How to Advocate With the News Media

By Barby Ingle, PNN Columnist 

So many in the chronic pain community wonder how to share their stories with the news media and connect with reporters. I have been doing that for years as a patient advocate, creating newsworthy content that helps educate the public about the issues we face.

The media are a powerful tool for advocacy because they can help you reach a larger audience and get your message out there. Networking with different media outlets has allowed me to spread my advocacy message further and make a real impact. I have built relationships with the media and gained access to publications I never had before. 

For example, I researched all of the major news outlets in Arizona, where I live, and learned who the producers, publishers and health writers are. I then connected and introduced myself to each of them.

Whenever I have a significant news item in the chronic pain or rare disease community that affects Arizonans, I reach out. Even when I do not have a specific story to pitch, I stay in touch. That helps to keep me in their minds. When they have a new story or need to verify something, they contact me for comment and to confirm the information. 

Media outlets can help you reach your target audience and spread the word about patient issues, products, services and disease-specific information. The more information we share effectively, the better access we’ll have to treatment. Media can be a friend or foe. We must learn to use them to get others involved.

We must also be mindful of our message and portrayal in the media, ensuring the information we provide is accurate and that the story is told to benefit our cause. We should also be prepared for any potential negative backlash from media campaigns. Choosing bipartisan, non-political topics, such as promoting individualized care and understanding how our medical system works can avoid this. 

We must also remain vigilant and aware of misinformation and bias in the media. It is essential to consider the impact of our message and how different communities may perceive it. 

Sharing Your Message

How can you share your message through the media to make a difference? Focus on issues that resonate with their audience and yours. Be bold in your advocacy approach. Feel free to challenge the status quo and use the media to highlight critical issues.

You can use a variety of mediums to reach your target audience. Be open to sharing on television, radio, newspapers, magazines, online, and in support groups. 

Communicate your message creatively to build interest in topics. You will need to offer something “new” to the media and be prepared to discuss your subject from multiple points of view, so that it connects with more people. Monitor the response to your message and adjust accordingly. Follow up and ensure the right message is heard.

Different people have different interests and perspectives. It's essential to tailor your message to specific groups of people so that they can understand and appreciate what you have to say. 

A 60-second message I could leave for a local news reporter might go something like this:

“Hello. I am Barby Ingle, a health advocate and chronic disease patient with multiple rare diseases. I live in Gold Canyon, AZ, and am excited to be working with my state senator on health bill SB1234.

I live with a rare pain condition called Reflex Sympathetic Dystrophy. It has affected every aspect of my life: financial, social, family and access to care. 2.9 million Arizonans live with a condition that involves pain; here in our district, approximately 150,000 are affected.

SB1234 is designed to help patients like me get better access to proper and timely care. I would love to set up a time to speak with you in detail or I can come in for an interview or live segment. I will email you a copy of the bill and supporting details. Please be on the watch for it in the next few minutes.

Feel free to call me back or email me to schedule a meeting. I look forward to hearing from you or one of your staff members soon. Thanks!” 

You should know the audience or readership of the media outlet you work with. That will help you understand what approach to take with your messaging and takeaways for that audience. It will make your pitch stronger, and give readers and viewers an opportunity to act on it. Be creative in your approach and use various media platforms. 

Additionally, by monitoring the response, you can identify which messages are resonating and which may need further adjustments. Following up with your audience shows that you care and are invested in the conversation.

Making or sharing a video, podcast or online post to explain your topic further is also possible. Don't just do the media as a one-and-done -- share it on social media to reach a wider audience.

To conclude, we must be willing to engage with the news media and the public to ensure our message is heard. The media can give the pain community the attention needed to spread a message of need.

Be it a lack of individualized care, a decision that negatively affects the pain community, or a desire for an amended state/federal law, our voices can be used to make change and make a difference in the lives of the patients. Ultimately, we are responsible for accurately communicating our message to the press and the public. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. You can follow Barby at www.barbyingle.com. 

A Pained Life: False Narratives About the Opioid Crisis

By Carol Levy, PNN Columnist

The common belief that any patient who takes opioids for pain relief soon becomes addicted seems to have started in 2003, when The Orlando Sentinel published a front-page series under the headline "OxyContin Under Fire: Pain Pill Leaves Death Trail.”

The newspaper used the term "accidental addict" to describe patients who "put their faith in their doctors and ended up dead, or broken."

This characterization quickly became the go-to description for most news articles on the emerging “opioid crisis.” An innocent person, often a teenager on the cusp of life, suffers a painful injury. Their doctor prescribes OxyContin or some other highly addictive opioid and their lives are forever changed. They take higher and higher doses, become addicted, and die from an overdose.

Four months after publication, the Sentinel printed a correction. Two patients profiled in the series as “victims” were not newcomers to opioids, as they had been portrayed. They were using illegal drugs and abusing prescriptions long before their first dose of OxyContin. The Sentinel series also grossly overstated the number of overdose deaths that were caused solely by oxycodone, the active ingredient in OxyContin.

The problem was that the presentation of someone falling so far so fast due to prescription opioids remained irresistible to the media. It became the common narrative, especially in “recovery” stories about someone becoming addicted due to thoughtless opioid prescribing by a doctor or dentist.

This helped create the false belief that people in pain become addicted, very quickly and easily, to opioids. The lie took hold, even though a 2008 study found that chronic pain patients taking opioids had a rate of abuse and addiction of only 0.19% — less than one percent.

In 2015, another study was released that reinforced the false narrative. People in chronic pain on long-term opioid therapy had a “misuse” rate between 21 to 29 percent; and their addiction rates averaged between 8 and 12 percent.

Those are horrible numbers. And very misleading. Shortly after the study was published, the researchers admitted they may have exaggerated the potential for addiction.

“We agree that opioid use is not inherently risky, most patients seem to use opioids without misuse or addiction,” said lead author Kevin Vowles, PhD, a Professor of Psychology at the University of New Mexico.

But that kind of clarification we do not hear in the news. Instead, the story is still about patients prescribed opioids becoming addicted and fueling the opioid crisis.

Often ignored by the media is that opioid prescriptions have been declining for a decade and that most overdoses are cause by street drugs. Or that medical students now get more training in pain management. This may actually be the best and safest time to prescribe and receive opioid prescriptions. 

Most of us bemoan and rant against the CDC opioid guideline, and because many of our doctors feel intimidated by the DEA and state medical boards, fearing arrest and prosecution if they prescribe opioids. 

Maybe, though, the place we need to start is with the media, and getting them to tell the true narrative: most pain patients do not become addicted. 

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 Media Needs to Report the Truth About Rx Opioids

By Michael Emelio, Guest Columnist

Initially I was going to write an article about why we desperately need our doctors to fight for us. How they may be the only ones who will be able to convince the powers-that-be to stop punishing legitimate pain patients and open their eyes to the real consequences of reducing our access to pain medication.

While I believe doctors speaking out would help immensely, I fear that few will step up and make a difference. After talking to half a dozen pain management doctors this year, I believe that they have been so programmed by the anti-opioid propaganda that many believe they're doing the right thing and fail to realize the true extent of the suffering they have caused.

Tragically, it may only be when they've lost enough patients to street drugs or suicide that they’ll wake up.

We obviously don't have enough doctors fighting for us. Writing our congressmen and senators hasn't helped either. To make matters even worse, the mainstream media have failed miserably to report our side of the war on opioids. Most of the time they bombard the public with propaganda from the CDC and DEA.

But right now, the media may be our best and only chance to make people understand what happens when you take prescription opioids away from patients who really need them.

That is why we need to direct our protests at the media. Let’s start demonstrating at the front doors of newspapers, radio and TV stations, and other news outlets. Flood them with phone calls and letters to the editor until they can no longer ignore OUR side of the story.

We need to utilize the biggest tool we have and that is the media!

It's imperative that we get the truth out, until enough people are finally outraged to put their foot down. The whole country needs to know that the war on opioids is not only failing to reduce the number of overdoses but is making matters much worse. Millions of patients are suffering needlessly after having opioids taken away from them, leaving them no alternative for effective pain management other than street drugs or suicide.

That is what needs to be reported by the media.  And the only way these issues will ever get enough air time is if we put enough pressure on the media to do it.

What the hell is going on in our country? We're supposed to be the greatest country in the world, yet our government is directly causing millions to suffer needlessly. What is it going to take before the CDC and DEA realize they've gone too far?

Just how many easily avoidable deaths will it take to put an end this madness? Why is the mainstream media perpetuating this disaster by constantly reporting all the false facts rather than the truth? How many need to suffer and die before the truth is told?

Michael Emelio lives in Florida. He suffers from degenerative disc disease, scoliosis and fibromyalgia.

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

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

Fed Up With Media Coverage of Opioids

By Janice Reynolds, Guest Columnist

I got fed-up the other day with another article in the newspaper that lacks veracity and is truly not in the interests of the “people’s right to know,” as it is untrue, biased, and does not include any input from true experts.  

Where has integrity and veracity gone when it comes to the press?  I speak particularly of the Portland Press Herald, but many of the other news media also confuse opinion with fact and sensationalism with truth.

100 million people in the U.S. suffer from chronic pain related to many different causes, including cancer, yet no politician seems to care.  They are very uncompromising that an addict’s life is much more important. 

When the media is asked to show the evidence for the oft repeated claim that “studies have shown conclusively opioids don’t help chronic pain, in fact they make it worse,” requests are denied.  This is likely because there are no such studies on humans.

The one study which claimed opioids made pain worse was done on rats who had essentially been tortured – which is not evidence at all. 

Pain is pain, and chronic non-cancer pain does not differ physiologically from other pain.  With some types of pain, another medication may work better than an opioid, but most severe pain is relieved best by an opioid. 

A recent Associated Press article republished in the Portland Press Herald is an example of half-baked reporting:

“At least 43 states’ governors signed on to the Compact to Fight Opioid Addiction, committing to fight the epidemic fueled by the overprescribing of prescription pain relievers.”

There is no evidence to support this statement what-so-ever.  If you look at the history of the current epidemic, it has nothing to do with people with chronic pain.  There are many problems people want to apply to the epidemic’s cause, including the advent of OxyContin, but that is a correlation rather than a causation. Most overdoses now are heroin and illegal fentanyl related.  Blaming the overdoses on prescription drugs is pure conjecture. 

The “overprescribing” of opioids is pure opinion -- unlike the overprescribing of antibiotics, which is based on evidence and is a justifiable use of the word. 

One of the worst references in the article is the use of Andrew Kolodny.  The man is an addiction treatment doctor who his chief medical officer of Phoenix House, which operates a chain of addiction recovery centers (which the article fails to point out). He knows nothing about pain management and is a known opiophobic, yet is considered an expert on pain by the AP:

“Until recently, many policymakers believed the epidemic was fueled by drug abusers and that limiting prescriptions would hurt legitimate pain patients, Kolodny said. But now there is growing awareness that doctors and dentists are prescribing too many painkillers, which are addictive and hurting many otherwise good people, he said.”

Other “real” pain experts such as Dr. Forest Tennant, Dr. Lynn Webster, Chris Pasero and many others who are acknowledged internationally should have been quoted or allowed to give a counterpoint. 

The sin of omitting the opposition’s opinion is greater than lying outright.  When the media stacks the deck to reflect their opinion only, how can they be trusted? 

Meanwhile, people with pain suffer, many cannot even find a provider and suicides are increasing.  Insurance and Medicaid will not pay for many of the non-opioids and non-pharmaceutical interventions, and very dangerous drugs such as NSAIDs (ibuprofen, naproxen, diclofenac, etc.) are pushed. Some estimate there are 20,000 deaths a year from NSAIDs, but you don’t see that in the media. 

People with pain have become marginalized, and subjected to prejudice and bias, much of it due to media coverage of chronic pain and opioids.  Everyone should be concerned, as they are going after acute pain next.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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.

The Media’s Biased Reporting on Opioids

By Lynn Webster, MD, Guest Columnist

Have you heard the news about hyperalgesia? “This is the idea that opioid medication, instead of calming pain, might actually make pain worse,” says Stephen Martin, MD, EdM, an Associate Professor of Family Medicine and Community Health at the University of Massachusetts Medical School, who wrote a guest post for HealthNewsReview.

In his post, he points out that media stories such as these greatly worry him:

• Denver Post: CU Boulder study: Narcotic painkillers cause chronic pain,
• FOX News: Opioids may prolong chronic pain, study suggests,
• Washington Post: Opioid paradox: Could morphine use hurt as much as it helps by prolonging chronic pain?
• Forbes: Prescription painkillers may worsen and lengthen chronic pain

Dr. Martin agonizes over such biased media reporting because, like me, his greatest concern is the well-being of patients. He worries that reports like these about opioids could adversely affect patients.

In conjunction with the new CDC Guidelines, these reports may increase anxiety among some patients who are able to function with their medications but now, with good reason, they may fear that their access to painkillers will be tapered or discontinued “for their own good,” because the medication might “cause addiction,” or — and this is a twist the media has recently picked up on — because the opioids could “increase pain.”

As Dr. Martin points out, “The study [the media is referencing] involved rats that had sutures tied around their sciatic nerves. The sciatic nerve was tied and the animals were left in pain for 10 days. Then, the researchers administered morphine directly to spinal cords of these rodents for 5 days.”

He concludes, “The next time a patient of mine becomes a rat, has its sciatic nerve constricted with sutures, and asks for 5 days of morphine near its spinal cord 10 days later, maybe I’ll take another look at this study. In the meantime, I’ll tell my patients to ignore the unbalanced news coverage that the research spawned. I am not saying that hyperalgesia doesn’t occur, but I don’t think it is as evident as suggested by this rat study.”

“Urgent Opioid Public Announcement!” ~ Dr. Drew Pinsky  

Then there’s Dr. Drew Pinsky‘s “urgent” public service announcement,” addressing the effects of rampant opioid addiction that has already claimed the lives of countless people across the world.” You can see it here.

The real shame is that you probably already have seen it because, as a TV personality, Dr. Drew has name recognition that encourages viewers and fans to tune in to hear his latest messages. They see him on television shows that feature his name as part of the title, and they trust him.

So when he makes a statement such as, “The United States represents 5% of the world’s population, and yet we consume 80% of the pain medication – medicine that was not designed to be used for longer than 2 weeks,” viewers tend to think that there must be something wrong with the fact that the U.S. prescribes such a high percentage of the medication.

What viewers must consider is this: there are many reasons why the U.S. has 5% of world population and consumes 80% of the opioids. The chief reason among them is people in most other areas of the world do not have access to opioids and die in tremendous pain:

• There are billions of humans outside the U.S. who are in daily agonizing pain, many of whom can’t get any opioids to ease the pain from their cancers.
• Even if other parts of world would provide opioids for only hospice and cancer patients, and for no other reasons, the U.S. would not consume anything close to 80% of the world’s opioids.

U.S.-based physicians may overprescribe opioids to some people, but clearly, most people in the world do not receive the benefit of opioid therapy to mitigate their suffering when they’re dying. Providing relief from intractable non cancer-related pain is not even a consideration in many other countries for economic reasons.

I hope Dr. Drew is not suggesting we move toward that position in the U.S. I refuse to believe he feels it is acceptable for hospice and cancer patients to die in excruciating pain. Dr Drew must believe that unbearable pain needs to be treated, even with opioids if no other treatment is effective.

As a celebrity journalist as well as a medical doctor, Dr. Drew has more responsibility to show leadership than others. This requires that he not promulgate spurious theories and fuel hysteria. I’d say his “urgent public service announcement” is particularly damaging  because a trusted public figure should know better than to record a message of hyperbole that could do harm.

Biased Opioid Reporting Makes for Compelling Headlines

Since media consumers already fear opioids (with good reason, especially in the wake of the opioid-related death of pop star Prince and other high profile individuals), it’s tempting for journalists to tell viewers and readers what it expects to hear, wants to hear, or most fears hearing.

So media outlets’ ratings and advertising rates increase as they feed half-truths and out-of-context headlines to the public.

Sometimes, I wonder whether the media understands the harm that its actions can cause. I am sure Dr. Pinsky, as a physician, would never want to inadvertently contribute to misinformation. Unfortunately, his public service announcement may do just that. It could hurt, rather than help, the cause that we share: to help patients.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

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.

It’s Time for Pain Patients to Speak Up

By Emily Ullrich, Columnist

By definition, journalists are ethically bound to present both sides of a story; to be unbiased, objective, fair and equal. Stories that are not labeled as opinion should leave it up to the consumer to determine the truth or which side of the controversy they agree with.

But since the media have become obsessed with the so-called opioid epidemic, these necessary fundamentals seem to not apply. We, as consumers of media, need to ask why they have fallen short on this topic.

The government is also supposed to consider all sides before making laws which will potentially be detrimental to the lives and health of its citizens. But the CDC only furthered the anti-opioid hysteria by not including chronic pain patients or the doctors who treat them in the initial drafting of its opioid prescribing guidelines.

In fact, the witch hunt has gotten so bad, that we have a bipartisan majority of U.S. senators who have organized to dictate the quality of medical care for the 100 million Americans who suffer from chronic pain. (see “Senators Seek to Silence Pain Patients”)

If senators from both parties came together to speak out for or against any other hot-button issue, like gun control or abortion, there would be absolute mayhem. But, not only do people not challenge the senators’ insensitive, unilateral, and fascist attack on pain patients, we sit quietly in fear.

These lawmakers propose that pain patients should not even be allowed to give their opinions regarding pain control when filling out hospital satisfaction surveys. Now our freedom of speech is under attack, too?

Elimination of pain patients’ rights has become the new American genocide. Patients and doctors alike sit in fear, watching as we are stripped of our right to happiness, our right to adequate medical care, and our ability to treat our pain in the ways we and our doctors see fit. When will enough be enough?

On top of the inequality, there are often discrepancies in the overdose and addiction claims of the CDC, government, and media. There are blatant attempts to hide the sources, research, and financial motives of those involved in the anti-opioid hysteria. There is a significant lack of research and evidence to support this drastic upheaval of our healthcare. Still, no one speaks.

There are so many things that obviously don't add up. No one is asking the right questions and no one is challenging this shady behavior. For some time now, I have been pointing out that the media and government both continuously lump pain patients and addicts together, call our pain medication “drugs,” and lump our meds together with heroin.

This is not accidental. By brainwashing the public to believe that all pain patients are drug addicts, and that pain medicine and heroin are one in the same, they have created an atmosphere of fear. No one wants to sound like they're pro-heroin. No one wants to be seen enabling addicts to get their fix.

There is a desperate need for more mental healthcare and addiction treatment in this country. Instead of addressing this need, the government and media (both funded by the pharmaceutical companies that make the medications deemed to be the “preferred” treatments over opioids) have diabolically created this carefully planned, malignant strategy to eliminate pain patients by making them addicts instead of pain patients. They will make more money by forcing us into rehab and putting us on drugs that will ensure that they keep making far more money than pain medicines ever would, all while making people believe that it's all for our own good.

Many of these “preferred” medications have not been around long enough to determine their long-term safety. They have side effect profiles a mile long and they will only keep us sick; thereby making us lifelong pharmaceutical consumers. Anti-opioid and addiction special interest groups stand to benefit from all of this.

The few times pain patients have been included in the discussion, they are immediately treated like criminals. Boston’s NPR station recently put the onus on a patient to defend herself with questions like, “How is a doctor to know the difference between someone who is addicted and someone with chronic pain that needs to be treated?”

Since when do patients have to defend the reality of their illness? When did being a patient become a defendant? And, if that is the case, what happened to innocent until proven guilty? What happened to doctors (not government and media) determining what is best for their patients?

It is an absolute outrage that our own government officials are dismantling our constitutional and human rights. Yet the stigmas of chronic pain and pain medication run so deep in this country that we keep quiet, knowing it's wrong, but afraid to be lynched for our insubordination.

Our disabilities often prevent us from having the physical fortitude to organize, march, and protest. They are counting on that. Our bodies may be weak, but our minds are strong. Our voices are ONE HUNDRED MILLION STRONG! We need to face our fears and SPEAK UP!

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.

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.