‘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?”