Chronic Pain Patients Are Collateral Damage of the Opioid Crisis

By Diana Franklin, Guest Columnist

I have been watching the news a lot lately. It seems like much of the coverage is devoted to the opioid crisis, and rightfully so. But I feel it’s a little one-sided.

I fully understand the issue with illegal drugs, doctors overprescribing, pharmaceutical companies flooding markets with powerful pills, and how all of that is a very big problem. I hate that so many are addicted and something needs to be done to stop it.

However, I also know that there are law abiding citizens in serious, legitimate pain that are getting swept up in the chaos and suffering because of it. These people feel like they're being punished and forgotten about. I know this, because I am one of them.

I had severe scoliosis as a kid. When I was 12, I was told it was progressing so quickly that I could end up bedridden or possibly dead by the age of 21. I had to have surgery to straighten and fuse a large portion of my spine with metal rods. Luckily, the surgery was a success.

When I was in my 30’s, one of the discs that hadn't been fused in my lower back slipped. A doctor did two laminectomies, where they shaved down the back side of the vertebrae. A year later, I had another surgery on the cervical spine in my neck.

These surgeries may have fixed the problem with the discs, but unfortunately the damage was done and I was left with severe nerve damage and in constant pain.

DIANA FRANKLIN

DIANA FRANKLIN

I saw a pain management specialist and tried several different pain medications until I found something that helped. I was still very limited in what I could do, but I was at least able to get out of the house on occasion, though I was unable to work and had to go on disability.

While battling these health issues, I lost my husband and had to find a way to survive with my two sons. This was made even more difficult when my pain started getting worse. I got an MRI which revealed that I also have degenerative disc disease. There is very little space between the few discs in my lower back that aren't fused, meaning that bone is rubbing on bone, crushing the nerves and causing tremendous pain.

With oxycodone, I was still in a great deal of pain, but as long as I didn't get up and do too much, I could push through the day. I always took less than needed and tried hard to manage the pain any other way before I took my pills. I had regular drug tests, per my doctor’s protocol, to ensure that I wasn't taking too much.

I have seen this doctor for 20 years and he always went above and beyond, with all of his patients, to ensure that he only gave them what they need to control their pain without becoming addicted.

Recently, the government stopped allowing my doctor to prescribe any opioids, leaving many of his patients, including myself, without any pain medication at all. Due to the pain and nerve damage, I have trouble walking, my hands and arms will hurt and swell up, and my back feels like it's being crushed. I have severe migraines and often end up crying due to the pain.

I can hardly get up to go across the room without help and every step causes extreme pain. I can't think straight and wind up exhausted because every ounce of energy I have goes to fighting the pain.

Because there is so much damage to my spine, managing the pain is my only real option. The few other options I have aren't covered by insurance and there’s no guarantee that they will help. They could possibly make my situation worse.

My life has gone from enjoying my kids and young grandkids to being essentially trapped in my recliner, not knowing how much longer I can live with the pain.

I have been strongly against illegal drugs all my life. I believe that the government should do what it can to make sure criminals aren't getting their hands on these medications and crackdown on doctors that overprescribe them.

However, by taking pain medication away from everyone, they have made me collateral damage. Patients like me, even those with cancer, are being left without any pain medication at all. Some have committed suicide because they just can't handle the pain.

I am trying hard to fight against thoughts like that, but it is difficult when every moment is spent in excruciating pain. Something has to be done to allow doctors to prescribe pain medicine to those who truly need it, without fear of government prosecution. Put in strict regulations, drug testing and criteria that people have to meet, so that those in legitimate pain can still be given the lifesaving pain relief that they desperately need.

I don't have all the answers, but I know that something needs to be done and we need to be heard. Please, don't sit by as so many suffer. People like me fight our battles every day just to survive, but it gets harder every second that we're in blinding, unthinkable pain.

People talk all the time about the people who die in overdoses. That is indeed a tragedy, but what no one wants to talk about are the people dying simply because they can't cope with the amount of pain that they're in. We need a solution and we need it now! More than anything, we need a loud voice to be heard above all the other shouting that seems to be surrounding this issue.

Please help me get the word out, not just about my story, but so many other stories out there of people in pain. I want as many people as possible, especially lawmakers, to see this and understand what we go through. Please like and share with everyone you can.

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Diana Franklin lives in Texas.

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.

Online Censorship of Health Information Is Authoritarianism

By A. Rahman Ford, PNN columnist

Critics of stem cell therapy have taken their censorship campaign to another frightening and paternalistic step up the authoritarian ladder. Not only does it threaten freedom of speech, freedom of association and freedom of health, but now it’s targeting poor people.

The campaign to stop people from accessing stem cell therapy (SCT) has been building for some time. First there was fearmongering to scare patients away from SCT, followed by a push to have regulatory agencies increase enforcement.  Then came a call for social media platforms like YouTube to censor patient testimonials about the benefits of SCT.

Now, in a disturbing turn, critics are pressuring fundraising platforms like GoFundMe to purge campaigns that seek to raise funds for SCT.

In a recent op/ed in the BBC’s Future, London-based neurologist Dr. Jules Montague argues that crowdfunding sites like GoFundMe need to crackdown on patients seeking to raise money for stem cell treatments. Montague says their testimonials omit the “unfounded hype” and potential risks associated with SCT. These “bad actors,” according to Montague, should be banned to “halt the spread of misinformation.”

To propose that crowdfunding sites be tasked with choosing winners and losers in the marketplace of ideas, and to impose quasi-criminal sanctions on poor patients is to enter a decidedly dictatorial dimension. “Bad actor” is a legal term of art, and should be left to the jurisdiction of a court of law or other legislatively-authorized tribunal. That’s how things work in a democracy.

On the other hand, authoritarian regimes censor whatever speech they see fit, arbitrarily and without explanation. As it pertains to crowdfunding sites, what we absolutely do not need is unelected and unappointed “experts’” selling misplaced fears.

The question that should be asked is why do the SCT critics fear the agency of the people? Is the notion that people can make their own medical decisions – and accept the risks of those decisions – without “expert” stewardship, consultation or approval such a terrifying prospect?

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Ultimately, this “purge and censor” line of argument represents a slippery slope that is distinctly anti-democratic. And at the bottom of the slope, are piled the bodies of the sick, whose desperation is fueled by the abject failures of mainstream medicine.

Equally disturbing is the fact that stem cell censorship on fundraising platforms would be a clear and unmistakable attack on the poor. Poor people are the ones who need to raise money, not the wealthy. The average person doesn’t have the finances of a star athlete like Max Scherzer or a celebrity actress like Selma Blair to get stem cell treatment. Instead, they have to rely on the generosity of others, a generosity that crowdfunding sites facilitate. To censor SCT fundraising is to not only censor a voice, but a livelihood, and maybe even a life itself. Poor people should not be punished for being poor.

Does Dr. Montague really expect GoFundMe and other sites to establish their own internal ethics boards and become the online sentinels of poor people’s health? There is no defensible or rational justification for preventing chronically ill poor people from raising the money they need to save their own lives.

Online Censorship Increasing

Unfortunately, online censorship of alternative health information is not new. In fact, it’s increasing. Facebook recently deleted dozens of alternative health pages without any notice or explanation. Some, such as Natural Cures Not Medicine and Just Natural Medicine, had millions of followers.

GreenMedInfo was kicked off Pinterest for violating its “misinformation policy” which bans “false cures” for chronic illnesses. And who helps Pinterest determine what health advice is false?

“We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email.

Recent changes to Google’s Broad Core Algorithms have also suppressed search results for alternative medical information. As a consequence, hundreds of health websites have experienced drastic drops in traffic, including Pain News Network. One website, owned by alternative health advocate Dr. Joseph Mercola, lost about 99% of its traffic.

“Big Tech has joined the movement, bringing in a global concentration of wealth to eliminate competition and critical voices,” Mercola warned. “This year, we’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

We’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.
— Dr. Joseph Mercola

Even Wikipedia, which relies on open source editing for its content, has succumbed to the “deletionism” of alternative health information.

“We believe that organised skeptic groups are actively targeting Wikipedia articles that promote natural, non-drug therapies with which they disagree,” says the Alliance for Natural Health. “The new trick of these editors is to rewrite or entirely remove pertinent information from such articles or, worse still, delete entire articles altogether.”

It now appears that stem cell therapy is the next hooded subject to be escorted into the Star Chamber of deletionism. The call for fundraising censorship is distinctly ant-human, and denies the most essential and primordial of human instincts – to assist a fellow human being in their time of need.

It is not the place of GoFundMe or any other fundraising site to police people’s medical choices. GoFundMe, your core principles are turning “compassion into action” and the sharing of people’s stories “far and wide.” Please do not capitulate to the SCT bullies.

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A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

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.

Government Grown Cannabis May Be Harming Research Efforts

By Roger Chriss, PNN Columnist

Physician researcher Sue Sisley, MD, has filed suit against the federal government over the quality of cannabis provided for her study on post-traumatic stress disorder. Sisley claims that the cannabis supplied by the DEA-sanctioned facility at the University of Mississippi is “suboptimal.”

Sisley told Green Entrepreneur that the DEA provided "standardized green powder that is just cannabis ground up.” She also said that the plants were moldy and contained sticks and seeds. 

Sisley is not the first researcher to say government cannabis intended for research is not the same as the cannabis available in dispensaries. This of course poses a key question: What is research cannabis?

Cannabis is a plant. Specifically, cannabis is the genus of a plant that includes the species C. sativa, C. indica, and C. ruderalis. There is still dispute if C. ruderalis should be included with C. sativa, or if all three species should be considered a single species, C. sativa. 

There is no precise pharmacological definition of medical cannabis. There is no agreed-upon level of THC, CBD, or other cannabinoids, and no accepted terpene profile. In dispensaries, cannabis comes in a large variety of strains used in a wide range of products. 

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There is poor consistency among strains. Leafly recently attempted to measure the reliability of cannabis strains and found that even the most reliable ones were far from consistent at the levels necessary for clinical research.

Moreover, cannabis is a moving target. Because it is a commercial product often intended for nonmedical use, it is subject to a variety of market forces involving its various psychogenic effects. And new strains are introduced regularly. 

Further, cannabis products are consumed in many different ways, such as smoking, vaporizing, ingesting and through the skin . The bioavailability of cannabis varies significantly by route of consumption because of different absorption levels and metabolism. So whatever research cannabis is used would have to be specified by strain, amount and route of administration. 

For research purposes, that requires precise information. But as Genetic Engineering & Biotechnology News reported, medical cannabis comes in so many forms and has so many different uses that it presents a "unique challenge to cannabis testing laboratories." No existing test provides a good model on how to proceed.

In other words, there is no clear definition of research cannabis and there is no practical way to reliably test commercial strains with a consistency adequate for clinical studies. 

This means the definition of research cannabis is arbitrary. Researchers and advocates keep adjusting the definition or questioning the quality to explain away poor outcomes. According to Microscopes and Machines, when Dr. Sisley's PTSD study concluded, she unblinded the data and quickly came to realize the quality of cannabis provided by the University of Mississippi "had negatively affected the study’s efficacy data.”

But we cannot define research cannabis as the form of cannabis that only gives the results we were hoping for. This would be circular and self-justifying. It would also be self-defeating since we’d never know what, if anything, cannabis has to offer. 

Cannabis is a plant, not a laboratory-synthesized chemical being turned into a USP-grade pharmaceutical. As Jonathan Stea wrote in Scientific American,“it is best to conceptualize cannabis as a chemical soup with over 500 ingredients that can be served in countless different ways.”

This means that researchers will need to define their cannabis before starting a study. And the U.S. government will need to provide such cannabis. Fortunately, the National Institutes of Health is responding by producing more varieties of cannabis.

A more favorable legal landscape would also help. There may not be any “research cannabis” per se, but cannabis is certainly worth researching. 

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Don’t Add to My Pain

By Mia Maysack, PNN Columnist

This month I celebrate the anniversary of finally getting a fibromyalgia diagnosis, after years of fighting to “earn” it. To my lifelong course of chronic migraine was added a heaping side dish of a nerve disorder.

Intractable pain is a constant state of being for me, whether I use essential oils, think positive, drink pickle juice for 40 days and nights, or even if someone belittles, disbelieves, mocks or minimizes it.    

People often say things like "I wouldn't be able to make it” if their head hurt like mine does every day. For many, there's no possible way to imagine what it is like, but I'm finding that those who cannot relate at all often have the most opinions about it.

Others wonder how I've been able to accomplish what I have while under the persistent weight of brain discomfort. The answer is simple: Because I've had no other choice!

When not entirely incapacitated, head pain for me has been managed with a grateful attitude and a mind over matter approach. Unfortunately, when navigating matters of the physical body, more restrictions apply.  Neither deep breaths nor the tapping of my ruby red slippers will get me up or down the stairs when I'm unable to walk. 

Many around me have taken all of this personally, because the extent of the hardships I face have left me trapped behind closed doors more than ever. 

Instead of stopping by or reaching out to check in, entire relationships have changed -- primarily because my ailments have yet to be acknowledged, let alone respected.

Only recently did others finally begin to grasp the concept of my migraine and cluster headaches.

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But wrapping their minds around something else? Especially when I lack the energy and desire to continually attempt to justify or explain? Forget about it. 

One thing about me is that I rarely ever complain. I'm known to seek out silver linings and hand the light I find over to the next person in need. I count my blessings on a regular basis and never lose sight as to how much worse things could be or how they can change in the blink of an eye.

So, when attempting to bare my soul while being met with judgment, doubt, questioning or just flat out disregarded, I wonder if those who respond that way ever stop to reflect. Shifting blame toward me or my conditions for our lack of fellowship or communication doesn’t help the relationship.   

Not long ago I was out at a dinner, constantly having to shift in the chair or get up to stand, while repeatedly being reminded what we're conversing about due to brain fog. All the while my head is banging and I can barely eat because the nausea from attempting to ignore everything else was heightening.   

The dear one I'm out with mentions another friend who endures similar circumstances. He proceeds to explain how he's had to carry this person out of places and into their home due to the extent of their fatigue. Hearing this tears me up because I can literally feel for them.  

But instead of using this opportunity to bond, my emotion was met with ridicule: "You are SO sensitive! I cannot talk about ANYTHING with you!"  

It felt like insult to injury, that they'd demonstrate compassion for another but then put me down.   

Before that, someone else I love labeled my chronic pain as a "placebo effect." More recently, even after discussing my disability hearing, a friend wondered if I had a gym membership because they didn’t want to work out alone.  

Not that it is blasphemous to bring up the topic of exercise, but it showed a lack of empathy. If I am in need of using a cane, not always able to drive, experience muscle failure and soreness to the touch, what about that signifies my readiness to lift weights or hop on a treadmill?

I used to go out dancing regularly, but the last time was about 24 months ago for an ex co-worker's bachelorette party -- whose actual wedding I ended up missing because of all this. Another homie of mine hasn't replied to me since I'd been forced to cancel attending her kid’s birthday party at the last minute.  

Quite honestly, if I keep in contact with just about anyone, it's because I initiate the connection. Many have flat out stopped talking to me altogether because my consistent need for self-care is an inconvenience for them.  

What they don't know is that all of this is so real. The other day, I purposefully went outside in the rain to pre-shower, because with Mother Nature's help the chore felt slightly less daunting. 

Having been dealt this hand and then being left to cope on your own has a way of demonstrating the extent of one’s strength they may not have realized they had. I am thankful for everything that broke me because that’s what I am made of.

I now declare unapologetically that all of this has forced me to change. Nothing is welcome in my life that adds more hurt or disrupts my peace. My hope is that everyone reading this reaches the same conclusion and thereby a level of freedom.    

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

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.

Are You Mad as Hell Yet?

By Fred Brown, Guest Columnist

I experienced in mid-life something that I wish on no one. Because of this event, I live with a disease called chronic pain.  I am considered a “pain patient” by the medical community, but I try not to see myself as such. I am a human being, living my life to the best of my ability.

I had several surgeries to fix a problem in my spine.  These procedures not only failed to fix the problem, they left me with severe and chronic intractable pain.

There is a way to relieve my pain and make me more functional, and it has been part of my life for over two decades: Opioid pain medication prescribed by a board-certified pain management physician.

Opioids give me quality of life and let me be a spouse, father, grandfather and great-grandfather.

The problem I have is that there are people in state and federal agencies, along with legislators in our government, who think they know better than my trained doctor. These officials make claims without any science to back them up. They don’t want me to take opioids or say I should only use them at very low doses that do not work.

FRED BROWN

FRED BROWN

There are millions of legitimate chronic pain patients like me who need these drugs. They are essentially being told, “Sorry, we do not want your physician to treat you the way they know best. And if you don’t do what we think is best for you, we can do nasty things to you and your doctor.”

These officials can use state and federal powers to take away your physician’s license to practice medicine. And if that is not enough, they can even put them in jail.  The government is persecuting doctors for legitimately prescribing opioids for chronic pain.

There is strong evidence -- using our own government's information -- to prove physicians have not caused the crisis. The writing of opioid prescriptions has been coming down for several years. What has been increasing are patients turning to street drugs or, even worse. committing suicide. They are not able to obtain relief the right way, so they go to the streets!

There has been so much disinformation about opioid medication that our media has distributed to the public.   Over and over, we hear that physicians have overprescribed opioids and caused the “opioid crisis.”

Over 40 years ago, there was a motion picture made called “Network.”  In the movie, there is a fantastic scene where an anchorman named Howard Beale becomes so frustrated and angry during a show that he shouts over and over, “I’m as mad as hell, and I’m not going to take this anymore!”

Then he encourages Americans across the country to open their windows and do the same. Millions do.

To my fellow patients, advocates, friends, doctors and other healthcare workers. It is time to write, call and communicate with your Senator and Congressmen.

Like Howard Beale, tell them you’re mad as hell and you’re not going to take it anymore.   

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Fred Brown lives with degenerative disc disease, bone spurs, stenosis and other spinal problems. He is a patient advocate and volunteer with The Alliance for the Treatment of Intractable Pain (ATIP). 

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.

Are Rx Opioids Scapegoats for the Opioid Crisis?

By Dr. Lynn Webster, PNN Columnist

The Washington Post recently published a series of stories about the volume of opioid medication distributed over the past several years in the United States. Over 76 billion pills were distributed from 2002 through 2012.

That sounds like a huge amount, but it is difficult to know what the number means. What is clear is that the stories are meant to suggest the number of pills is excessive and responsible for the rise in opioid overdose deaths. 

This presumed correlation is one reason for the recent lawsuits that have been filed against opioid manufacturers and distributors. It has also spawned policies that appear to have worsened, not prevented, overdoses.

Though the situation has been framed largely as a prescribing problem, the reasons for the drug crisis are many. While overprescribing has certainly been a factor, it is probably less important than other factors, such as joblessness, homelessness and despair, which are more challenging to address.

Let’s look at the data about the relationship between opioid prescriptions and overdose death rates. The number of opioid prescriptions in the United States peaked in 2012 and began a steady decline. By 2017, they reached a 15-year low.

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Despite the decline in the number of opioids prescribed, overdoses from all opioids – both legal and illegal -- continued to increase. Overdoses involving prescription opioids represent only about 25% of the total number of drug overdoses.  

Obviously, something more than the supply of prescription opioids is driving overdoses higher.

No Correlation Between Opioid Prescriptions and Overdoses

After winning a year-long court battle with the Justice Department, the Post and HD Media, publisher of the Charleston Gazette-Mail in West Virginia, were able to access data from the DEA’s Automation of Reports and Consolidated Orders System (ARCOS).

The information in the database shows that, between 2006 and 2012, West Virginia received the largest per capita amount of prescription opioids. The state also experienced the highest opioid-related death rate during that period. Is there a correlation?

Kentucky also had a high number of pills and a high death rate, but as Jacob Sullum recently reported in Reason, Kentucky’s death rate in 2017 was actually lower than Maryland’s and Utah’s, where prescription rates are substantially lower. He also pointed out that although Oregon’s prescription rate was among the highest in the country, the rate of deaths involving pain pills in Oregon was just 3.5 per 100,000, lower than the rates in most states. 

Sullum further showed that Kentucky, Nevada, Oklahoma, Oregon, South Carolina and Tennessee were among the 10 states with the highest per capita prescribed pills during the 2006-2012 period. But they were not the states with the highest overdose rates. 

In a separate analysis, the CDC and Agency for Healthcare Research Quality found no correlation -- not even a weak one -- between opioid prescribing rates and overdoses when comparing data from each state. 

In addition, the rate of opioid prescribing is highest nationally for people 55 years and older, but that age group has the lowest rate.  

This lack of correlation between opioid overdoses and the volume of prescribed opioids is consistent internationally. In 2016, England prescribed the most opioids and saw the most overdose deaths in its history. However, the drug responsible for many of those deaths was heroin, not prescription opioids. 

There is a raging opioid crisis in West Africa where, despite a low prescription rate, the number of overdoses has surged

In 2018, Scotland's drug overdose rate exceeded that of the United States -- largely because of heroin. There is no evidence of an overall increase in opioid prescribing in Scotland. 

No Simple Answers to the Opioid Crisis

It is clear that the data does not support a simple answer to the opioid crisis. Focusing all of our efforts on decreasing the supply of prescriptions will not solve the problem and is already creating unintended consequences.

In fact, cocaine and methamphetamine were involved in more overdose deaths in the U.S. in 2018 than prescription opioids. As the supply of prescription opioids has decreased due to the policies of the last few years, people have moved from prescription opioids to other illicit drugs.

The solution to the opioid crisis must be multi-pronged. Overprescribing played a role in causing the crisis, but sociological factors appear to have driven the demand. We must consider what prompts people to turn to drugs in despair. A recent study published in SSM-Population shows job loss bears a significant correlation to opioid-caused deaths.

In addition, in the Proceedings of the National Academy of Sciences, Princeton University economists Anne Case and Angus Deaton (recipient of the 2015 Nobel prize in economics) showed mortality from substance use was linked to declining economic opportunity and financial insecurity.

Solving the drug crisis will not be easy. However, the disenfranchised members of our most impoverished communities deserve viable solutions to their problems. It is crucial to understand the degree to which job loss and hopelessness contribute to the drug problem.

Reputable data proves that the volume of opioids prescribed is not solely, or even primarily, responsible for the opioid crisis. Let’s focus on what is responsible.

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.”

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.

Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

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Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.  

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.