I believe there are many, many out there who are advocating & honestly trying to make a difference, but people are ONLY doing what they KNOW HOW to do! Some search the web for articles or advocacy groups, others write their Legislators & the President, some created petitions, still others blog about it. I truly believe with the vast, vast number of people being affected by this (& worse, the number who WILL BE if we dont ensure some real change) there ARE enough individuals to make our voices heard! I really think a HUGE part of the problem is that while we’re each trying to do our part individually, we are ALL OVER THE PLACE!! There are endless posts, blogs, webpages/pain groups, petitions etc. Many are working individually but we have been UNABLE TO COME TOGETHER AS ONE GROUP!!! We NEED ONE group, ONE petition, ONE website or organization-ONE UNIFIED FRONT! I think that’s one of the most critical aspects we have not accomplished thus far! I believe it’s a big part of why we are not being heard either! How do we do it though, that part can be a challenge with pain patients. Between us, between ALL of us, for the GOOD of all of us (& our families because it’s going to affect them first hand as well,) we need to figure this out!! If we are ALL UNITED under one umbrella, under one name and for ONE CAUSE, I believe then, we would be too big to ignore; that’s when we will be heard! If others agree please, post your suggestions! If you don’t agree & think we need another plan of action that’s great, reply with those suggestions as well but, I think, we desperately NEED to take ACTION as a One Unified Force!
This commentator is DEAD ON.. These comment is in regards to this post
There is no “spoonful of sugar” to help this go down
When you have thousands or millions of voices all talking … maybe be saying the same words… but not doing so in unison.. sounds like a UNINTELLIGENT NOISE !
There are several important points to keep in mind…
- Congress has passed and tweaked all the laws/rules/regulations that are impaling the chronic pain community and causing a huge denial of care and a lot of unnecessary pain and suffering.
- Congress is really not much about which party is in the majority.. it is more about the seniority of the individual members of Congress. You clean the House of all incumbents..there is no one with seniority because they were all elected on the same day. The same thing with the Senate .. you remove 34 members up for re-election this year and you disrupt the seniority process and create chaos in both the House and Senate… Just like all of these long term members of Congress have disrupted and created chaos in the lives of all too many chronic pain pts and those prescribers who have tried to treat them as patients.
- There was only 126 million votes during the last Presidential election and five million between winner and loser. With a 106 million chronic painers , their families and all those in healthcare that are being screwed with… deciding who gets elected should not be a issue. Register to vote by mail and vote by mail.. you don’t even have to leave your home to be part of the 21st century revolution.
- There needs to be a non profit charitable organization needs to be created whose basic reason to exist is to raise a “legal war chest” to challenge the constitutionality of many of the laws that the FEDS and States have passed as well as the reinterpretation of existing laws that has been done outside of a agency’s legal authority.
- There shouldn’t be much pt involvement by chronic pain pts in challenges to the constitutionality of all of these laws.. except to continue to donate a small amount ($5/month) to keep the process going forward. A law firm will handle all the day to day activity.
- Other option once sufficient monies have been amassed… work like other non-profits… hire PR firm and find well known personalities – with chronic pain – that can appear in commercials to ask for more donations. Expand the legal war chest and take legal action in different directions and against different entities… including class action lawsuits against specific corporations and organizations that has caused harm to those in the chronic pain community.
Filed under: General Problems
Is there a way for us to contact the pharmaceutical company and maybe get them to advocate with us ? Maybe we as people with nerve damage can partner with them ? They know how or have lobbyist that can benefit them as for profit and us to get medicine back ?
We have such an organization. It is called the US Pain Foundation. They are reputable and they do not even charge dues like the AARP does. They are a nationally recognized not for profit.
Everytime I bring this up in a chronic pain advocacy group, someone tries to smear their reputation WITHOUT ANY BASIS IN FACT. They were one of many stakeholders that put together a plan called NPS (National Pain Strategy). It discusses the need to access alternative therapies in addition to medical pain management (opioids) when appropriate. If the NPS was only discussing the need for opioids it would not be taken seriously. Some people see the words “alternative therapies” and they stop reading at that point. They assume that the NPS is anti-medical pain management (opioids) and that simply is not true.
We must consolidate under one umbrella AND DONATE AS IF OUR LIVES DEPENDS UPON IT BECAUSE IT DOES.
It is beyond frustrating.
I agree with us all uniting, and need legal help…how do we do this?
I personally miss the American Pain Foundation. They worked hard and helped all the patients to get access to pain meds in the first place a couple decades ago. When they shut down I knew hell was on the way.
A few senators, Andrew Kolondy and Propublica did a great job in causing APF to disappear, all because of greed for money with a bunch lies.
But I’ll certainly be glad go with the masses and donate if all these people can ever figure out who that organization is going to be.
Your right, Only one! Enough with the egos.
I agree with all said. If there is a way to take the encroachments of the Justice Department in the law-making to task (and I believe there is), then the main thing a non-profit assigned to do this would need is legal assistance. Without that, we are just spinning our wheels. I have the perfect case if there is ever an attorney willing to back us. I would offer 1/2 of whatever I were to gain from winning a lawsuit for the damage done to me through prosecutorial misconduct, if a lawyer would just step and and say “I’ll do it.” But so far none have.
Intriguing concept: “Vote No For Congress” has a ring to it.