The Addict is Not Our Enemy

By Fred Kaeser, Guest Columnist

A number of people in chronic pain support the plight of those with addiction. Yet, over the past year and a half, I have read any number of derogatory statements and comments here on Pain News Network and on its corresponding Facebook page about people who are dealing and struggling with addiction.

Even a cursory review of the comment section on different articles will reveal rather quickly any number of folks who are dismissive of those dealing with addiction. Some express a real hatred.

One person actually suggested letting “all the druggies overdose, one by one.”

Another laments that “addicts can't die quick enough for me.”

Some express a sort of jealousy over addicts getting better treatment than they: “It's good to be an addict" and "Maybe I'd be better off being an addict.”

And then there are those who got all shook up over Prince's overdose, not so much from his death, but because it was linked to an opioid and that it might make it harder for them to obtain their own opioid medications.

And to think these comments come from the same people who beg others to better understand and accept their own need for better pain care!

It wasn't very long ago that the "drug addict" was scorned and forgotten: the druggie on the dark-lit street corner or the drunk in the back-alley. Pretty much neglected and left to fend for themselves.

But that started to change in the '70s and '80s, and nowadays the person suffering from addiction is recognized as someone who suffers from a very complex disease, is quite sick, and struggles to access the necessary care in order to recover. Societal attitudes towards those with an addiction now reflect empathy and a desire to help, as opposed to denunciation and dismissiveness.

We chronic pain patients are looking for the same acceptance and understanding that addicts were desperately seeking just a few short years ago. And that struggle took many, many decades, one might say centuries, to achieve. Our struggle is similar, and my guess is if we keep our eyes and focus on reasonable and rational argument, we too will achieve success in our struggle to obtain acceptable pain care and understanding.

But if some of us continue to see the enemy as the person who has an addiction, our fight for justice will suffer and be delayed.

Why? Because the addict is not very different from us.  Irrespective of the reason why a drug or substance user becomes addicted, the addict just wants to feel better, just like us. The addict is sick, just like us. The addict wants relief from pain, just like us. Perhaps not from physical pain, but emotional and psychic pain. The addict wants proper medication, just like us. The addict needs help and assistance, just like us.

And sometimes the pain patient is the addict. Sometimes we are one in the same. A recent review of 38 research reports pegs the addiction rate among chronic pain patients at 10 percent. From a genetic predisposition standpoint, we must presume that some addicts have become addicted just because of their genes, just like some of us.

No one with an addiction started out wanting to become addicted, just like none of us wanted chronic pain. And while our government is trying to figure out how to minimize the spread of opioid addiction, it is not the addict's fault as to how it has decided to that.

In many ways those suffering from addiction are not very different from us who suffer from chronic pain. We both struggle for acceptance, we both require empathy and understanding from the world around us, and we both require treatment and proper care to lead better and more productive lives.

But, I firmly believe that as long as there are those of us in chronic pain who feel compelled to ridicule and demean those who are addicted, that we will only delay our own quest to receive the empathy we so justly deserve in our journey towards adequate pain care.

Empathy breeds empathy, and if we expect it for ourselves, we must be willing to extend it to others. And that includes the addict. 

Fred Kaeser, Ed.D, is the former Director of Health for the NYC Public Schools. He suffers from osteoarthritis, stenosis, spondylosis and other chronic spinal problems.

Fred taught at New York University and is the author of What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents.

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.

How to Give Back on #GivingTuesday

Pat Anson, Editor

Most of us know all about Black Friday – the annual post-Thanksgiving shopping frenzy – that marks the day many retailers finally begin to turn a profit for the year. There’s also Small Business Saturday and Cyber Monday – also aimed at getting us to shop, shop, and shop some more.

But are you ready for Giving Tuesday on November 29?

That’s the day that kicks off the charitable giving season, when many people begin to focus on their holiday and year-end donations to charity. Now in its fifth year, #GivingTuesday relies primarily on social media (note the Twitter hashtag) to spread the word about giving and philanthropy – as opposed to the constant drumbeat about holiday shopping.

This year Pain News Network is partnering with other non-profits, civic organizations and charities to promote #GivingTuesday and other small acts of kindness.

I know kindness is something that pain sufferers could use more of. Many of you are no longer able to obtain pain medication or have seen your doses cutback.  Others are struggling to find new doctors and treatments, or pay rising insurance premiums and deductibles. It’s been a difficult year, and there’s a lot of uncertainty about what 2017 will bring to the pain community when a new administration takes office.

Whatever happens, I want you to know that Pain News Network will be there to cover it and keep you informed. So far this year, we’ve reached well over a million people around the world with PNN's unique blend of news, investigative reporting and commentary on issues affecting the pain community. We provide an independent voice – and go out of our way to include the patient perspective -- which you just don’t see in the mainstream media. This reader-supported journalism is only possible through donations from people like you.  

Please consider a donation to PNN today by clicking here. We’ve partnered with PayPal to provide a safe and secure environment for donations by credit or debit card.

If you prefer donating to another pain organization or advocacy group, please consider one of our affiliates – a list of which can be found by clicking here.  Non-profits such as For Grace and the International Pain Foundation do a remarkable job spreading awareness about chronic pain and are deserving of your support.

If you prefer an organization in your own community, #GivingTuesday has a web page that can help you connect with a local non-profit or school near you. If money is an issue, many charities are in need of volunteers willing to donate their time, goods or services.

As the name implies, #GivingTuesday is all about “giving back.”

How will you give back this Tuesday? 

Wear, Tear & Care: Needling Away Pain

By Jennifer Kain Kilgore, Columnist

One would think that encouraging inflammation is a bad idea, right?

“Let’s stick you with needles, inject a dextrose solution, and create some new tissue. It’ll be great!”

That’s what my dad has been saying since 2004. He had prolotherapy done for his low back in college, and it did wonders for him. I was extremely dubious. It sounded far too strange – injecting a sugar solution? Into my neck?

I have very extensive injuries from two separate car accidents. To sum it up quickly, I have badly-healed thoracic fractures, bulging lumbar discs hitting nerves, and two cervical fusions that cause a lot of post-surgical pain. The idea of purposefully creating more inflammation sounded insane. But after my second fusion, when the pain started increasing no matter how dutifully it was treated, I decided to give it a try.

Prolotherapy, or sclerosing injections, is still considered a bit radical, even though it’s been around since the 1930’s. The reason for the mystery is because there haven’t been enough double-blind studies conducted yet.

It’s a non-surgical ligament and tendon reconstruction injection designed to stimulate the body’s natural healing processes. By creating inflammation, you prod the body to create new collagen tissue and help weak connective tissue become stronger.

Because I live in the Boston area, that meant the drive to the doctor’s office was an hour each way. Most people do each area (lumbar, thoracic, cervical) separately, and each area takes approximately five rounds of shots. For me, that would’ve meant an eternity of needles.

I chose the insane route: five weeks of intense pain, meaning five weeks of all three areas at the same time.

It’s not supposed to hurt that much – people can take an aspirin and go to work after the appointment, grumbling about their aching knee. My pain response has become far more sensitive in my back and neck since the accidents, so what’s like a bee sting for other people is like thick surgical needles for me.

As such, it was hellishly difficult. Each appointment was on a Wednesday and took about fifteen minutes. The doctor injected my low back and then let me rest with an ice pack down the back of my pants. Then he injected my neck, loading me with more ice packs. Then, very gingerly, he approached the mid-back, which was the most damaged of all. He had to consult my MRIs for that one because the bones are not quite where they’re supposed to be.

For me, it took about an hour for the real pain to kick in, which gave me just enough time to drive home. The doctor numbed me with a topical anesthetic as well, so I sat on five ice packs and made the drive back to my house, where I collected all the ice packs in the freezer and arranged them on the recliner. Then I wouldn’t move for about two days. Sleeping was almost impossible without ice packs stuffed into my pajamas; I still can’t sleep on my back, two months later. Sitting like a normal human being was out of the question.

For five weeks, I spent the two or three days after shots recovering from absurd amounts of pain, and then by the time I’d recovered, it was almost time for the next round. My level of pain was far more than what other people online have reported. I also did a lot more shots at once than other people do. My experience was very much abnormal. But, most importantly: Did it work?

Well, yes. It did. Amazingly so. I’d told myself at the beginning that if this procedure controlled even 25 percent of the pain, that would be worth it. That would be worth the driving, the pain, and the out-of-pocket cost that isn’t covered by insurance.

My cervical fusions caused my arms not to work a lot of the time. Typing, writing, and using my hands for general tasks was very difficult and tiring. Additionally, my shoulder blades had what felt like black holes filled with electric fire. Nothing helped it. Nothing worked.

Two weeks into the prolotherapy regimen, my arms were fine and the black holes had disappeared.

I still have a lot of my daily low-grade, all-body pain. I still have massive headaches and neck pain. But my sciatica is also better, I’ve noticed – I was able to go to a rock park called Purgatory Chasm and clamber all over humongous boulders, and afterward I was only sore, not in agony.

So do I think it works? Absolutely. The other great part is that it’s supposed to last for at least a few years. Steroid injections only last a few months. I very much prefer this schedule.

If you can get past the “alternative therapy” label and can scrounge up the money to pay for it, I’d highly recommend prolotherapy. It worked for me, and I’m still waiting to see more of its effects. I hope that it works as well for you.

Jennifer Kain Kilgore is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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 I'm Thankful to Be Alive

By Crystal Lindell, Columnist

There were lots of times over the last year where I was not at all thankful to be alive. Where just the idea of being alive made me want to die.

Like that time almost exactly a year ago now when I was sitting on the toilet, sweating, with my elbows on my knees and my face in my hands, barely about to endure the physical withdrawal of morphine that I was going through.

I would have given anything to die right in that moment.

And there was the time back in the spring when I had a really bad reaction to a medication called Buspar (buspirone) that led to a days-long anxiety attack and the most vivid suicidal thoughts I’ve ever experienced.

I really wanted to die then as well.

But despite my pleas, I did not get to die. I kept living. And now, this year on Thanksgiving, I have the perspective to see why that’s a good thing.

Because during the past 12 months I’ve also gotten to go to Ecuador and France for work. I’ve met my friend’s new baby and watched her toddler learn to walk. I saw my sister’s basketball team win a state championship, dyed my hair blue, and had the best escargot and creme brulee in a French town just 30 minutes from the German border.

I got a promotion at work, and saw the sunset from the top of the Eiffel Tower. I saw the impossible become possible when the Cubs won the World Series, and I ate seafood while overlooking an infinity pool in Guayaquil, Ecuador.

There so many good things I would have missed. 

The episode with the Buspar was especially traumatizing. I had started taking it because of the intense, daily anxiety I was having after going off opioids. But I was one of the rare people who had an inverse reaction to it, leading to unbearable anxiety and suicidal ideation.

If you have never had a medication cause suicidal ideation, the best way to describe it is that your inner voice suddenly changes. And all you can think is, “Just do it. Just kill yourself. Nobody would miss you anyway. You don’t have to be in pain anymore. Your heart doesn’t have to break anymore. Just do it.”

I was wearing my favorite blue dress that day, and I can’t even look at it now without flashing back to the moment I had locked myself in the bathroom stall at work and decided to take all the pills in my purse.

Suicide isn’t very logical, so on some level it makes sense that I didn’t really come up with a logical reason to not do it. In the moment, I wasn’t able to convince myself that there were better days ahead or that anyone would miss me.

In the end, what stopped me was the very thing that has saved me so many times: My writing. I realized that if I killed myself in that moment I wouldn’t be leaving behind a suicide note. And I couldn’t very well die without a goodbye letter. So I stopped what I was doing, and found the strength in my wobbly legs to get myself out to my car and drive home.

Looking back and knowing how serious it was, I realize now that I should have gone the ER right then, but it would be days before I went in for a psych evaluation. In the meantime, I took lots of deep breaths and a hot bath and convinced myself to give this whole life thing a go again the next day.

That happened on May 17, and not a month goes by where I don’t mark that day. Where I don’t give myself permission to be a little more loving to my soul than I usually am. And where I don’t think back about all the things I could have so easily missed.

It’s been a long year, and most of what I’ve endured can be traced back to my physical pain and my attempts to break free from opioids. I did not see any of it coming, and was woefully unprepared to endure it.

But endure it I did. And it turns out, there were so many lights at the end of the tunnel. So many things I would have missed.

If you’re struggling, please don’t hesitate to get professional help. I promise, with my whole heart, there are so many lights at the end of your tunnel too.

For help, call the National Suicide Prevention Lifeline, 800-273-8255.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Pain Companion: How to Survive the Holidays

By Sarah Anne Shockley, Columnist

The holiday season is upon us. For many it’s a time meant for joyful festivities, but for those of us in chronic pain, planning and participating in gatherings with coworkers, friends and family can pose significant challenges and stresses.
 
The demands on our energy, time and patience are likely going to become much higher than normal, and we’ll need to make wise choices about what we can and can’t do.

How do we find ways to participate enjoyably and not send our pain levels skyrocketing?

You Don't Have To Do It All

Learn to say no. Nicely, kindly, but firmly.

You don't have to be the person you were before you were struggling with pain, and you shouldn't try to be.

Yes, people have expectations of you and they forget that you're in pain. It's no fun, but you're going to have to gently remind others that you can't be everywhere and do everything they expect of you this holiday season.

Tell them that it's also hard on you, not be able to be as involved as you have been in the past, but that it is very necessary for your healing.

Let them know that the best way they can support your healing is to allow you to make the choices you need to make -- the choices that may keep you home a little more and out a little (or a lot) less often.

Give yourself permission to ask others to do more than usual so you can attend gatherings without wearing yourself out, and give yourself permission to stay home if you need to.

Let coworkers, friends, and family know that it's nothing personal about them. It's personal about you. You're taking care of yourself.

Give Yourself a Free Pass

Give yourself a free pass to say yes or no at the last minute, and decide you’re going to be okay with that. That means that you're going to reply with a firm "maybe" when you're invited anywhere. It means that you can leave the decision about whether you're up for something or not right up to the moment you're heading out the door. And it means preparing others to accept that.

Tell friends and family that you may need to cancel your attendance at the last minute, or that you may need to leave early, and ask for their understanding ahead of time. Let them know that you really want to be able to be with them, and your absence has nothing to do with how much you care about them. It has everything to do with taking care of yourself.

Then do what you need to do in that regard, and do it without guilt. Your priority is to find a way to take care of your need for rest and low stress, even in the midst of this demanding season.

Don't Cut Yourself Off

With that said, don't completely cut yourself off from friends and family either. Being with loved ones for special occasions can be one of the most joyful aspects of being alive, so you don't want to miss out entirely if you can help it.

So, here's my formula: Choose a small number, say 3 to 5 celebrations for the wholeholiday season that you feel are the most important to you personally. I don't mean the ones you used to think were important based on obligations to work, family and friends. I mean the ones you truly enjoy, the ones that feed your spirit, the ones you would really miss if you couldn't go.

If at all possible, find a way to get to those and only those. Go for only a brief period, if need be. Attend without contributing to food or preparations. Again, give yourself a guilt-free pass.

Let yourself have the times that are important to YOU, and say no to the rest.

This may sound selfish, but if you're in pain, you need to be a little more selfish. It isn't doing anyone any good for you to wear yourself out trying to do everything you used to do and go everywhere you used to go, if you will be raising your pain levels and not enjoying yourself.

So, instead of being exhausted and grumpy at too many functions, pick a few choice ones you can attend with enjoyment. Above all, be kind to yourself and take care of yourself first.

Find an Ally

Recruit a holiday ally -- a friend or family member who understands your situation -- who will do the explaining for you, drive you over to functions, pick up the slack in terms of bringing food or making arrangements, and agree to leave early with you if it's necessary.

You might find someone for the whole season or you might want to ask a different person for each function. Remind yourself: You need more help. You need to do less.

Don’t hide away this holiday season if you can help it, but also give yourself the gift of attending fewer functions, say yes only to the ones you really enjoy, find an ally or two who will support you, and giving yourself a free pass to say no so that you can fully enjoy the celebrations you do attend.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

Medical Marijuana Could Help Treat Addiction

By Pat Anson, Editor

Can marijuana be used to treat addiction?

Not according to the U.S. Drug Enforcement Administration, which classifies marijuana as a Schedule I controlled substance with “a high potential for abuse.” Adults who start using marijuana at a young age, according to the DEA,  are five times more likely to become dependent on narcotic painkillers, heroin and other drugs.

But a new study by Canadian researchers found that marijuana is helping some alcoholics and opioid addicts kick their habits.

"Research suggests that people may be using cannabis as an exit drug to reduce the use of substances that are potentially more harmful, such as opioid pain medication," says the study's lead investigator Zach Walsh, an associate professor of psychology at the University of British Columbia’s Okanagan campus.

“In contrast to the proposition that cannabis may serve as a gateway (drug) is an emerging stream of research which suggests that cannabis may serve as an exit drug, with the potential to facilitate reductions in the use of other substances. According to this perspective, cannabis serves a harm-reducing role by substituting for potentially more dangerous substances such as alcohol and opiates.”

In their review of 31 studies involving nearly 24,000 cannabis users, Walsh and his colleagues also found evidence that marijuana was being used to help with mental health problems, such as depression, post-traumatic stress disorder (PTSD) and social anxiety.

The review did not find that cannabis was a good treatment for bipolar disorder and psychosis.

"It appears that patients and others who have advocated for cannabis as a tool for harm reduction and mental health have some valid points," Walsh said.

With medical marijuana legal in over half of the United States and legalization possible as early as next year in Canada, Walsh says it is important for mental health professionals to better understand the risk and benefits of cannabis use.

"There is not currently a lot of clear guidance on how mental health professionals can best work with people who are using cannabis for medical purposes," says Walsh. "With the end of prohibition, telling people to simply stop using may no longer be as feasible an option. Knowing how to consider cannabis in the treatment equation will become a necessity."

The study was recently published in the journal Clinical Psychology Review. Walsh and some of his colleagues disclosed that they work as consultants and investigators for companies that produce medical marijuana.

Previous studies have found that use of opioid medication declines dramatically when pain patients use medical marijuana. Opioid overdoses also declined in states where medical marijuana was legalized..

‘Spicy’ Injection Could Take Sting Out of Foot Pain

By Pat Anson, Editor

The U.S. Food and Drug Administration has given "fast track" designation to an injectable pain reliever containing a synthetic form of capsaicin, the active ingredient that makes chili peppers spicy.

The move speeds the development of CNTX-4975 as a treatment for Morton’s neuroma, a painful nerve disorder of the foot. If clinical trials are successful and CNTX-4975 gains full FDA approval, it would be the first use of capsaicin in an injectable analgesic. Capsaicin is already used in skin patches and topical ointments for temporary pain relief.

“We feel the Fast Track designation is recognition that we are pursuing an unmet need for a serious condition with a novel therapy. CNTX-4975 has the potential to help patients avoid surgery, meaning they can avoid the potential complications and recovery associated with surgery, while still achieving the pain relief they are seeking,” said Jim Campbell, MD., founder and President of Centrexion Therapeutics, which is developing the drug.

“We also believe the FDA is trying to encourage development of novel therapies, like CNTX-4975. As a non-opioid, we believe CNTX-4975 could have a major impact in the treatment of chronic pain.”

Centrexion is also studying CNTX-4975 as a possible treatment for osteoarthritis in both humans and dogs.

Morton’s neuroma involves a thickening of the tissue around a nerve leading to the toes, which causes sharp, burning pain in the foot, especially when walking.

The current standard of treatment is steroid injections or surgery to remove the nerve. The surgery often results in permanent numbness in the toes and a potentially long recovery period. 

There are currently no FDA-approved treatments for Morton's neuroma. The agency’s Fast Track process is designed to speed the review of drugs to fill an unmet medical need.

“CNTX-4975 has the potential to provide a high degree and long duration of pain relief without having to undergo surgery. Additionally, CNTX-4975 is highly selective for the capsaicin receptor, which allows it to selectively inactive the local pain fibers while leaving the rest of the nerve fiber functioning, meaning the patient won’t experience numbness in the area of the injection,” said Campbell in an email to PNN.

CNTX-4975 has a short half-life and is cleared from the body within 24 hours, but Campbell says a single injection provides pain relief that lasts for months.

A recent Phase 2b study of CNTX-4975 showed a statistically significant decrease in pain from Morton’s neuroma over a 12-week period. Centrexion plans to begin a Phase 3 trial in 2017.

The company is expecting results later this year on a Phase 2b trial of CNTX-4975 as a treatment for knee osteoarthritis in humans, as well as a study on pet dogs with canine osteoarthritis.

A recent study found that a skin patch containing capsaicin works better than Lyrica (pregabalin) in treating patients with neuropathic pain. Over half the patients using Qutenza had pain relief after about a week, compared to 36 days for those taking pregabalin.  

Lady Gaga Turns Up the Heat to Fight Chronic Pain

By Pat Anson, Editor

Lady Gaga is well known for her unconventional approach to singing, fashion and just about everything else.

So it’s not altogether surprising that the 30-year old entertainer has some unusual remedies for chronic pain -- including infrared saunas, ice baths, emergency blankets and frozen peas.  

Lada Gaga recently shared on Instagram details about her “frustrating” battle with chronic pain, along with two photos of herself getting treatment.

The first photo, posted Thursday, shows a hand apparently massaging Lady Gaga’s shoulder, along with a caption.

“Having a frustrating day with chronic pain, but I find myself feeling so blessed to have such strong intelligent female doctors. I think about Joanne too and her strength and the day gets a little easier," she wrote.   

“Joanne” is Lady Gaga’s aunt – who died from lupus at the age of 19 before the singer was even born. Although they never met, Lady Gaga has always felt a connection to her late aunt, who was the inspiration for her newest album.

After an outpouring of support from her Instagram followers, Lady Gaga posted another photo of herself on Friday, showing the singer sitting in a sauna wrapped in an emergency blanket. It’s a remedy she uses to relieve pain and inflammation.

“I was so overwhelmed by the empathy, confessions & personal stories of chronic pain in response to my previous post I thought what the hell. Maybe I should just share some of my personal remedies I've acquired over the past five years. Everyone's body and condition is different U should consult w ure Dr. but what the heck here we go!” she wrote.

“When my body goes into a spasm one thing I find really helps is infrared sauna. I've invested in one. They come in a large box form as well as a low coffin-like form and even some like electric blankets! You can also look around your community for a infrared sauna parlor or homeopathic center that has one.

"I combine this treatment with marley silver emergency blankets (seen in the photo) that trap in the heat and are very cheap, reusable and effective for detox as well as weight loss!”

Lady Gaga likes to alternate between hot and cold therapy.

“In order to not overheat my system and cause more inflammation i follow this with either a VERY cold bath, ice bath (if u can stand it, it's worth it) or the most environmentally savvy way is to keep many reusable cold packs in the freezer ( or frozen peas' n carrots'!) and pack them around the body in all areas of pain,” she wrote.

Lada Gaga reportedly suffers from synovitis, a painful inflammation of the joints, that apparently stems from a hip injury she suffered during a concert. The pain grew was so bad she was unable to walk at times.

After years of hiding her chronic pain from fans and even her own staff, Lady Gaga had surgery in 2013 to repair the injured hip and missed several concerts as a result.

She’s now one of the few celebrities to speak openly about her experience with chronic pain.

“Hope this helps some of you, it helps me to keep doing my passion, job and the things I love even on days when I feel like I can't get out of bed. Love you and thank you for all your positive messages,” she wrote on Instagram.

Fentanyl & Heroin Changing U.S. Opioid Epidemic

By Pat Anson, Editor

A prominent Alabama physician says the U.S. opioid epidemic has changed so profoundly in the last 3 years that a serious reconsideration of government policy is needed.

Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham School of Medicine, says heroin and illicit fentanyl are now the driving forces behind the opioid epidemic – not prescription pain medication.

“Reducing opioid prescribing is not going to save many lives at this point, even though it gives many officials a chance to look like they are doing something,” says Kertesz, who is also a primary care physician trained in internal medicine and addiction.

“If we have been reducing prescribing for several years, and the misuse of prescription pain relievers is near all-time lows… and overdoses are either staying very high or skyrocketing, then we need to change our assessment of the problem and refocus our response.”

STEFAN KERTESZ, MD

Kertesz cites recent data from Jefferson County, Alabama showing that most overdoses in the county are now linked to either fentanyl, heroin or a combination of the two. Only 15 percent of the overdoses are associated with prescription opioids.

In Ohio’s Cuyahoga County, about 11 people die each week from fentanyl or heroin overdoses. By the end of the year, the county medical examiner estimates that a total of 770 deaths will be caused by fentanyl or heroin, nearly ten times the number that will die from prescription opioid overdoses.  

source: cuyahoga county medical examiner

“Heroin and fentanyl have come to dominate an escalating epidemic of lethal opioid overdose, while opioids commonly obtained by prescription play a minor role,” Kertesz wrote in a commentary published in the journal Substance Abuse.

“The observed changes in the opioid epidemic are particularly remarkable because they have emerged despite sustained reductions in opioid prescribing and sustained reductions in prescription opioid misuse. Among U.S. adults, past-year prescription opioid misuse is at its lowest level since 2002. Among 12th graders it is at its lowest level in 20 years.”

Kertesz says the Centers for Disease Control and Prevention relied on faulty data and failed to address the changing nature of opioid abuse when it released its opioid prescribing guidelines in March. Since then, many pain patients have reported their opioid doses have been lowered or discontinued, while some have been discharged by their physicians and forced to seek treatment elsewhere.

He likened the situation to Pontius Pilate washing his hands.

“Discontinuation of prescribed opioids, coupled with encouragement to seek an inaccessible treatment, frees the physician from risk of prosecution or sanction. Inevitably, some patients so discharged will die from drugs they purchase on an increasingly lethal illicit market. At that point, an assertion of ‘clean hands’ by physicians, regulatory authorities or the federal government seems facile,” said Kertesz.

“The changing epidemiology of opioid overdose in 2016 offers no easy resolution to such difficult challenges. But it suggests that a relentless focus on physician prescribing for pain has become less relevant to correcting the forces behind a wave of deaths in 2016. Federal efforts to turn the tide risk becoming a riptide for patients, physicians and communities where access to evidence-based treatment remains a priority neglected for too long.”

By “evidence-based treatment,” Kertesz means access to addiction treatment medication such as buprenorphine and methadone, which is lacking in many parts of the country.

As Pain News Network has reported, the DEA says the U.S. is being “inundated” with illicit fentanyl produced in China and Mexico. Illicit fentanyl is often mixed with heroin to increase its potency or used in the manufacture of counterfeit pain medication.

Massachusetts recently reported that three out of four opioid overdoses in the state are now fentanyl-related.  Only about 20 percent of the overdose deaths in Massachusetts involve prescription opioids.

Massachusetts was the first state to begin using blood toxicology tests to look specifically for fentanyl. Toxicology tests are far more accurate than the death certificate codes used by the Centers for Disease Control and Prevention to classify opioid-related deaths. 

Iowa Lawmaker Calls Cancer Pain ‘Regular Ailment’

By Pat Anson, Editor

An Iowa state legislator is under fire from pain patients and healthcare professionals after suggesting that cancer pain was a “regular ailment” that should not always be treated with opioid pain medication.

Rep. Chuck Isenhart co- hosted a public forum this week on opioid abuse in Dubuque, where he called for new efforts to stop the heroin and opioid epidemic in Iowa.

"We've become dependent really on using strong painkillers for treatment of regular aliments such as cancer and inadvertently many people have become addicted to those painkillers," Isenhart told KCRG-TV in an interview.   

STATE REP. CHUCK ISENHART (D-DUBUQUE)

The comment angered pain sufferers around the country, who left comments on KCRG’s website.

“If cancer is a regular ailment unworthy of relief, what sort of ailment ‘deserves’ relief?” asked Anne Fuqua, a pain sufferer and patient advocate in Alabama. “Patients with chronic pain are suffering horribly due to pressure not to prescribe opioids. Patients have literally committed suicide as a result of uncontrolled pain.”

“I'd like to know how my dead mother’s cancer was a 'regular ailment.' Also, unless you have actually experienced the pain of chemo and all of the side effects from it, I wouldn't lump that in the same category,” wrote Anne Pavao.

“To call cancer a regular ailment just pisses me off. My husband has Stage 4 mets (metastasized) cancer. This is not a freaking headache. This is a chronic PAIN,” said Rene Saylor.

“Suggesting that cancer-related pain is a ‘regular ailment’ that should not be treated with opioids is just beyond the pale,” said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management. “I worked with people with cancer for 20 years, and I can assure this legislator, and anyone else who cares to ask, that the pain associated with cancer can be very severe and often warrants treatment with opioids—which are usually effective. Statements like this reflect a lack of knowledge that can be very dangerous when making policy.”

Even the CDC's opioid guidelines -- which discourage the prescribing of opioids for chronic pain -- make clear they are not intended for cancer patients or others with terminal illnesses.

"This guideline provides recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care," the CDC guidelines state.

We asked Isenhart if he wanted to clarify his remark.

“Cancers are a common health condition for which painkillers are often properly prescribed per evidence-based medical protocols. In some cases, the use of such opioids – whether proper and improper -- results in dependencies and/or leads to addictions after the initial indication has been addressed,” Isenhart said in an email to PNN.

“This is not my ‘position’ -- this is the testimony we received from medical experts who testified at our forum. If there is testimony to correct or elaborate, we are open to receiving it.”

Isenhart is a member of a special legislative committee charged with evaluating the “prescription pain medication crisis” in Iowa. Among other things, the panel is looking into whether overdoses from opioid medication are under-reported and whether physicians are complying with current prescribing guidelines. The committee is due to submit its recommendations to the full legislature by January 1.

PNN asked Isenhart if further limits on prescription opioids would be recommended.

"This is one of (the) questions that is being asked. I know my own doctor has told me that he would ‘rather prescribe Narcan than narcotics,’” wrote Isenhart. Narcan is an emergency medication used to reverse opioid overdoses.

“The serious lack of knowledge by this legislator is astounding. It suggests to me that his advisors are equally uninformed,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “I cannot believe the lack of reason and science that is influencing our policymakers.  It has to be frightening for all people in serious pain from cancer or non-cancer pain.”

Webster says only a small percentage of cancer patients develop an opioid addiction.

“People who develop a substance use disorder to opioids are usually polysubstance abusers and have almost always had a prior substance abuse problem.  It is rarely the exposure to an opioid that is the problem,” said Webster. “The misinformation about opioids and the risk of abuse is astounding.  The real tragedy is that the misinformation will not help solve the opioid crisis but will certainly contribute to more suffering by people in pain who will be ignored or denied compassionate care.”

Like many rural communities and cities across the country, Dubuque is being hit hard by a wave of opioid overdoses. So far this year, 9 deaths and 26 overdoses have been reported In Dubuque County. All were attributed to heroin, not pain medication.

Surgeon General Issues ‘Landmark Report’ on Addiction

By Pat Anson, Editor

Calling addiction “America’s most pressing problem,” U.S. Surgeon General Vivek Murthy has released a landmark report on alcohol, drug abuse and substance use disorders. Nearly 21 million Americans are believed to suffer from some form of substance addiction.

“Alcohol and drug addiction take an enormous toll on individuals, families, and communities,” said Murthy. “Most Americans know someone who has been touched by an alcohol or a drug use disorder. Yet 90 percent of people with a substance use disorder are not getting treatment. That has to change.”

The voluminous report, Facing Addiction in America: The Surgeon General’s Report on Alcohol, Drugs, and Health, takes an in-depth look at the abuse of alcohol, illicit drugs, and prescription drugs.  Murthy called for a cultural shift in the way Americans view addiction.

SURGEON GENERAL VIVEK MURTHY, MD

"For far too long, too many in our country have viewed addiction as a moral failing," Murthy said. "This unfortunate stigma has created an added burden of shame that has made people with substance-use disorders less likely to come forward and seek help.

"We must help everyone see that addiction is not a character flaw. It is a chronic illness that we must approach with the same skill and compassion with which we approach heart disease, diabetes, and cancer."

Murthy was blasted by one critic for releasing the report in the final weeks of the Obama administration.

“The timing of Murthy’s report is despicable,” wrote Dr. Manny Alvarez, the senior managing health editor at Fox News. “For two years, he did nothing to develop national protocols to tackle opioid abuse and waited until a Republican was elected president to issue the first-ever report from a U.S. surgeon general dedicated to substance addiction. He could have used this platform to shape his legacy as surgeon general, but instead, it appears he chose to play politics while using our nation’s health as a pawn."

Murthy did send a letter to over 2 million physicians in August, encouraging them to follow CDC guidelines and not prescribe opioids as a first-line treatment for chronic pain.

The report released today, however, makes surprisingly few references to opioid prescribing or to the soaring number overdoses caused by heroin and illicit fentanyl. At times, the report acknowledges that efforts to reduce opioid prescribing may only be making the nation's opioid problem worse.

“Although only about 4 percent of those who misuse prescription opioids transition to using heroin, concern is growing that tightening restrictions on opioid prescribing could potentially have unintended consequences resulting in new populations using heroin,” the report states. “As yet, insufficient evidence exists of the effects of state policies to reduce inappropriate prescribing of opioid pain medications.”

As Pain News Network has reported, fentanyl overdoses have been escalating rapidly. In Massachusetts, nearly three out of four opioid overdoses this year have been linked to fentanyl, far outnumbering the number of deaths associated with prescription pain medication.

One of the findings of the Surgeon General’s report is that addiction treatment in the United States remains largely separate from the rest of health care and serves only a fraction of those in need of treatment. This “treatment gap” is attributed to a number of factors, including lack of access, cost, fear of shame, and discrimination. Many people are also not referred to treatment until there is a crisis, such as an overdose or arrest.

"This report comes at a critical point in time, drawing national attention to a public health epidemic that continues to sweep the country," said Shaun Thaxter, CEO of Indivior, the maker of the addiction treatment drug Suboxone. "We are encouraged by the proactive steps taken by the U.S. federal government to raise awareness about this chronic disease and ensure that patients have access to the treatment they need.”

Kolodny Leaves Phoenix House

In related news, Andrew Kolodny, MD, the founder and executive director of Physicians for Responsible Opioid Prescribing (PROP), has announced that he is no longer the chief medical officer at Phoenix House, which runs of chain of addiction treatment centers.

Kolodny is now co-director of opioid policy research at the Heller School for Social Policy & Management at Brandeis University

PROP, an advocacy group that seeks to reduce opioid prescribing, ended its association with Phoenix House earlier this year. The non-profit Steve Rummler Hope Foundation is now the “fiscal sponsor” of PROP, which allows PROP to collect tax deductible donations.

Time to Fight for Our Rights as Pain Patients

By Carol Levy, Columnist

Where exactly do the Drug Enforcement Administration and the Centers for Disease Control and Prevention stand on working with and helping those with chronic pain, as opposed to ignoring our voices and pleas?

At the Rally Against Pain in Washington, DC on October 22, the CDC was invited to come but no representatives attended.

The DEA notifies all that they will be banning kratom because it is “an imminent public health hazard.” But after a major hue and cry from the kratom community, a decision was made to conduct a new analysis of the herbal supplement and have a public comment period.

Why is it that kratom and medical marijuana, which many patients say are effective in relieving chronic pain, are poison to the powers that be in Washington?

Is it just the result of lobbying by the pharmaceutical industry in an effort to protect profits?

Is it another jab at us because they can't see our “invisible” illnesses and disorders?

Is it a result of the media and the public not knowing or caring about our plight?

October 7 was Trigeminal Neuralgia Awareness Day. Many of us tweeted and posted on Facebook about it, but the news media for the most part gave it a ho-hum. Do they have a policy of not reporting on a disorder if they don’t think enough people have it?  

Instead, the media seems content to repeat the hysteria laden stories and recycle articles about opioid medication abuse, while mostly ignoring those who may benefit from opioids or have them as their only treatment option.

While it is scary to see headlines about banning kratom and other substances many of us use for pain relief, it is worth remembering that an FDA advisory panel in 2009 voted to ban Vicodin and Percocet, because of their effects on the liver. No such ban was adopted, but they did change the amount permitted and how you can get them.

We need to be concerned about the “slippery slope” that comes with threatened bans. Instead of reacting with fear and wasting our emotional energy, we need to respond proactively. Better to get out paper and pen, and start sending letters and emails to your representatives in Congress and the FDA, DEA and CDC.

Kratom supporters won their battle, at least temporarily. Why can’t we?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

Daughter Says Untreated Pain Led to Mother’s Suicide

By Pat Anson, Editor

Suicides are never easy to accept. Especially if they involve a loved one. Even more so if they could have been prevented.

Lacy Stewart says her mother never would have killed herself if she’d been given proper medical care for her chronic fibromyalgia pain.

“I feel angry about the way she was treated,” says Stewart, a registered nurse who believes the healthcare system not only failed to treat her mother, but drove Marsha Reid to suicide at age 59.

“Her life was taken from her is the way I feel,” says Stewart. “I know it was. A person can only handle so much pain for so long. It takes its toll on every area -- your mind, your body, everything. And she just couldn’t do it anymore. She’d had enough. Because nobody would help her. Nobody.” 

Stewart says her mother was fit and physically active – handling all the chores at her 10-acre farm in north Texas -- until she slipped on ice and landed hard on her face in 2009. Reid broke a few teeth and sustained nerve damage in the fall -- injuries that evolved into the classic symptoms of fibromyalgia: chronic widespread pain, anxiety, fatigue, insomnia and depression.

“Of course she sought out help. Searching for doctors that would take her on, she encountered road block after road block. Many doctor’s offices would just flat out say, ‘We don’t take fibromyalgia patients,’” recalls Stewart.

“So you take that and couple it with the fact that pain medication is often required for these patients and now the CDC has regulations that deter a physician from wanting to prescribe pain medication at all and you end up here. Zero help for a woman suffering day in and day out for all these years. She lost her job, her home, her independence.”

MARSHA REID AND DAUGHTER LACY

In January, Reid checked into a hotel room and tried to kill herself by taking a full bottle of Xanax. The failed suicide attempt left Reid even more depressed and her health deteriorated further. She started having hallucinations, hearing voices and seeing dead people.

In July, Stewart drove her mother for five hours to see a pain management doctor.

“I was appalled at the treatment from the physician. We explained the pain and the issues with her mind, and he said he could only treat one or the other. Not both! Not the whole patient! When I brought up pain medication you would have thought I had asked him for heroin,” says Stewart.

“I'll never forget the conversation I had with him in the hall on the way out. I looked him in the eye and said the pain is so severe she will kill herself! It’s only a matter of time. He basically said his hands were tied because of the regulations and what I was asking was for him to lose his license! I was furious and felt betrayed by the field I loved, medicine.”

One treatment was suggested for her mother.

“They wanted her to go to water aerobics,” said Stewart. “The woman could barely take a bath and they wanted her to go to water aerobics! I read in the CDC (opioid) prescribing guidelines that they wanted doctors to use alternative measures for pain relief such as water aerobics and physical therapy. They never spent a day in pain in their lives, obviously. Because then they would know that is ridiculous. It’s almost a joke to me, the guidelines that I have read.”

Crisis in Pain Care

In recent months, Pain News Network has been contacted by dozens of pain patients who say they are contemplating suicide. It’s not just the difficulty in getting opioid pain medication. The growing crisis in pain care has reached a point where many patients are unable even to get a doctor’s appointment.

“I have been on a wait list for pain treatment for a year now. I am suffering needlessly and am questioning my ability to be able to live like this much longer,” said Isabel Etkind, a Connecticut woman who suffers from severe arthritis pain.

“I don't want to die but I can't live like this either. I know that many other people are experiencing the same thing, but knowing that does not really help! It is inhumane and cruel to treat people this way. If I were a dog, cat or horse, the animal rights people would be all over it, but torturing humans is OK. As is usually the case, the elderly, the military and the poor are suffering the most.”

Another woman, who suffers from chronic back pain, asked that we not use her name. She works in the emergency room of a hospital in southern California that recently adopted a policy of not prescribing opioids unless all other pain treatments have failed.

“Since November 1, we have seen a huge increase in overdoses from street drugs. Nearly all of these patients are chronic pain sufferers who are now getting their medications off the streets. A 33-year old fibromyalgia patient died from fentanyl overdose this week,” she wrote to PNN. “I understand the desperation these patients feel and try to educate the ER doctors about chronic pain from a layman's point of view. This new effort to stigmatize and demonize chronic pain sufferers has got to stop!

“We have full time jobs, pay mortgages, raise families. All this, while in levels of pain that normal people couldn't handle. We hate having to be chained to pill bottles and doctors and pharmacists. What other choice do we have? Curl up and die? I hope the new Trump administration will appoint people to DEA and CDC who will think of us as humans and help us instead of hurting us.”

Suicides Increasing

According to the CDC,  suicides increased by 24 percent from 1999 to 2014, and are now the 10th leading cause of death in the United States.  

In 2014, nearly 43,000 Americans killed themselves, three times the number of deaths that have been linked to prescription opioid overdoses.  

Marsha Reid died of a self-inflicted gunshot wound on November 2, leaving behind a grief stricken daughter who will always wonder if things would have turned out differently if her mother had gotten the pain treatment she needed

“She talked about this a lot, about suicide. That was her plan. She couldn’t deal with this much longer. And that’s what breaks my heart the most is that I was unable to help,” says Lacy Stewart.

“Just mention the heartache she has left behind. Because if another fibromyalgia patient is out there contemplating this and they come across this story, I want it noted that I lost my mom forever and I’m 32 years old. And I’ll never have her back.”

MARSHA REID

Is Cannabis Science's Pain Patch for Real?

By Pat Anson, Editor

A California company that claims to be developing a cannabis-based skin patch to treat chronic pain is “a fundamentally unsound company” with a long history of misleading the public and its own shareholders, according to analysts. The founder and former CEO of Cannabis Science has even accused the company’s current management team of fraud and deception.

At various times in its history, Cannabis Science has gone under the name Patriot Holdings, National Healthcare Technology, Brighton Oil & Gas, and Gulf Onshore. Now it has a slick new website, and is passing itself off as a pharmaceutical development company with a pipeline of cannabis-based drugs to treat asthma, HIV and chronic pain.

“I'm not sure if Cannabis Science is a biotech firm, an oil and gas exploration company, an educational university or a pot distributor, the only thing I am certain of is that Cannabis Science is in the business of moving money from public investors to executives' pockets,” wrote John Brody Gay in a lengthy analysis published by Seeking Alpha, an investing website.

Gay and other analysts say Cannabis Science is a classic “pump and dump” penny stock that produces little revenue, but a steady stream of press releases to promote its business activities, which never seem to come to fruition.

Often other websites are hired by pump and dumpers to publish their press releases or write glowing reviews about a company known as “advertorials.” Others are simply ignorant and don't do their homework. The publicity and fake news generates a brief flurry of interest in the company’s stock, which is when executives and other insiders often sell their shares. By raising the stock price by a few pennies, company insiders can double or triple the value of their holdings.

On November 2, Cannabis Science issued a press release saying it was developing skin patches to treat pain caused by fibromyalgia and diabetic neuropathy.

"The development of these two new pharmaceutical medicinal applications are just the tip of the iceberg for what we see as the future for Cannabis Science. While we strive to increase our land capacity for growth and facilities to produce our own product to supply our scientists with proprietary materials to make these formulations, we are also busy researching more potential needs for Cannabis related medical applications,” Cannabis Science CEO Raymond Dabney was quoted as saying in the news release.

Dabney is no stranger to accusations of deception and stock manipulation. In 2005, he admitted issuing 22 bogus news releases to promote another penny stock. For that he received a five year trading ban from British Columbia’s Securities Commission, according to Forbes and the Vancouver Sun.

A former CEO and president of Cannabis Science has also accused Dabney of fraud. Steve Kubby and other directors resigned after learning that Dabney, who was then working for Cannabis Science as a consultant, diverted company funds into a private account.

“When it became clear that our company had become entangled in fraud and deception, we demanded answers. Instead, those behind the fraud illegally removed me. Yes, we could have fought it and won, but attorneys repeatedly warned us that it is only a matter of time before the SEC will be investigating the company’s many questionable activities,” said Kubby in the Independent Political Report. “Actually, these guys have done me a great favor, because they have removed me from a stinking mess and assumed the liability for themselves.”

Kubby himself was accused by the company of "using unauthorized company shares as collateral or consideration for his personal gain."

Calls to Cannabis Science and Dabney for comment on the allegations were not returned.

‘Substantial Doubt’ About Company

The bottom line in all of this is that Cannabis Science is nearly broke and considers its own future questionable, which it discloses in its most recent financial statement to the Securities and Exchange Commission.

“The Company is not currently in good short-term financial standing. We anticipate that we may only generate limited revenues in the near future and we will not have enough positive internal operating cash flow until we can generate substantial revenues,” the company said. “There is substantial doubt as to the Company's ability to continue as a going concern without a significant infusion of capital.”

In the first six months of 2016, Cannabis Science reported revenue of only $5,787, and debt and liabilities of over $5 million.

What the company has plenty of is stock. Nearly two billion shares of Cannabis Science are currently trading on the over-the-counter “pink sheet” market, and the company is authorized to release another billion shares whenever it wants. It pays its executives, debtors and vendors in newly issued shares, which are typically sold at opportune times.  

Chief Financial Officer Robert Kane, for example, was paid with 20,000,000 shares on March 8. In October, Kane sold over 9 million shares for $384,000.

Nice work if you can get it.

With more and more states legalizing both medical and recreational marijuana, the cannabis industry is estimated to be worth $7 billion and growing quickly. So is the opportunity for fraud.

The Financial Industry Regulatory Authority (FINRA) warned about a profusion of marijuana stock scams three years ago, advice that still holds true today for investors, as well as pain patients.

“Like many investment scams, pitches for marijuana stocks may arrive in a variety of ways – from faxes to email or text message invitations, to webinars, infomercials, tweets or blog posts,” FINRA said. “The con artists behind marijuana stock scams may try to entice investors with optimistic and potentially false and misleading information that in turn creates unwarranted demand for shares of small, thinly traded companies that often have little or no history of financial success.”

Cannabis Science was out with yet another press release today, this one talking about its plan to build a 33,000 square foot marijuana greenhouse in Nevada. No details were offered on when the greenhouse would be built, how much it would cost, or who would pay for it.

"It is such an incredible feeling to see our great plans finally coming to fruition," Dabney was quoted as saying.

Can Trump Make Healthcare Great Again?

By Barby Ingle, Columnist

As a chronic pain patient, I know that the Affordable Care Act (ACA) has not been so affordable for some people. Here in Arizona, monthly insurance premiums are going up 75 percent and the national average is seeing a double digit increase.

Running a foundation for the past decade, I have heard many stories of patients unable to afford proper and timely healthcare. Since the enactment of Obamacare in 2010, I've heard even more stories of regret, loss of care and rising costs. Premiums have gone up so much that many would rather pay the penalty for not having insurance, instead of getting it.

I am not sure if President-elect Donald Trump can "repeal and replace" the ACA in a timely manner. It will take an act of Congress to completely repeal ACA and eliminate the individual mandate.

We need to broaden healthcare access for all Americans, especially those of us living with chronic illnesses. Let’s look at the 7 steps proposed by Trump during the presidential campaign.

1. Completely repeal Obamacare and eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to.

I agree with not mandating the purchase of insurance, but I also see why it was put into the plan. It was thought if we force everyone to pay into the system, it will be easier to bear the costs of caring for the elderly and disabled. 

Current enrollment for Obamacare shows that less than 12.7 million of the 40 million without insurance are now covered. That's progress, but even with subsidies, many people in pain (not on disability) are unable to afford coverage. Also, many with insurance were cut from their long-time providers as their plans were no longer accepted by the provider.

2. Modify existing law that prohibits the sale of health insurance across state lines. As long as the plan purchased complies with state requirements, any vendor ought to be able to offer insurance in any state. By allowing full competition in the market, insurance costs will go down and consumer satisfaction will go up.

This is one provision I would like to see. I travel currently for my pain management care. I would like to see the sale of health insurance across state lines, as I believe it will offer me better in-plan coverage. Paying out of network is very costly for patients like myself.

As we allow the free market to play a bigger role, we must also make sure that no one slips through the cracks simply because they cannot afford insurance. We must review basic options for Medicaid and work with states to ensure that those who want healthcare coverage can have it. I don’t believe that basic Medicaid covers enough treatments for chronic pain patients.

I would also want multiple patient representatives and caregivers to play a role on boards and advisory committees that make these decisions. There is no plan in place for the involvement of the patient voice that I am aware of.

3. Allow individuals to fully deduct health insurance premium payments on their tax returns.

I would like the ability to fully deduct my health insurance premiums. Businesses are allowed to take these deductions, so why wouldn’t Congress allow individuals the same exemptions?

4.  Allow more individuals to use Health Savings Accounts (HSAs). Contributions to HSAs should be tax-free and should be allowed to accumulate from year to year. These accounts could become part of the estate of the individual and could be passed on to heirs. HSA funds could then be used by any member of a family without penalty. 

As someone who has participated in an HSA in past years, I found that they were not a benefit for me as a chronic pain patient. I spent everything in my HSA account as fast as it went in from my husband’s paychecks.

But for others who don't have to worry about paying for long-term chronic care needs, I have seen the HSA system work and help spread out costs throughout the year. HSA accounts would be particularly attractive to healthy young people with high-deductible insurance plans.  

5. Require price transparency from all healthcare providers, especially doctors and healthcare organizations like clinics and hospitals. Individuals should be able to shop to find the best prices for procedures, exams or any other medical-related procedure.

I believe in 100% price transparency from all providers, insurance companies, pharmacies and hospitals. We should be able to easily see the costs of our care.

6. Give Medicaid block grants directly to the states. Nearly every state already offers benefits beyond what is required in the current Medicaid structure. The state governments know their people best and can manage the administration of Medicaid far better without federal oversight. States will have the incentives to seek out and eliminate fraud, waste and abuse.

I like this as well. Giving each state the ability to fund and provide their own Medicaid benefits will be beneficial. We have to cut down on fraud and get proper and timely access of care to those who need it most.

7. Remove barriers that prevent foreign drug makers from offering safe, reliable and cheaper products. Congress will need the courage to step away from the special interests and do what is right for America. Allowing consumers access to imported and cheaper drugs will save money.

We need more abuse resistant medications, along with drugs that are more affordable. I agree that allowing consumers access to imported drugs will give us more options and help cut prices.

These seven steps are just the start of what we need to make the system work better. The process will take years to figure out. Let’s keep our voices loud as patients and advocates, so that we keep the good parts of our healthcare system and increase access for those who need it by lowering costs and opening access to alternative treatments. We also need to address the abuse of opioid medication, while maintaining access for those that truly need it. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She 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.