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

AMANDA SIEBE

AMANDA SIEBE

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.

IMAGE BY NATALIE BEHRING

IMAGE BY NATALIE BEHRING

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. 

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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.

Disabled by the War on Opioids

By Michael Emelio, Guest Columnist

I am 53 years old and have severe disc degeneration spread throughout my spine and scoliosis in my lower back. As if that weren't enough, I've also been diagnosed with fibromyalgia.

I have been on opioid medication since 2001.  For over a decade the meds helped reduce the pain enough so that I could still work 40 hours a week, including some heavy lifting. But in 2013 the DEA shutdown the doctor I had been with for over 12 years, forcing me to find a new pain management doctor.

The new doctor not only refused to continue the meds that were working for me, but immediately cut my opioids by over 90% without tapering me down at all. My pain increased so much that I couldn't return to work, even for light duty.

When I asked the doctor why he wouldn't continue the prescriptions my previous doctor was giving me, he said and I quote, “Because of the crackdown on pain meds you're not going to find a doctor in this state will give you more than what I'm giving you now." 

Mind you, this was back in 2014, and was still less than the maximum 90mg morphine equivalent dose that the CDC started recommending in 2016. 

Little did I know that was only the beginning of my nightmare. Since back surgery wasn't an option, the doctor told me my only choice was to have epidural steroid injections.

MICHAEL EMELIO

MICHAEL EMELIO

I did some research and had legitimate reservations about the injections, but without being offered any other options and not wanting to be labeled a drug seeker, I reluctantly agreed. I couldn't afford to be out of work much longer.

The injections were administered a month apart. The first series did nothing for my pain and the second one actually increased the pain by over three-fold. This resulted in me becoming completely bedridden 24 hours a day and struggling to complete the most basic daily life functions. I'm not talking about doing laundry and cleaning house. I'm talking about just feeding myself.

This left me unable to do any kind of work whatsoever, let alone return to my regular job of over 7 years, where I was working towards retirement. When I asked the doctor what was I supposed to do now, his response was, “Have you considered applying for disability?"

Unless you've been here, you cannot fathom the level of shock and horror that I felt at that moment, yet alone the level of injustice and outrage. A word that comes to mind is appalled, but that doesn't even begin to describe it. I went from being an able-bodied worker to disabled and bedridden 24 hours a day.  And for no other reason than the War on Opioids!

To be perfectly clear, I didn't take illegal drugs and I never abused, gave away or sold my prescriptions. I passed all my drug tests, never had a record of drug problems, or even a DUI. I didn't even drink alcohol. I did NOTHING to give them any reason whatsoever to take my medications away.

My current doctor is currently weaning me off the last of my opioids, stripping me of the last tiny bit of medication that have any effect on my pain. What little quality of life I have left is about to be taken away completely.

The only thing I can do now is pray that I am able to hold on and not become another suicide statistic after being forced to live in agony day-in and day-out. All because of the barbarically handled, totally blind, and uncompassionate War on Opioids.

Don't get me wrong. I'm not against fighting drug abuse and addiction, I'm just against the way it's being fought. Taking these medications away from people who have proven they need and use them responsibly will fail to have any impact whatsoever on the addicts who are abusing them.  It only serves to punish the honest and innocent. Why should I be punished and forced to live a life of pain, misery and indignity when I have done nothing wrong?

With the help of opioids, I was still very active and happy, enjoying things like riding motorcycles, jet skiing, and even paragliding. Although recently becoming single, I had no reason not to hope for eventually finding the right woman and living happily ever after.

But I've been robbed of all of that now. I am bedridden and struggling to survive on nothing more than disability income. My pain has tripled thanks to the unnecessary and unwanted steroid injections, and for no other reason than the fear instilled in my doctor by the DEA and CDC.

And it's still not over. The only thing my doctor is offering now is more of the very same injections that put me here in the first place and robbed me of my life.

What keeps me fighting is the sheer anger and outrage that I have for the injustice of it all. If you are a doctor, DEA agent, politician, or anybody else who is not a chronic pain patient – then take a minute to realize that you are only one car accident, one slip, or one fall away from this happening to you.

STOP THIS MADNESS!

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Michael Emelio lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

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

Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

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Debbie Duke lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

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