Would You Support a Boycott of CVS?

By Pat Anson, Editor

One of the most talked about issues in the pain community over the last two weeks has been CVS Health’s announcement that its pharmacists would soon start restricting doses of opioid pain medication and limit the supply of opioids for acute pain to 7 days.

The policy only applies to customers enrolled in CVS Caremark’s pharmacy benefit management program, but it quickly triggered an online backlash from pain patients – including many who called for a boycott of CVS.

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“I refuse to patronize companies that practice medicine without a license,” wrote Jeannette on PNN’s Facebook page.

“Don’t go there anymore. Hit them in their pocketbook,” wrote Lauren.

“I very rarely use a CVS and will never go there for prescriptions or anything else,” said Jackie.

“I left CVS years ago for Walgreens and I’m guessing many more will be doing so,” wrote Amanda.

"CVS has some nerve. The use of opioids, or any other drug, really, is up to the doctor and his or her patients, not a pharmacist. This is a terrible precedent, which will drive an even bigger wedge between physicians and patients,” cardiologist Arthur Kennish, MD, told the American Council on Science and Health.

The CVS boycott soon had its own hashtag on Twitter.

“Wrong way to handle, CVS! I will join the #BoycottCVS. You make it more difficult for the sick w/ no impact on the crisis,” Stephanie tweeted.

The online outrage even spilled over onto CVS’ Facebook page, where many negative posts were apparently deleted by the company.

“CVS Pharmacy, why did you take down all your Posts and comments regarding your big announcement over overriding doctor's orders and limiting patients' rights to their pain medication?” asked Lauri. “Where did they all go?”

People are so passionate about this issue that we started an online poll asking if they would support a boycott of CVS. Click here if you’d like to participate.

Would a Boycott Work?

But while there’s plenty of online enthusiasm for a boycott, it’s unlikely to be effective without the support of patient advocacy groups.  An informal survey of pain organizations by PNN found most were critical of CVS’ decision, but opposed to a boycott.

“I think boycotting CVS is not a good idea. I think a better idea is working with them for better care and finding the good in what they are doing and amplifying the bad.  They want better education, they want better disposal, and many other things we all fight for,” said Paul Gileno, President of the U.S. Pain Foundation.  “I don't think a boycott would work or be effective and can come across in a negative way. We need a loud conversation with CVS.”

“I don’t typically like boycotts” said Barby Ingle, President of the International Pain Foundation and a PNN columnist. “But if enough people have a bad experience or don’t like the CVS policies, they will see a drop in the market and will have to reevaluate what their policies will be.

“I wouldn’t call it a boycott, I would call it a shift in patients understanding that we have power and that we can choose to go to the healthcare places that fulfill our needs. Unless CVS changes their practices, I can see them continuing to lose business.”

Penney Cowan of the American Chronic Pain Association did not respond to a request for comment.

One patient advocate who gave full support for a boycott was Cynthia Toussaint, the founder of For Grace, a non-profit that supports women in pain.

“The lack of patient advocacy support for the boycott is totally surprising,” Toussaint wrote in an email. “We’ve all been beating the ‘don’t get between a doctor and a patient’ drum for years, and now that we can put our names behind that, we’re being sheepish.

“For Grace is ON BOARD with the boycott! This is chilling news for the pain world - and I hope our support helps many people. We understand CVS’s very real concern about the opioid crisis, but this new policy is too heavy handed and will greatly harm the chronic pain community!”

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CVS is not the first pharmacy to restrict access to opioid medication. In 2013, Walgreens gave its pharmacists a “secret checklist” to help them screen patients with opioid prescriptions. Any red flags, such as a prescription written by a new doctor or a patient paying in cash, could result in a prescription not being filled. The policy was implemented after Walgreens was fined $80 million by the Drug Enforcement Agency for violating the rules for dispensing controlled substances.

CVS has also been fined hundreds of millions of dollars for violations of the Controlled Substances Act and other transgressions, many of them involving opioid medication.

A Florida pharmacist who was fired this year by Sam’s Club for not following the company's opioid policy says pharmacies are driven by profit, not patient care, and a boycott is unlikely to change their bottom line. 

“Patients won't need to boycott. CVS doesn't want the business anyway,” says Karl Deigert, who was fired after complaining that patient rights were being violated at Sam’s Club, which is owned by Walmart.  “Corporations are only acting in their own best interest and have no concern for the patient. Patients can save their breath and energy as any complaints filed will fall on deaf ears. 

“Overzealous corporate policy makers have no desire or interest to protect the patients' well-being. Their policy making is self-serving to protect their assets from DEA scrutiny and monetary penalties. The corporations and the majority of retail pharmacists simply do not care to help the chronic pain patient population.”

The new opioid policy at CVS doesn’t go into effect until February 1, 2018. But CVS Caremark is already tightening the rules for some opioid prescriptions. 

A Caremark client who has been getting fentanyl pain patches at CVS for years was recently notified by letter that new limits are being placed on the patches “to help ensure that your use of opioid medication for pain management is safe and appropriate.” 

But is it really about safe and appropriate use?

The letter goes on to say the patient will still be able to get the fentanyl patches, but without prior authorization they “will have to pay 100 percent of the cost.”

When Life Doesn't Turn Out Like We Planned

By Barby Ingle, Columnist

Most of my conscious thoughts start when I was 4 years old. I knew then who I was going to be when I was an adult, or at least thought I did.

My parents thought I would change my mind. My dad even told me, “No, you can’t be a cheerleader the rest of your life.”

They were sure I would have children that would pester me, like I did them. They were sure that we all grow up and become the adult that society makes us into. I am over-simplifying life, but that is what we do to stay happy, positive and lighthearted.

I knew I was made to motivate and inspire others for as long as I can remember. I knew I would be a cheerleader for life, that I wouldn’t have children of my own, and that I would be organized and hardworking. Those beliefs I held as a child, I still hold today, for the most part. I knew all of this at age 4 and all of it came true and more.

The “more” is the life I live in the present, at age 44. The road of life that brings changes, roadblocks, boulders, mountains, and stoplights is constantly changing and unpredictable. I didn’t know what tomorrow will bring.

One day, all the roadblocks hit at once. I was 29 and never imagined anything like the life I have now. It was devastating for a while. I eventually realized that this is just life. I have the power and choice to make mine happy and productive. Things are going to happen that are great, devastating, happy, sad, and every level in between.

It shouldn’t take 3 years and 43 providers to get a proper diagnosis. But it did. Everyone should be able to live the life that they want. But most of us can’t. According to one survey, only 1 in 11 people are working in their childhood dream job.

So, what do we make of life when chronic illness strikes? Is life over?  I think not. I found a way to change my new realities so that -- even in pain -- I was living my dreams.

I think it would be even easier if you are among the 10 of 11 people who didn’t realize your destiny. Maybe you have been doing it all along. No matter if you know your destiny or are making it up as you choose, in each moment the core of you is the same.

Let’s face the challenges of living with chronic pain with more positivity, optimism and motivation. When the world gives us lemonade, we make margaritas. When it takes away the chocolate, we find new ways to make dessert.

I know my message may be hard to hear if you are a pain patient. So I will share a few tips on how I keep myself moving, keep being ME, and hopefully inspire you to look at life in a new way, when it’s not turning out as planned.

First, I realized that I can’t control all the things that happen to me, but I can decide how I will react to what happens. I can plan and counter-plan, and then make the best of the new reality.

We all have our stories. That is what we are creating here on earth. Stories should be shared. Sharing them can be a decisive action. Some are mere ripples and others can be tsunamis, meant to teach us and those with whom we share a new life lesson.

No one story is sadder or happier than anyone else’s. Life and how we react to it is what matters. You can choose your path, make a new one, or follow others. It really is up to you.

Developing a chronic illness changes how we see life. Pain changes everything about life. When a roadblock comes your way, take a step back, look around to explore the whole picture, and decide how you’d like to respond.

We must learn to be brave facing our new reality. When something does shake us to our core, we must take the time to face it, understand the emotions of the situation, and realize that tomorrow can be a better day. Being honest with myself, especially when things don’t go my way, reminds me to hold on for one more day. Things will change, even in the darkest of moments. Hold on and you can make it through.

Take the time to understand yourself, learn your new boundaries, test those boundaries, and know that it’s not your fault. Life just is what it is. What can you do to make it better for yourself?

It is important to be open to new treatment options, new health discoveries, and new life experiences (or old ones being done in a new way). Hanging on to what could have been would make me bitter and resentful.

Finally, remind yourself constantly that pain won’t get you down forever. It takes work to create the life that you want, and you may fail at times. It doesn’t mean that you are worth less, that you are not going to be successful, or that you can’t change the outcome to something more positive.

How you choose to respond is what matters and that is what life’s all about.

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.

How Have the CDC Opioid Guidelines Affected You?

By Pat Anson, Editor

Next month will mark the one year anniversary of opioid guidelines released by the Centers for Disease Control and Prevention – guidelines that discourage primary care physicians from prescribing opioids for chronic non-cancer pain.

At the time of their release, the CDC estimated that as many as 11.5 million Americans were using opioid medication daily for pain relief. Many of those patients now say their doses have been abruptly lowered or they are unable to obtain opioids at all.

That could be a good thing, depending on your point of view about the nation’s so-called “opioid epidemic.” Former CDC director Thomas Frieden, MD, has called the guidelines an “excellent starting point” to stop an epidemic fueled by “decades of prescribing too many opioids for too many conditions where they provide minimal benefit.”

Many pain patients disagree, saying they’ve used opioids safely and effectively for years. They say the guidelines have had a chilling effect on many of their doctors and are being implemented in ways that go far beyond what the CDC intended.  

“Last year, when the CDC ‘recommendations’ came out, the entire building of the only doctor's office I can go to decided they were rules, and cut me from 210 mg/day morphine to 90 mg. Now they say they can only give me 60 mg/day,” wrote Eli, one of hundreds of patients we’ve heard from in the past year.

“I'm in so much pain I can't properly care for myself, nor get to town for supplies when I need them. I've become increasingly more disabled and dependent on others.”

“My pain management doctor told me that the CDC required that all morphine be taken away from all Americans,” wrote a California woman who suffers from severe back pain. “He even stated that surgeons were sending home their post-surgery patients with Motrin, nothing else.

“What are you people in the CDC doing? Don't you realize how paranoid doctors can get? You may think using the term ‘guideline’ will help them understand what you are trying to do, but you have created a bunch of neurotic paranoids. Stop it. Do something before you kill all of us.”

“I am a 76 year old intelligent woman who is not an addict or an abuser, yet I am denied relief from unremitting pain even after 20 years of trying every drug and treatment modality available,” wrote Roberta Glick. “I am at a total loss as to what to do, how to fight, etc.  My physician is a strong supporter.  He is not the problem. He also is a victim of misguided CDC attempts to curb drug addiction.”

Are the CDC guidelines voluntary or mandatory? Have they improved the quality of pain care? Are patients being treated with safer and better alternatives? Most importantly, are soaring rates of opioid abuse and addiction finally being brought under control?

Those are some of the questions Pain News Network and the International Pain Foundation (iPain) are asking in an online survey of patients, doctors and other healthcare providers.

“I strongly believe that as these guidelines are implemented by doctors and hospitals around the country there are important lessons to learn from those who are affected by them,” says Barby Ingle, president of iPain and a PNN columnist.

“I hope that pain patients and providers participate in this survey so that we can begin to show how deep the impact actually is to the chronic pain community one year later.” 

The online survey consists of less than a dozen multiple choice questions, which should take only a few minutes to complete. Please take time out of your busy day and complete the survey by clicking here.

The survey findings will be released on March 15th, the first anniversary of the CDC guidelines. By taking the survey, you can also sign up to have the results emailed to you.

‘Hope Is True’ Primed to be Pain Community Anthem

By Barby Ingle, Columnist

Even the tiniest spark of hope can get someone through the toughest moments in life – whether the challenges are physical, emotional or spiritual. Sometimes, all it takes is a song to help us feel better about ourselves.

Chronic pain affects one in seven globally, so it’s bound to affect you or someone you know. We need a way to have the voice of pain patients be heard so society will better understand our challenges and provide better support. That’s why the International Pain Foundation (iPain) developed the Music Moves Awareness project.

This month we released a new song and music video to shed some light on the daily challenges faced by the pain community. “Hope Is True” was created in collaboration with some of the brightest talent in the entertainment industry, including Ryan Young, William J. Fuller, The Silhouettes, Lynne Waggoner-Patton, Who is Emileigh Productions, Alex Geringas and Intellectric Media.

All funds raised from iTunes and other outlets through sales of “Hope Is True” will benefit iPain programs and the pain community. iPain is dedicated to shining a light on chronic pain, funding research and helping patients get better access to pain care. As we move forward, iPain will be using music -- particularly this new song -- to educate the world about chronic pain issues and their social, cognitive, physical, emotional, and developmental impact.

The International Pain Foundation recently celebrated its tenth anniversary and the Music Moves Awareness program by hosting a premiere party for “Hope Is True” in downtown Los Angeles. Celebrities who came out in support included Christina Milian, Ally Hilfiger, Rachel Reenstra, After Romeo, Bret Lockett, Chris Caldovino, Gillian Larson, Billy Blanks Jr., Dre Davis, and many others.

It’s all about raising awareness. We have celebrities come to events like this to tweet about it and talk about it -- and then we turn the spotlight on patients and share their stories.

The Music Moves Awareness project is centered on empowering chronic pain patients to live the very best lives they can. We believe music has the power to make lives better and inspire those living with chronic pain to become engaged by being their own best advocate.

All of our educational events are free for the patients to attend. My dad started the foundation because it took three years to get a proper diagnosis for me. We figured if it happened to me, it’s probably happened to other people.

What started as a family project turned into a non-profit foundation. We’ve done pain expos, symposiums, and currently have a webinar series as a part of the Music Moves Awareness initiative. We also get the word out by distributing printed materials and recently launched our new magazine, iPain Living.

iPain supports the idea that chronic pain is a real and complex disease that exists either by itself or can be linked with other medical conditions. As a charity, we campaign for effective pain care through an array of treatment options, many of which are widely inaccessible. Chronic pain is an unrecognized public health crisis with devastating personal and economic impacts. Most importantly, we operate under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.

Over the next 18 months, we’ll be releasing features about chronic pain patients, sharing their stories and putting the spotlight on them. Each patient has a different pain condition, different treatment options that they’re pursuing, and things that are going on in their lives. 

This will help the world learn more about chronic pain and give us all new hope. 

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 on 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.

Take Our Survey About Hospital Pain Treatment

By Pat Anson, Editor

Over the last few months, we’ve received hundreds of reader comments about the poor quality of their pain care in hospitals and emergency rooms. Many said they their pain was not treated or undertreated, while others said they were misdiagnosed or labelled as addicts if they asked for pain medication.

In an effort to keep the dialogue going and see just how common these problems are, Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain sufferers about their treatment in hospitals. The survey, which you can take by clicking here, should only take a few minutes to complete.

One reason we’re doing the survey is because a group of U.S. senators recently proposed that Medicare no longer require hospitals to ask patients about the quality of their pain care. The senators believe questioning patients about their pain leads to over-prescribing "because physicians may feel compelled to prescribe opioid pain relievers" to improve their hospital's ranking in patient satisfaction surveys.

Why would we want to reduce pain care or stop asking about a person’s comfort and pain levels?” asked Barby Ingle, president of IPain, who knows from experience what it’s like to go untreated or undertreated in a hospital. Barby recently wrote a column about ways to make your hospital stay easier.

“The International Pain Foundation has been hearing increasing stories of undertreated pain care in ER and hospital settings over the past few years,” she said. “With such a large outcry from pain patients across the country saying ‘don’t go the hospital for pain, they don’t know how to treat pain,’ we know there is a problem. How can it be addressed? Surveying the pain community will help put a spotlight on this issue and show lawmakers, providers, insurance companies, and the pain community that we need more focus on our pain care needs, not less.”

A recent development that will affect future pain care in hospitals is the release of new guidelines for post-surgical pain management. The American Pain Society is encouraging physicians to use opioids alongside “multimodal therapies” such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), Lyrica, Neurontin, and cognitive behavioral therapy to treat patients in post-operative pain.

“Cognitive behavioral therapy? Really? So you cut into my nerves and tissue and muscles for 6 hours, and the pain is all in my head?” is what Janet Lynn wrote about that idea.

“So when the NSAIDs shut down a person’s kidneys or cause massive stomach irritation and bleeding is it time to give a patient a narcotic pain med?” asked Sharon Storck

Even doctors aren’t immune from poor treatment in hospitals. Family practice physician Lisa Kehrberg, who has severe abdominal pain from visceral neuropathy, recently wrote about one of her experiences in a hospital (see “My Journey From Doctor to Chronic Pain Patient”)

“The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced,” wrote Dr. Kerhberg. “Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.”

Has this ever happened to you? Are you satisfied with the quality of your pain care in hospitals? Take our survey and let us know, by clicking here.

What to do Before Seeing a Doctor

By Barby Ingle, Columnist

When I first started having chronic pain issues, I would go into the doctor’s office and expect them to fix me. But we were talking two different languages and I was getting nowhere fast.

Learning to communicate with your doctors is important in your treatment plan. To do this most effectively, it is important to prepare. Improving your communication skills will lead to better treatment and pain relief.

Before seeing a doctor, try to put your thoughts in order so that you can accurately describe what you are experiencing. On days like the past few weeks, when I am in a full body flare and my pain is very high, my brain starts to mess up my words and even normal conversations become difficult.

Times like these made me realize that I had to get organized and prepare a checklist for my doctor visits. It’s part of becoming your own best advocate.

You can start by answering questions, such as “What did I do since I last saw this doctor?” Review past treatments and ask yourself, “Are they working and what makes the pain better or worse?”

It is good to keep a journal of your activities and pain levels so that you can reflect on these questions. Keeping a journal helps me organize my thoughts and answer these questions more precisely and accurately.

When you keep track of your pain, you gain a better understanding of what causes it, and what activities help or hurt. Prepare a personal history, be brief, and stick to the needed information on your checklist. If there are any concerns about your medications or if you would like to try a different medication you have researched, be able to explain why to your doctor.

Another important step is getting your emotions under control. I have found that if you go into the office showing frustration, anger, anxiety or other negatively perceived emotions, the doctor will be less likely to provide you with useful tools. Providers will focus on your mental status first.

I experienced this phenomenon a lot in the beginning of my search for proper treatment and diagnosis. So many doctors said, “Do you want to get better?” or “It is all in your head, so I can’t help you.” One physician even told me, “Try a different doctor. I am stumped and these symptoms don’t make sense.”

Letting your emotions get the best of you at the doctor’s office will create trouble. If you prepare ahead of time, you may still have these emotions, but you will be better able to keep them under control. You will also have a more productive doctor visit by staying on track and progressing forward with a treatment plan.

Go into the appointment having evaluated yourself and your symptoms. Keep yourself in check, stay calm and positive, and assist the doctor with finding the answers so that the outcome will be more beneficial for you.

Every provider is not the same. One of the most important decisions confronting patients who have been diagnosed with a serious medical condition is choosing a qualified physician who will deliver a high level and quality of medical care. Finding the "best" doctor to manage your condition, however, can be frustrating and time-consuming unless you know what you are looking for and how to go about finding it.

In the beginning of my ordeal, I followed what the doctors told me to the letter, even when I had doubts about their recommendations. My focus was on getting better and I was brought up to believe that doctors knew better and had all the answers. It took me almost three years after my accident to realize that this was a complete myth. Healthcare providers are human too, and they can make mistakes.

When preparing to see a provider it’s important to know your needs so you can be assertive and ready to listen to their instructions while in their office. Try to find a close friend or family member who can attend with you or record the exam on your smartphone so you can refer back to it between appointments.

The day before or on the morning of an appointment, write your questions out. I create a one page checklist that includes my medications/dosages, what I need a refill on, current issues, ongoing issues, past procedures, and questions. I use this checklist to guide my appointment so I cover everything important. I put my thoughts in order so that I get the best care possible.

Another time this comes in handy is in an emergency situation. About a month ago, I had to head to the emergency room after breaking my foot. I was simply walking in my house and walked into a wheel of a suitcase. My bones are fragile and I knew instantly from the sound and the pain that my foot was broken. I grabbed a copy of my latest checklist and headed out the door.

When the nurse came in to take my history and vitals, the pain was overwhelming, but my checklist answered most of her questions. I didn’t have to concentrate on making sure she got the right information, as my brain was clouded with severe pain at the time. That helped her help me. Being prepared is an essential element for proper diagnosis and treatment.

In my next column, I’ll have some tips on what to do during the actual visit to a doctor.

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.