Amy Partridge lives in Pittsburgh. She has Arachnoiditis. Like many with it, this professional woman who worked for a health insurance company for nearly two decades, has had to quit her job.
But she didn’t quit working—she turned her attention to fighting for chronic pain patients.
Last summer, she testified before the FDA. (Here’s a link to it)
I should have met her before now, but I hadn’t. Then over the weekend, I saw a conversation that she started on Twitter—a conversation that was so “on point” that I reached out to her.
She captured the same feeling that I get practically every time I review the reader commentary on many National Pain Report stories and columns. That is the growing intolerance that many chronic pain patients have toward just about anyone who doesn’t toe the line on the “opioid controversy”.
Her theme was pretty basic—chronic pain patients need to be smart about how they comment and, quite frankly, more tolerant and less negative about people who either may say something they disagree with or are only now surfacing as supporters.
I called Amy and asked her if I could put together Tweets into something for all of us to read (and consider)—She agreed.
So, if for some reason, this post angers you—be mad at me (Ed Coghlan). To Amy, you should be thankful. She is a serious, intelligent and active chronic pain patient who not only is being heard at federal agencies, but is making an important point. That is that the debate seems to be changing toward the point of view that the chronic pain community has been asking for, for three years.
Amy’s eight tweets consolidated read like this:
I’ve seen some troubling comments lately. We have a worked very hard to impact change. Now that the CDC, FDA & AMA have all issued statements, we have the foundation to impact positive change. It will not happen overnight and it cannot happen 3 years ago.
As a pain patient I DO understand the frustration of 3+ years of having to fight for care. But if you’re unhappy with the clarifications, absent a time machine to undo the guidelines altogether, what is it you think WOULD help? I am not understanding the constant negativity and genuinely want to know what actions you feel would help. It will take some time to roll back state regs and payer policy. But without these recent clarifications, none of it would likely be possible.
So, while it’s frustrating to have to wait, this is the foundation we need to make those changes that WILL impact prescriber behavior. We are far from done advocating, but these announcements have been a MAJOR change. We finally have statements directly from these agencies to take to the medical boards, to insurers, etc. I just wanted to lay out some context from my perspective. When leaders come forward and advocate WITH us for the first time, what good does it do to bash them and tell them they’re 3 years too late? Do you realize that may prevent others from speaking out on our behalf when they see how others advocating for us are treated?
Again, I completely understand the frustration. I, too, have been denied care on multiple occasions. We HAVE to move forward, but with the lessons learned. We will continue advocating until access is restored! But while we do, please think about how your comment may be perceived. We’ve pushed so hard & waited for so long for agencies and industry leaders to stand up & recognize the suffering in our community. Now that they’re doing it, let’s greet them w/ respectful comments. You can disagree without being rude.
If all they get are comments saying how horrible they are, do you really think they’re going to have any inclination to work even harder to help us get the next round of changes implemented? Please, for the sake of the community, let’s keep it professional.
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