If you go What: Don’t Punish Pain Rally When: Tuesday, Sept. 18, 10 a.m. to noon Where: Denver State Capitol

Sterling resident Brae Wilson is on a mission to get those suffering from chronic pain the help they need.

“I don’t know that people really understand what those with chronic pain go through on a daily basis,” she said.

Wilson has suffered from chronic pain for a number of years. She is on full SSI (Supplemental Security Income) disability, having been approved in 2008, for an intractable chronic pain condition. Her suffering began before that though.

In 2002, she had a cervical disc pop from reaching under a stove and it was not until 2013 that it was fixed/fused. During that time she tried everything from injections to radio frequency ablations, which are very dangerous procedures, “but I was desperate for pain relief,” Wilson said.

She says her pain was 100 percent occipital, so many doctors dismissed her. Then, in 2008 she found an “amazing” primary care provider who finally listened and she was given proper medications and went on to have her neck fused.

“I have used opioids for pain relief for many years, never abused and under contract, but 16 months ago, because of CDC (Center for Disease Control and Prevention), I was forced tapered and things have only gone downhill since then,” Wilson said. “Since the spring of 2017, I have fought hard to keep pushing through. If there’s an ‘herb’ I’ve tried it. If there’s an alternative treatment, I have tried them all, only to end up worse than before.”

This past March, she bent forward and a tingle went down her neck and she went down from a migraine. She has not gotten relief for her daily migraines since. Wilson was diagnosed with occipital neuralgia, a palliative illness for which there is no known cure.

“I used to be a productive member of society. Now, I’m limited to a life mostly in bed, in the dark, fighting my own health and my own body!” she said. “I’ve lost 20 plus pounds and counting due to the acute nature of my chronic illness and no relief. I can’t interact with family and friends and I feel so out of touch with ‘normal’ people now.”

Besides the physical effects from her disease, there also come many mental issues.

“I fight every day for my children and for too many that are lost due to suicide from chronic pain,” Wilson said. “I had hoped to get better, but no. My disease is also known as the ‘suicide disease.’ I’m literally a shell of a person now.”

She noted that suicide from pain is up 30 percent in the chronic pain community and 50 percent in the veteran community.

Wilson believes she needs palliative care, but is not able to receive it.

“I live in Colorado and not only are my state rights and laws not being upheld, but neither are my human rights! I am a palliative patient abandoned because of guidelines that exclude me!” she said.

According to the World Health Organization, palliative care improves the quality of life of patients and their families who are facing problems associated with life-threatening illness, whether physical or psychological or spiritual.

Every year, an estimated 40 million people are in need of palliative care, 78 percent of those people live in low-and middle-income countries. The WHO notes that overly restrictive regulations for morphine and other essential controlled palliative medicines deny access to adequate pain relief and palliative care. Worldwide, only about 14 percent of people who need palliative care currently receive it.

According to the WHO, palliative care is explicitly recognized under the human right to health.

Wilson believes an “over-inflation” of deaths from prescription opioids by CDC is part of the problem and takes issue with the CDC opioid guidelines Andrew Kolodony’s Physicians for Responsible Opioid Prescribing helped draft. According to CDC’s guidelines from 2016, she is exempt from palliative care.

“I should be getting care, but I am not,” Wilson said.

Under CDC guidelines, palliative care is defined in a manner consistent with that of the Institute of Medicine as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of treatment for any serious illness that requires excellent management of pain or other distressing symptoms. Patients can experience persistent pain that is not well controlled. There are clinical, psychological, and social consequences associated with chronic pain including limitations on complex activities, lost work productivity, reduced quality of life, and stigma, emphasizing the importance of appropriate and compassionate patient care. Patients should receive appropriate treatment based on a careful consideration of the benefits and risks of treatment options.

“Yet, sadly, we in chronic pain are being stigmatized, left abandoned and untreated with many dying,” Wilson said. “I don’t know when pain became a dirty word.”

In May, Governor John Hickenlooper signed Senate Bill 18-22 into law. It states that opioids can be prescribed for those with chronic pain that typically lasts longer than 90 days or past the time of normal healing.

“I’ve been dealing with a chronic daily migraine, along with my other many health conditions, since March. Even with my doctor of 10 years declaring me a palliative patient, I still cannot receive help. Why? ‘We don’t treat chronic pain’ is the main response,” Wilson said.

According to international human rights law, countries have to provide pain treatment medications as part of their core obligations under the right to health; failure to take responsible steps to ensure that people who suffer pain have access to adequate pain treatment may result in the violation of the obligation to protect against cruel, inhuman, and degrading treatment.

“I no longer have any quality of life, I am supposed to get help and be protected, but I am not,” Wilson said, adding “the problem is not from us in chronic pain. What we have is an illicit fentanyl epidemic and millions like me are caught in the middle of bureaucracy and politics. Why are we being left to just suffer and die?”

In an effort to get her voice heard, she will be participating in the Don’t Punish Pain Rally at the State Capitol on Tuesday, Sept. 18, one of many rallies being held around the nation. That rally, along with rallies at Colorado Lincoln Park in Greeley and Colorado Rawlings Library in Pueblo, will be held from 10 a.m. to noon. Wilson invites those interested to join her.

For more information on the Don’t Punish Pain Rally, visit dontpunishpainrally.com.

Callie Jones: 970-526-9286, cjones@journal-advocate.com