith