Disabled Workers and Chronic Pain Patients Need a Voice in Congress

By Amanda Siebe, Guest Columnist

I’ve always wanted to serve my community. Nine years ago, I thought the best way to do that would be as an EMT and firefighter. I wanted to be there for people in their hour of need to provide help and comfort. But in 2011, that goal came to an abrupt end.

While working as a restaurant manager, I fell and badly sprained my ankle. What should have been six weeks of recovery turned into full body Reflex Sympathetic Dystrophy (RSD). Because my employer placed more value on profits than they did on my health and safety, I continued to work in the kitchen, repeatedly slipping and falling before abandoning my crutches.

That simple injury ended up taking my dignity, financial stability, and eventually it will take my life. All because my employer didn’t have another manager to run the restaurant while I recovered.

Because of my disability, I never thought much about running for political office. But as I watched the lack of representation the disabled community has and felt the impact policies and funding cuts have on my life, I began to wonder: How could I not run?

I may not have the body that I once did, but my mind and passion are still sharp, as is the case with many disabled individuals. My wheelchair has not made me any less of a person or any less deserving of a representative who looks like me and understands my plight.

So here I am, taking a stand to say that while we may be disabled, we’re still worthy of quality life and pursuit of happiness.

I’m running in the 2020 election as a Democrat in Oregon’s 1st Congressional District to fight for the care and benefits we deserve and were promised.

Federalize Workers Compensation



As a disabled worker, I was assured there was a safety net to catch us if we got hurt, but I quickly realized that’s not the case. We aren’t told that workers compensation is run by private insurers who have more loyalty to their shareholders than to injured workers. These companies increase profits by denying injured workers medical care, leaving them to suffer as they fight to justify every treatment, medication and benefit.

Currently, each state dictates the worker compensation laws these companies follow, resulting in injured workers getting better treatment in some states than in others. A worker in New York is no more valuable than a worker in Alabama. That’s wrong and must change.

We must end this system of profits over people. We need to federalize workers compensation and prevent lobbyists and private interest groups from ripping apart our safety net. Workers who give their time, bodies and lives to employers must receive the care and respect they deserve.

End Forced Tapering of Pain Patients

Patients with chronic and debilitating pain have been hit especially hard during the opioid crisis. Patients on stable doses of prescription opioids for years are being forcibly tapered and left to suffer. Less than 3% of chronic pain patients become addicted to opioid medication, but doctors are still taking many patients off of these drugs.

When patients are forcibly tapered without properly managing their pain, it forces some to turn to the bottle, the street or suicide for pain management. Thousands have already died as a result of losing their opioids. This must stop.

Increase Disability Payments

After my injury, I went from being the family breadwinner, earning about $50,000 a year, to trying to survive on $735 a month. Young disabled people are especially hard hit because we don’t have decades of high-earning work history to draw on, resulting in lower benefits. That’s if they can even get on SSDI. Those who become disabled before 45 often won’t get approved for disability or have to fight for years to get it.

We must stop using age as a determinate of disability. If disability doesn’t discriminate based on age, then neither should our government.

Currently, there are 554,000 homeless people in our country. Of those, 40% are disabled and 30% are elderly. The average Social Security Disability benefit is $880, while the average rent for a 1-bedroom apartment in Portland, Oregon is $1,400.

It’s no wonder when our government pays starvation wages as a benefit that so many disabled and elderly become homeless. We can reduce our nation’s homeless rate by over half just by making SSI and SSDI comparable to a living wage. We must ensure our most vulnerable citizens have a basic quality of life, too.



The disabled community needs many other things that have gone ignored by Congress. While the Americans With Disabilities Act of 1994 was a huge step forward, it hasn’t been updated in 25 years. We need the ADA to match the knowledge and technology of today.

Many people provide care to disabled family members while still holding down a full-time job. It’s time we paid these family caregivers, who save insurers and healthcare providers hundreds of billions of dollars each year. Paying them would give needy families financial stability and independence.

Medicare For All

We’re an important voice in the healthcare debate and we need to be part of the conversation. If we are to have Medicare For All, then it needs to cover all conditions, all medications and all medically necessary treatment for all patients. Medicare as it currently stands is underfunded and not good enough. We need to fight for universal healthcare coverage so patients no longer have to fight for proper care.

Even though 1 in 5 adults are disabled, we are sorely under-represented in Congress. We need representatives who understand the unique situations and problems we face. We’ve been forced to sit on the sidelines as others decide our care, benefits and future. It’s time we had a say.

For too long, we’ve been victims of circumstance — told that we can’t run for office because our bodies prevent us from giving everything we have. That’s a lie.

Running for Congress isn’t what I thought I’d do be doing with the time I have left, but everyone deserves representation. We’re a part of this country and it’s time we were treated as such. It’s time for the disabled community to unite and be represented. We deserve better. 


Amanda was diagnosed in 2012 with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Since her diagnosis, she has advocated for chronic pain and disability rights. In 2016, Amanda was the recipient of the WEGO Health Advocate Rookie of the Year Award.

Amanda has dedicated her life to improving her community and has fought to teach her 11-year-old son, Keagan, the same. Further information about Amanda’s congressional campaign can be found on her website.

The information in this column 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.

Oregon Drops Opioid Tapering Plan

By Pat Anson, PNN Editor

An Oregon health panel has tabled a controversial plan that would have forced tens of thousands of Medicaid patients with neck and back pain to stop taking opioid medication. The Health Evidence Review Commission (HERC) voted unanimously to wait for additional studies to be completed later this year, which effectively delays any change in medical coverage under the Oregon Health Plan until 2022.

The forced tapering plan drew nationwide criticism from pain sufferers, patient advocates and pain management experts, who said it would “exacerbate suffering for thousands of patients.”

"Pain is complicated and different for everyone," said HERC chairman Kevin Olson, MD, in a statement. "We heard loud and clear that pain treatment and opioid tapering should be individualized based on the patient-clinician relationship. I am pleased that we were able to align the neck and back coverage with these principles."

If a patient with any chronic pain condition is not doing well with an opioid taper, HERC said the tapering should stop without consequence to the prescriber or patient.


But patient advocates say some doctors have already implemented HERC’s forced tapering proposal without waiting for it to be finalized.

“Many patients across Oregon have already suffered tapering from their opiate pain management or have been dropped by their physician as a result of this policy. Those patients who have already been affected deserve proper treatment for their medical conditions and must have their previous pain management regiments and care reinstated,” said Amanda Siebe, a pain patient and disabled activist who recently announced she was running for Congress in Oregon’s 1st congressional district.

“It's time HERC made up for the damage they've done to this community over the last 2 years, and give us the proper care and coverage we deserve to maintain functionality and quality of life. This fight won't be over for us until all patients are able to receive the pain management, care, and coverage they need and deserve.”

The HERC also voted unanimously to continue not covering treatment for five common chronic pain conditions, citing a lack of evidence on the effectiveness of any therapy, including opioids. The five conditions are chronic pain caused by trauma, post-surgical chronic pain, chronic pain syndrome, fibromyalgia and “other chronic pain.”

Patients advocates had supported a plan to cover those condition, not only with opioid therapy, but with alternative treatments such as physical therapy, acupuncture and yoga.

“The conditions being discussed are valid conditions, and I think they’re in need of medical treatment options. I think that opioids should be a part of those options,” Wendy Sinclair, a pain patient and co-founder of the Oregon Pain Action Group told the Bend Bulletin. “Doctors and patients need to work together and have those options available.”

HERC’s decision to reverse course on tapering was a significant and rare victory for the pain community, which rarely gets a set at the table or is listened to when political and regulatory decisions are made about opioid medication.

Last year over a hundred pain management experts signed a letter to HERC warning that its tapering plan would have been the most restrictive in the U.S. and was unsupported by treatment guidelines. That warning was recently echoed by the Food and Drug Administration, which said rapid tapering and forced discontinuation of opioids was causing “serious harm” to patients, including withdrawal, uncontrolled pain, psychological distress and suicide.

Oregon’s Opioid Tapering Plan Delayed

By Pat Anson, PNN Editor

A controversial plan that could force thousands of Medicaid patients in Oregon off opioid pain medication has been put on hold because of a medical expert’s potential conflict of interest.

Oregon Health Authority (OHA) Director Patrick Allen asked the Health Evidence Review Commission (HERC) to table a final vote on changes in opioid policy until his agency could get an independent review of the recommendations.

At issue is a task force plan to limit Medicaid coverage of opioids to just 90-days for fibromyalgia and lower back pain. Patients currently on opioids longer than 90 days would be required to taper off the medications and switch to alternative therapies such as acupuncture and physical therapy that would be covered by Medicaid.


The plan has drawn nationwide criticism from chronic pain patients, advocates and pain management experts who say forced tapering would “exacerbate suffering for thousands of patients.”

Allen said he learned this week that Dr. Catherine Livingston, a family medicine physician who serves as a contracted medical consultant to HERC, is also a paid consultant to the Kaiser Center for Health Research and the National Institute of Drug Abuse. Livingston helped draft the opioid coverage proposal.

“I have requested the HERC to remove a chronic pain management proposal from today’s agenda to allow OHA time to seek independent review to ensure no potential conflicts of interest compromised the way the chronic pain benefit proposal was developed for the HERC’s consideration,” Allen said in a statement.

“It is vital for the Oregon Health Plan to cover safe and effective therapies to help people reduce and manage chronic pain. Yet it is also vital that Oregonians have full confidence in the decisions the HERC makes to assess the effectiveness of health care procedures.”

No timetable was set for the independent review. At a HERC hearing earlier this week, The Bend Bulletin reported that state officials defended the opioid policy change.

“I think the potential harms associated with opioids have become clear,” said Dr. Dana Hargunani, chief medical officer for the Oregon Health Authority. “Harms shown by the evidence about tapering are less clear.”

But in a joint letter signed by over 100 pain management experts, Dr. Sean Mackey, chief of pain medicine at Stanford University, urged the commission not to mandate “non-consensual forced tapering.”

“We fear the HERC’s proposal is, in essence, a large-scale experiment on medically, psychologically and economically vulnerable Oregonians, at a moment when Oregon has already seen a significant reduction in opioid prescribing and prescription opioid-related deaths,” Mackey wrote. “The evidence supports that this proposal represents an alarming step backward in the delivery of patient-centered pain care for the state of Oregon.”

Other members of the task force questioned the distinction between forced and voluntary tapers.

“I can’t tell you whether the tapers I do in my practice are voluntary or involuntary,” said Dr. Roger Chou, a professor of medicine at Oregon Health & Science University who was one of the co-authors of the controversial CDC opioid prescribing guideline.  “I explain why I think that’s important, that it’s a safety issue, and I guide them through the process. I try to be empathetic, but they don’t want to taper.

“I don’t think there’s anything compassionate about leaving people on drugs that could potentially harm them.”

Oregon Health Official Defends Opioid Plan

By Pat Anson, Editor

The head of Oregon’s Health Authority is defending a controversial plan that would force many of the state’s Medicaid patients off opioids.

In an op/ed this week in the Wall Street Journal, Patrick Allen wrote that patients deserve “safe, effective choices to relieve pain -- not just a pill.” He suggested physical therapy, exercise and massage would be better alternatives.

At issue is a task force recommendation to limit Medicaid coverage of opioids to just 90-days for five broad chronic pain conditions – including fibromyalgia and chronic pain caused by trauma.  Patients already on opioids longer than 90 days would be given one year to taper off the medications and switch to alternative therapies that would be covered by Medicaid.

The plan has drawn criticism nationwide from chronic pain patients, advocates and pain management experts. Drs. Sally Satel and Stefan Kertesz wrote in another WSJ op/ed that the plan would “exacerbate suffering for thousands of patients.”

Allen disagrees, saying opioids are too risky to use long-term.

“This new proposal would expand evidence-based options for chronic pain management, allowing Oregonians to find a care plan that works for them,” Allen wrote.  “Evidence is insufficient to determine the effectiveness of long-term opioid therapy for improving chronic pain and function.

“Offering only one pain-management option that continues to kill Americans at alarming rates is a tragedy we can’t accept.”

According to his LinkedIn profile, Allen does not hold a medical degree and has spent most of his career working in the banking industry and as a state regulator in consumer and business affiars. He was appointed last year as director of the Oregon Health Authority, which operates the state’s Medicaid program and purchases health insurance for over 400,000 public employees and teachers.



Oregon’s Health Evidence Review Commission held a public hearing on the opioid proposal earlier this month, but has not given final approval. If adopted, the opioid restrictions would not go into effect until 2020.

Opioid prescribing in Oregon has been declining for years – as it has nationwide – but the state has the highest rate of non-medical use of prescription opioids in the country. About three Oregonians die every week from an opioid overdose.

Oregon Opioid Plan Would Do 'Substantially More Harm'

By Pat Anson, Editor

A proposed change in Oregon’s Medicaid program would result in the forced tapering of many pain patients off opioid medication and do “substantially more harm than good,” according to a group of pain physicians, academics and patient advocates.

At issue is a recommendation by a task force to limit Oregon Health Plan coverage of opioids to just 90-days for five broad chronic pain conditions – including fibromyalgia and chronic pain caused by trauma.  Medicaid patients with those conditions taking opioids beyond 90 days would lose coverage for the pain relievers and be encouraged to use alternative pain therapies such as yoga, acupuncture and physical therapy, which would be covered under the plan.

“We recently learned of efforts by the Oregon Medicaid Pain Task Force to deny coverage of opioids beyond 90 days for most chronic pain conditions and, effectively, to mandate the taper of current patients receiving opioid therapy. We believe that such efforts risk doing substantially more harm than good,” wrote Kate Nicholson, a civil rights attorney and pain patient, in a letter to Oregon health officials. The letter was co-signed by over a dozen  physicians, academics and advocates.

“An across-the-board denial of opioid therapy for the huge umbrella category of chronic pain is as destructive as is liberally prescribing opioids for all types of chronic pain,” the letter warns. “The denial of coverage to the Medicaid population, in particular, is likely to have a disproportionate impact on individuals with disabilities, on the sickest patients and those with multiple chronic conditions.”

Oregon’s Health Evidence Review Commission will review the proposal at its August 9th meeting. The commission could give final approval as early as October, but the opioid restrictions would not go into effect until 2020, according to the Bend Bulletin.


“Individuals with chronic pain really face debilitating conditions that impact quality of life, yet we’re faced with this significant opioid epidemic where we know there’s a lot of misuse and overprescribing,” Dr. Dana Hargunani, chief medical officer for the Oregon Health Authority, told the Bulletin. “We’re trying to use evidence to guide us, but we really welcome public input into the process. I know it’s a really significant issue for many individuals.” 

Opioid prescribing in Oregon has been declining for years – as it has nationwide – yet the state has “one of the highest rates of prescription opioid abuse in the nation,” according to the Oregon Health Authority. An average of three Oregonians die every week from an opioid overdose. However, many of those deaths involve the “non-medical” use of opioid pain relievers by drug abusers, not patients.

The 2013 National Survey on Drug Use and Health found Oregon to have the highest rate of non-medical use of prescription pain relievers in the country.

“I’m very sad for the people who OD’d,” pain patient Steve Hix told the Bulletin. “But what’s that got to do with me?”

What Grade Should Your State Get for Pain Care?

By Pat Anson, Editor

Millions of Americans who suffer from chronic pain are having trouble finding doctors, obtaining pain medication, and getting health insurance to cover their treatment. So imagine their surprise when a recent study gave passing grades to all 50 states for their pain care policies and said there was “an overall positive policy environment across the nation.”  

“We saw that report and were disgusted. At a time when chronic pain patients across the country are losing their medications and treatments to manage their pain, giving no state a grade below a 'C' is insulting,” said Amanda Korbe, who suffers from Reflex Sympathetic Dystrophy (RSD) and is a founder of Patients Not Addicts, a patient advocacy group.

“Achieving Balance in State Pain Policy” was released over the summer by the Pain and Policy Studies Group at the University of Wisconsin School of Medicine. The report looked at state laws and regulations in 2015 that governed drugs, prescribing and pain care practices.

“This evaluation is meant to identify relevant language in each state’s legislation or regulatory policies that have the potential to influence appropriate treatment of patients with pain, including controlled medication availability,” the study says.

The study gave 13 states an “A” for the quality of their pain care policies:  Alabama, Georgia, Idaho, Iowa, Kansas, Maine, Michigan, Oregon, Rhode Island, Vermont, Virginia, Washington and Wisconsin.

Thirty-one states were given B’s and the rest got C’s. No state was given a failing grade. A complete list of grades for all 50 states and Washington DC can be seen at the end of this story.

“I know that as an Oregon chronic pain patient, I can say my state does not deserve an 'A' right now. We have too many under treated patients, and too many that can't get care at all. For those of us that can't get proper pain management, these high grades are a slap in the face. It invalidates our experiences and struggles to get proper pain management,” said Korbe.

“Would pain management be in such a sorry state if these ‘grades’ actually meant anything? I personally think they are worthless,” said Janice Reynolds, a retired nurse, pain sufferer and patient advocate in Maine, which received an “A” grade.  

Rather than look at state policies and regulations, Reynolds said the study would be more meaningful if it examined whether opioids were being prescribed appropriately, if patients were having a difficult time finding providers, and if untreated pain was leading to more suicides.

“Every state would get a D or F if this was done,” she said.

Study Looked at Pain Policy, Not Practice

“To really look at this comprehensively, it requires a broader analysis to really get an understanding of things,” admits Aaron Gilson, PhD, the lead researcher for the study, which was funded by the American Cancer Society.

Gilson told Pain News Network the study only looked at state policies and regulations as they exist on paper – not how they were being implemented or even if they were effective.

“There’s not necessarily a 100% correlation between policies and practice. The policies in and of themselves don’t create barriers to pain management that we’ve identified. The grade that each state earned is really based on policies that can improve pain management for patients when put into practice,” he said.  

“Sound policy that's not implemented is only words wasted,” says Anne Fuqua, a pain sufferer and patient advocate, whose home state of Alabama was given an “A” grade.

“I'd give Alabama a 'C' for being better than the worst states like Ohio, Kentucky, Tennessee, Florida, West Virginia, Washington, and Oregon.  On paper the policy is excellent and it deserves the 'A' it gets. It just needs to be implemented.”

The study also didn’t look at insurance reimbursement issues or how doctors are responding to federal policies such as the CDC’s opioid prescribing guidelines, which were not released until this year and are having a chilling effect on both patients and doctors.    

Gilson said the methodology used to prepare the next pain care policy report – which was first released in 2000 – probably needs to be updated.

“That’s the first order of business in terms of continuing to do this, to really understand how policies have changed,” Gilson said. “I think it’s really time to examine the criteria that we use to see to what extent we might be missing policy because we’re not looking at the right thing, because barriers are erected in other ways than when we constructed this type of evaluation 16 years ago.”

Patient Survey Underway

One way to better understand those barriers is to simply ask patients what they are experiencing.

“Legitimate patients report the entire move to reduce (opioid) production and restrict prescribing is having a profoundly negative impact on their treatment protocols. Understanding how they are being impacted is important,” says Terri Lewis, PhD, a patient advocate and researcher.

Lewis is conducting a lengthy and detailed 29-question survey of pain patients to see how they are being impacted by efforts to reduce opioid prescribing. To take her online survey, click here.

Lewis will be able to breakdown the data state-by-state to get a real indication of how pain care policies and practices are being implemented.

“We will get that patient voice into this conversation,” she says. “Reports from patients are important and add value to the public conversation.  Reports will be analyzed and compared to months long data collection to look at trends, the impact of increasing restrictions, the fear of physicians to treat patients in this climate, and the influence of other factors like insurance restrictions and red flagging. This is a complex problem.”