‘Don’t Punish Pain’ Rallies Draw Local Media Coverage

By Pat Anson, PNN Editor

Hundreds of people – including some in wheelchairs and others on crutches – took part in a nationwide series of rallies Tuesday protesting the poor treatment of chronic pain patients.

“Don’t Punish Pain” rallies were held in over 80 cities from Anchorage, Alaska to Jacksonville, Florida. The protests were organized on Facebook by a grassroots group of pain patients, including many who have lost access to opioid medication or seen their doses drastically reduced due to federal and state guidelines that target opioid prescribing.   

Rally organizers were disappointed by the low turnout in some cities. Only a handful of people showed up for rallies in Las Vegas and Providence, Rhode Island. But over a hundred patients and their supporters rallied in Oklahoma City. And about two dozen people rallied on the steps of the state capitol in Olympia, Washington.

Due to their small size, the rallies have yet to attract the national media attention that organizers are hoping for.

But they have been successful in drawing local media coverage and getting reporters to tell a side of the “opioid crisis” that’s rarely addressed.

DON’T PUNISH PAIN RALLY IN OLYMPIA, WASHINGTON

DON’T PUNISH PAIN RALLY IN OLYMPIA, WASHINGTON

“We’re invisible. We’re hidden in our homes and our beds and in our rooms,” Crystal Irwin told CBS4 News at a rally in Denver. “People don’t know what we’re going through.”

Ben Lawrence has lived with chronic pain since an accident in 2009. He told CBS4 he was still able to work until his doctors stopped giving him opioids.

“They make you feel like you’re a drug addict,” Lawrence said. “They don’t give me the medication I need to go to work. I want to go to work.”

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Rally organizers in Stuart, Florida told ABC25 News that patients are being unfairly targeted in the opioid crisis when the real problem is illicit drugs.

"They are calling this an opioid crisis when actually it's a fentanyl crisis, and they can't control the drugs coming into the United States. But they can control people like us who get our pain medication to survive," said Michael Courtright.

Patients are calling for major changes in guidelines released by the CDC in 2016, which discourage doctors from prescribing opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted as mandatory by insurers, regulators and healthcare providers.

“Chronic pain patients all across the country are losing access to their pain medications that they depended on sometimes for 20 or 30 years,” Kristen Blanton told Fox55 News in Urbana, Illinois.

Don’t Punish Pain organizers held their first nationwide rallies in April and are planning another series of protests in January.

‘Don’t Punish Pain’ Rallies Set for Saturday

By Pat Anson, Editor

Dozens of protests are being planned across the United States this Saturday to draw attention to the plight of patients suffering from chronic pain and illness.

The “Don’t Punish Pain” rallies were organized by a grassroots group on Facebook and quickly gained traction in the pain community – where there is growing frustration over reduced access to pain medication and medical care.

“One day we were talking and decided we could have a rally. And it went from there. It just exploded,” says David Israel, a 30-year old Michigan man disabled by chronic pain.

Israel says the group is planning rallies in 47 states – mostly at state capitols – and has obtained the necessary permits. For a complete list of the times and locations, click here.

The primary goal of the rallies is to get the Centers for Disease Control and Prevention to change its opioid prescribing guidelines, which have caused many doctors to stop treating patients with opioid medication or to drastically lower their doses.

“There are millions of people that are being affected by this. Not only do we need to get the CDC to change but we also need to get help for the people who’ve been abandoned,” says Israel.

Israel was recently abandoned by his doctor and has been unable to find a new one, in part because of a disputed drug test. He suffers from hydrocephalus, a condition that causes spinal fluid to build up in his brain, leading to headaches and other neurological problems.

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“I don’t have a doctor at all right now,” said Israel. “I need pain meds, but I don’t have any because there was a false positive last year that I proved was false, but the doctor said there was no such thing as a false positive. She dropped my pain meds overnight.”

Some patients have complained to PNN that the rallies are poorly organized and they don't know who to contact or where to get further information. Perhaps the best thing to do is to join their Facebook group by clicking here and see if the information has already been posted.

The Don’t Punish Pain rallies were organized in the last few months without support or funding from other patient advocacy groups. It truly is a grassroots effort, supported by volunteers like Rhonda Posey, a Texas grandmother who suffers from arachnoiditis, a chronic spinal condition.

“It’s been fun to be involved with it, but it’s been quite a job,” says Posey, who helped organize the Don’t Punish Pain rally at Dallas City Hall Saturday morning. She was unable to get a permit at the state capitol in Austin, possibly due to the stigma associated with opioids.

“We had to have legislator sponsorship (for a permit). And we reached out to probably a dozen people trying to get someone to sponsor us and nobody would do it,” she told PNN. “They probably didn’t want their name associated with something like that.  

“Dallas has been very nice. Someone will be there with us the entire time. They’ve been real nice about everything, so it’s worked out well.”

Posey has also been successful in getting some advance media coverage of the rally from local newspapers and from KTRE-TV.  Her group plans to bring 50 pairs of shoes to the rally to represent patients who have died from suicide or medical conditions caused by untreated pain. 

She and Israel say it is time for different tactics by the pain community. Just signing petitions and writing letters to politicians about how the government’s response to the opioid crisis is hurting patients hasn't been effective.

“Nobody’s got the guts to standup and say wait a minute, there are other people suffering. It’s not just people that are suffering form addiction. It’s not just the families who are suffering from people who have died from overdoses," Posey said. “What about me? What about the millions of chronic pain patients that are suffering? What about us?”

A Pained Life: An Activism Primer

By Carol Levy, Columnist

Those of us who write columns and articles, or comment and tweet about chronic pain, beat the same drum, repeatedly: The world needs to hear us. We have to make our voices heard.

Unfortunately, the most common response seems to be along the lines of “We can't.”

The reasons make sense. Pain and disability keep many of us from being able to go to a rally, representative's office or a town hall meeting. Others say “I want to make my voice heard but I don't know how.”

I'm going to take my space today to give some ideas on how.

The latest outrage is Attorney General Jeff Sessions telling the country people in pain should just “tough it out.”

Because of my eye pain, I cannot write a long letter to him. He is not someone you can access merely by going to his office. Or find him on Twitter or Facebook.

You can, however, tweet to him at the Justice Department: @TheJusticeDept or leave a comment on their Facebook page: www.facebook.com/DOJ/

I sent a tweet. I included a video about my fight and struggle to live with trigeminal neuralgia: what it is, what it has done to my life and what it has taken from me.

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Do you have the ability to make a short video explaining your pain disorder and what it has done to your life?

If you have been hurt by the CDC opioid guidelines, can you tell them how? You can you tweet, for example: “CRPS has taken my life from me. Opioids have helped me to get some of it back.”

You could also tweet: “Opioids helped my chronic back pain. I was able to work, play with my kids and have a better quality of life. The CDC guidelines caused my doctor to reduce/stop them and I can no longer do those things.”

You could also find a link on the internet that describes your pain disorder and post it to Facebook: “This is what rheumatoid arthritis is. This is how the pain impacts us.”

If possible, you could also go to town hall meetings, offices or rallies where your legislators will be. I recently went to a town hall meeting on the opioid epidemic. Included on the panel were my congressional representative and one of my county commissioners. We had to submit our questions on a card rather than just ask them.

This was the second town hall meeting where my question, “How can you keep chronic pain patients safe when we are being blamed and often hurt by the actions being taken?” went unanswered.

Undeterred, I made sure to get to the congressman and the commissioner before they left the room. I made sure to come prepared with information, such as studies showing how rarely we get addicted and how the number of suicides appears to be increasing as opioid medications are being reduced or stopped.  

Two years ago, I asked my congressman if he could introduce a resolution making October 7 Trigeminal Neuralgia Awareness Day. I was told the House was no longer permitting those kinds of resolutions. Instead of throwing up my hands and walking away, I asked again the following year. This time he was able to do it.

To my astonishment, when I spoke with him the second time he remembered not only that Trigeminal Neuralgia Awareness Day was in October but some of the specifics about the condition itself.

This may help him remember us -- all of us – the next time Congress debates  the opioid epidemic. Chronic pain is more personal to him because of his encounter with me.

If at first you don't succeed is a cliché for a reason. It is worth writing, calling, visiting and emailing. The worst they can do is ignore you or say “No.” But trying another time may just get them to say “Yes.”

The tortoise didn’t give up when it looked like the hare was winning. We cannot afford to give up either.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.