A Recap of Rare Disease Week on Capitol Hill

By Barby Ingle, PNN Columnist

Last week was Rare Disease Week on Capitol Hill, and I was excited to join hundreds of patients, advocates and caregivers in Washington, DC to raise awareness about rare diseases.

I was once again chosen as the Arizona “team leader” by the EveryLife Foundation, and led our group in meetings with our Senators and Representatives. I handled logistics for the legislative conference, helped organize the strategy for the meetings and kept the group on task during our discussions.

The EveryLife Foundation is a science-based advocacy organization that works to bring lifesaving treatments to 30 million Americans with rare diseases. There are more than 7,000 rare diseases. The foundation’s focus is on educating and advocating for rare disease patients to ensure they are heard by policy makers in government and by healthcare organizations.

The week kicked off on Sunday with a cocktail reception and Rare Disease documentary screening at the Ronald Reagan Building. We spent Monday at a legislative conference, where we heard from industry lobbyists about important federal bills and learned how the National Institutes of Health (NIH) is researching new treatments for rare diseases.

On Tuesday we split up and went to scheduled meetings with our members of the House and Senate on Capitol Hill. This day of lobbying was for patients, caregivers, and patient advocacy groups only.

Patient and fellow advocate Mike Heil joined me and my husband Ken as we visited the offices of Sen. Kyrsten Sinema (D-AZ), Sen. Martha McSally (R-AZ) and Rep. Paul Gosar (R-AZ).


One of my favorite parts of the week was Wednesday, when there was a briefing by the Rare Disease Congressional Caucus at the Dirksen Senate Office Building. The caucus is a bipartisan group of over 100 senators and representatives that meets to pursue common legislative objectives to help rare disease patients. You don’t hear much about bipartisanship these days on Capitol Hill, but this group has been active since 2010.

The caucus meeting was followed by a reception that featured a collection of art from across the rare disease community. This event was designed to help educate Congress about rare diseases and to empower patients to express their pain through artwork.

Thursday was full of action as we gathered at the NIH headquarters in Bethesda, MD to mark the global observance of Rare Disease Day. The day featured multiple interactive panel discussions on rare disease research, patient registries and cancer research initiatives, with the theme being "no disease left behind, no patient left behind."

Other highlights included posters and exhibits by rare disease groups and researchers as well as artwork, videos and campus tours. Global Genes participants were encouraged to wear their favorite pair of jeans and to use the social media tag, #RDDNIH to help raise awareness.

This was my second time participating in Rare Disease Week on Capitol Hill. I hope you join me in person or online next year for Rare Disease Week 2020. For more information on the next event, visit the website of Rare Disease Legislative Advocates (RDLA).

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

More information about Barby can be found at her website. 

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

Now Is the Time to Advocate

By Barby Ingle, PNN Columnist

I have written many articles on patient advocacy and it is still one of the topics I am most asked about. Now through the first week of September is the perfect time to visit with your state legislators and congressional representatives. I have appointments with three coming up in the next few weeks myself.

They need to hear from their constituents. The need to learn about issues facing people who vote in their districts and state. They need to know who makes up the pain community so that they can better represent and REMEMBER us when it is time to vote on legislation that may help or hurt our access to proper and timely pain care.

How do you get an appointment? Look up the website for your legislator or congressman and request a meeting. Sometimes you can make an appointment directly through the website, but I believe the best way is to call and set it up, followed by a written request or confirmation of the appointment.

You may be scheduled with the lawmaker themselves or a staff member who assists them with a particular issue. In our case, it is usually the staffer who handles health or insurance issues.

These appointments can take place in Washington, DC or in your home state. The U.S. House (but not the Senate) is in recess until after Labor Day, so most representatives are in their districts campaigning for the midterm elections. Many are taking meetings and doing town halls.


When you call for a meeting, you may get voicemail. Leave a message! If you don’t get a return call in a few days, call again. If someone answers, call and ask to speak with the scheduler.

It’s impressive to friends, family and other pain community members when you actually follow through with a meeting. It is something that anyone can do, but few actually try. Most rely on others to make it to these meetings.

You need to focus on what you'll talk about before the meeting. If you get an appointment, dig in and study. Do your homework and research legislation so you can explain why you support or oppose it. Share your personal story in a highlight reel fashion. You might have a 20+ year story of living with chronic pain and illness, but you should get it down to no more than 2 minutes. Highlight the challenges you faced and where you are now in the chronic care process.

Make an Ask

The main purpose of your first meeting will be to familiarize yourself with your senator, representative or legislator and make a memorable connection. Stay on topic, stay timely and “make an ask” – ask them to do something specific for you.

These meetings typically last 15 to 20 minutes. Don’t bring a truck load of supporting materials. Discuss no more than 3 topics at the meeting and leave a one-page fact sheet for each topic. You want them to know that they can use you as a resource, so include a calling card with your contact information.

If you are asked about a fact that you don’t know the answer to, just say, “I don’t know.” It is better to be truthful than to make something up and risk losing credibility. You can always follow-up later with the information they seek.

You are there to make an ask, so set a reasonable deadline for them to respond to you with the answer. They may say right away they won’t support or oppose a bill and why. Don’t argue with them if they do. Use it as a teachable moment as to why you hope they will reconsider and how their decision will affect you and others like you in the pain community. If they haven’t taken a position on the issue in the past, it is not likely that they will commit to one in this meeting.

When you get home, always send a short thank you letter to the representative or staffer who was there. Also include any follow-up answers you promised. Remember, if you met with a staffer, they are there to filter out the messaging and bring back the best info they can to the representative.



If you do get an actual face-to-face chat with your senator or representative, you are lucky. In 2017, we were fortunate to get a meeting with Arizona Rep. Andy Biggs (pictured above).  A personal meeting like that demonstrates to lawmakers there is a constituency for chronic pain and illness that is active in their district and needs to be listened to.

After your first meeting, get ready for the next one. Stay in touch with the staffers and representatives, and when it comes time for them to act or vote, there is a better chance they will remember you and your story and do something that helps the pain community in a positive way.

Hearing directly from patients and caregivers goes a long way in helping us get access to proper and timely pain care. They need to know that we care, so they should care too.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain 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.

A Bad Bill That Won't Fight Opioid Addiction

(Editor’s note: Last month, PNN reported on the “Post-Surgical Injections as an Opioid Alternative Act,” one of dozens of bills Congress is considering to combat the opioid crisis. HR 5804 would raise Medicare’s reimbursement rate for epidurals and other spinal injections used to treat post-surgical pain. The bill – which was lobbied for by doctors who perform the procedures – has drawn little public scrutiny and was rushed through a congressional committee after one brief hearing.)

By Denise Molohon, Guest Columnist

Raising the reimbursement rate for post-surgical spinal injections would dramatically increase healthcare costs and disability rates. This is based on historical research and medical evidence.

A harmful procedure should never be considered a “standard of care” by the medical profession. Yet that is what has happened with epidural steroid injections (ESIs) and Congress is going along with it under the guise of preventing opioid addiction.

“In the United States, more than ten million epidural steroid injections are delivered each year, a number that makes them the bread and butter of interventional pain management practices,” wrote Cathryn Jakobson Ramin, author of Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery.” 

The National Health and Medical Research Council of Australia warned in 1994 that the risk of a dural puncture of the spinal cord during an injection was at least 5 percent. It also cautioned that “particular care must be taken if attempting an epidural injection in patients previously treated by spinal surgery.”

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In such cases, an epidural steroid injection (ESI) carries a very high risk of direct entry into the subarachnoid space, which can have catastrophic consequences to a patient, including the development of Adhesive Arachnoiditis, a chronic, painful and disabling inflammation of spinal nerves. I live with that condition, along with a growing number of other patients.

“The incidence of arachnoiditis has risen about 400% in the past decade,” says Forest Tennant, MD, Editor Emeritus of Practical Pain Management.

Between 2000 and 2011, there was a staggering 665% increase in the rate of lumbar and sacral epidural injections among Medicare beneficiaries. The data also show that there were enormous increases in spinal injections performed by physical medicine and rehabilitation specialists.

“We are doing too many of these, and many of those don’t meet the proper criteria,” Dr. Laxmaiah Manchikanti told The New York Times in 2012.  Manchikanti runs a pain clinic in Paducah, KY and is chairman of the American Society of Interventional Pain Physicians – which lobbied for HR 5804 and gave campaign contributions to its sponsors. He told The Times about 20 percent of doctors who perform ESIs are not adequately trained.

The growing use of spinal injections has not resulted in better care. Dr. Richard Deyo, a professor of family medicine at Oregon Health and Science University, told the The Times that “people with back pain are reporting more functional limitations and work limitation, rather than less.”

HR 5804 is more bad policy piling on top of an already failed campaign of opioid legislation -- much of it based on misinformation provided by the CDC -- that will perpetuate the tsunami of needless pain and overdose deaths. 

It needs to stop. Today. 

When profit is one of the major motivating factors of those seeking new legislation, those creating the legislation and those lobbying for it need to be questioned. Profitability should never play a factor in any treatment plan. However, it now seems to dominate the American healthcare system from diagnosis to testing to medication. 

This needs to change.

Medicine needs to be removed from the hands of lobbyists, PAC’s, and politicians and put back into the hands of the personal physician and his or her patient. It should be as individualized and unique as the medical needs of each patient. 

It truly is that simple. 


Denise Molohon was disabled with Adhesive Arachnoiditis after multiple spinal surgeries.

Denise is a patient advocate for ASAP, the Arachnoiditis Society for Awareness & Prevention. She and her family live in Indiana.

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.

Sessions Seeks to End Protection for Medical Marijuana

By Ellen Lenox Smith, Columnist

If you’re one of the millions of Americans who uses medical marijuana, you need to be aware of something going on in Congress that could affect your legal right to use cannabis.  

A few months ago, Attorney General Jeff Sessions wrote a letter to congressional leaders urging them to ditch an amendment that effectively prevents the Department of Justice from investigating or prosecuting cannabis users or sellers in states where medical marijuana is legal.

The Rohrabacher-Farr amendment first became law in 2014. It forbids the Justice Department from using any funds to prevent states from “implementing their own State laws that authorize the use, distribution, possession, or cultivation of medical marijuana.” Last year the Ninth Circuit Court of Appeals ruled that the provision protects marijuana growers, patients and dispensaries who are complying with medical marijuana laws in 29 states and the District of Columbia.

Those of us involved in our own state's medical marijuana programs felt safe and legally protected – until the Attorney General wrote his letter.



Although the amendment has been attached to spending bills for years, Sessions wants to make sure it’s not in appropriations legislation for 2018. He stated in his letter that the court ruling gives dangerous criminals a loophole to protect themselves from prosecution. 

Sessions says the country is “in the midst of an historic drug epidemic and potentially long-term uptick in violent crime,” and the Justice Department “must be in a position to use all laws available to combat the transnational drug organizations and dangerous drug traffickers who threaten American lives.” 

Sessions appears to be deliberately equating medical marijuana use with the so-called opioid epidemic. But an emerging tide of research indicates otherwise. Opioid overdoses have actually declined in states where marijuana is legal and many pain patients prefer cannabis over opioid medication.

John Hudak of the Brookings Institution called Session’s letter a "scare tactic” that just might work. He told The Washington Post that Sessions "could appeal to rank-and-file members or to committee chairs in Congress in ways that could threaten the future of this Amendment."

So far Session’s arguments haven’t gained much traction in the U.S. Senate. In July, the Senate Appropriations Committee voted to keep the Rohrabacher–Farr  amendment in the appropriations bill for 2018.

“The federal government can't investigate everything and shouldn’t, and I don’t want them pursuing medical marijuana patients who are following state law,” Vermont Sen. Patrick Leahy (D) told The Hill. “We have more important things for the Department of Justice to do than tracking down doctors or epileptics using medical marijuana legally in their state."

But the Senate and House must work out a compromise, and it’s unclear how the House will vote. Last month the House Committee on Rules voted to remove the amendment from the House appropriations bill after Republican leaders said it was too “divisive.”

In the past, there has been broad bipartisan support for the amendment in Congress. One of its sponsors, California Rep. Dana Rohrabacher, is a conservative Republican who has long supported marijuana legalization. Without his amendment, Rohrabacher says Congress would be undermining the rights of states to make their own laws.

“The status quo for four years has been the federal government will not interfere because the Department of Justice is not permitted to use its resources to supersede a state that has legalized the medical use of marijuana,” Rohrabacher told his colleagues.

Many Americans agree. Support for medical marijuana is at an all-time high, reaching as much as 94 percent in one poll. 

Where do you stand? Where does your congressman? Should medical marijuana be protected from federal prosecution in states where it is legal?

I, for one, depend on cannabis for life. And will do all I can to let my voice be heard.

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Ellen Lenox Smith lives with Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their 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.

A Pained Life: Change in Pain Care Policy Overdue

By Carol Levy, Columnist

In 2003, the National Pain Care Policy Act was first introduced in the U.S. Congress, calling for “adequate pain care research, education, and treatment as national public health priorities.”

At the time, information about chronic pain and the effect it has on lost productivity and economy was important enough that Rep. Mike Rogers (R-Michigan) wanted to try and do something about it.

While the House approved his bill, the Senate refused to take any action. Three more times it was introduced. Each time the House passed it and the Senate wouldn’t even consider it.

In the last few years there has been the gigantic hue and cry about the “opioid epidemic.” More often than not, the chronic pain community is named as culprit number one.

Just imagine if the Senate had listened in 2003 when Rogers first introduced his legislation.

Nearly 13 years have passed. How many new drugs? How many new treatments and procedures might have been developed by now? Would opioids still be one of the first weapons doctors arm their patients with? Would they still be telling patients, “You just need to learn to live with it.”

I often hear this from many in the pain community: “My doctor will not continue giving me the narcotic he has had me on for years. He no longer commiserates with me and says he will do all he can to help. Now he says ‘Sorry, I have decided to no longer write those prescriptions.’”

The patient looks at him, beseechingly. “What am I supposed to do? Do you have anything else to give me, to do for me? Please.”

He shakes his head, maybe ruefully, maybe not. “Sorry. Nothing else I can do for you.”

Many of us know the next step personally. We call other physicians’ offices. “Are you accepting new patients?” Too often the answer is no.

If they say yes and you add, “I am looking for a doctor to prescribe medication for my chronic pain,” the door is slammed shut in our ear. “We do not take patients who want narcotics.”

Now we are seen as a drug seeker. All because we want to stop or at the least reduce the pain.

If we were diabetic and said, “I am looking for a doctor to prescribe my insulin,” the reception would most probably be quite different. At worst they’d say, “The doctor will decide if that's right for you or if a different form of treatment is better.”

Patients should not have to search high and low for a doctor to treat them. And a patient saying upfront what they feel they need is not a sign they are fakers, drug seekers or malingerers.

I get it. When a patient says they want oxycodone, hydrocodone or Vicodin, I can understand it being heard as “I want opiates.” Instead of a discussion about working together to figure out what to do, it is easier to dismiss the patient.

When the Affordable Care Act (ACA) passed, it included amendments that were part of the National Pain Care Policy Act of 2003.

President Obama recently said, “If we go to doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem.”

It is wonderful that he recognizes this. But it is way past time to see action on the ACA's call to arms against chronic pain.

As it now stands, many in Congress want to become the third person in the consulting room, trying to proscribe what doctors prescribe if it is in the form of an opioid.

Research and development of new treatments -- including non-opioid drugs -- is what we have needed and continue to need. Opioids should be the last “go to” measure, not the first or only one.

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.

Congress Investigating CDC’s Opioid Guidelines

By Pat Anson, Editor

A congressional committee has launched an investigation into efforts by the Centers for Disease Control and Prevention (CDC) to develop new guidelines for the prescribing of opioid pain medication. The controversial draft guidelines discourage primary care physicians from prescribing opioids for chronic pain. As many as 11 million Americans take opioids daily for long term, chronic pain.

In a letter to CDC director Thomas Frieden, the chairman of the House Committee on Oversight and Government Reform questioned whether the agency broke federal law by appointing a biased advisory panel and refusing to disclose the identities of its members. Rep. Jason Chaffetz (R-Utah) asked Frieden to supply documents and information about the guidelines process “as soon as possible.”

At issue is the “Core Expert Group,” a panel composed of 17 members, most of them health researchers, state regulators and addiction treatment specialists. Although the CDC never publicly disclosed who was on the panel, their identities were leaked to Pain News Network and other websites. Critics charged that some members had conflicts of interests and strong biases against opioids. No patients or active pain management physicians are on the panel.

“Some groups have raised concern that the proposed guidelines may be insufficient to treat those suffering from chronic pain,” wrote Rep. Jason Chaffetz (R-Utah).  “We expect CDC’s guidelines drafting process to seek an appropriate balance between the risk of addiction and the need to address chronic pain. The CDC has utilized a ‘Core Expert Group’ in the drafting and development of opioid prescribing guidelines, raising questions as to whether CDC is complying with FACA (Federal Advisory Committee Act).”

Chaffetz’s letter was co-signed by five other committee members; Rep. Elijah Cummings (D- Maryland), Rep. Jim Jordan (R-Ohio), Rep. Matt Cartwright (D-Pennsylvania), Rep. Mark Meadows (R-North Carolina), and Rep. Gerald Connolly (D-Virginia).

Two members of the Core Expert Group are Jane Ballantyne, MD, and Gary Franklin, MD, who are the President and Vice-President, respectively, of Physicians for Responsible Opioid Prescribing (PROP), an advocacy group funded by Phoenix House, which runs a chain of addiction treatment centers.

Ballantyne and Franklin, who have been vocal critics of opioid prescribing, played key roles in the development of opioid regulations in Washington State, which has some of the toughest prescribing laws in the nation.

Ballantyne has served as a paid consultant to a law firm that is suing pharmaceutical companies over their opioid marketing practices. She also recently came under fire for co-authoring an article in the New England Journal of Medicine that said reducing pain intensity should not be the goal of doctors that treat chronic pain.

In all, five PROP board members are advising the CDC in different capacities, including its founder, Andrew Kolodny, MD, who has called opioid pain relievers “heroin pills.”   

Another member of the Core Expert Group is Lewis Nelson, MD, an emergency physician and toxicologist at New York University Langone Medical Center. Nelson has also compared prescription opioids to heroin and said the risks of taking them outweigh the benefits.

"As a civilization we somehow managed to survive for 50,000 years without OxyContin and I think we will continue to survive," Nelson recently told the Associated Press.

In his letter to Frieden, Chaffetz asked the CDC to provide all documents related to the selection of the Core Expert Group, as well as any documentation related to their meetings or advice they gave to the agency. They asked Frieden to provide the information by January 8th.

"CDC has received the letter and is complying with the request," a spokesperson for the agency told PNN.

The CDC recently announced it would delay implementing the guidelines, reopen a public comment period, and have the guidelines reviewed by its scientific advisory committee. As Pain News Network has reported, the agency also said the Core Expert Group and other outside advisers are expected to continue advising the CDC. 

Fed Panel 'Appalled' by Guidelines

Some of the sharpest criticism of the CDC has come from officials in other federal agencies, such as the Food and Drug Administration, which normally plays a lead role in setting guidelines for prescription drugs.

“I think we need to recognize that CDC wants to substantially limit opioid prescribing. Period,” said Sharon Hertz, director of the FDA’s Division of Anesthesia, Analgesia and Addiction Products, at a recent meeting of a federal pain research panel.

Hertz said the evidence cited to support the guidelines was “low to very low and that's a problem." She also told the National Institute of Health’s Interagency Pain Research Coordinating Committee that the FDA “did have an opportunity to look at the product and comment,” but otherwise was not involved in its development.

Other panel members expressed alarm that, although “voluntary” and meant for primary care physicians, the guidelines could quickly become policy throughout the country.

“I see how our state health department looks at CDC. They really take direction from CDC.  CDC has a great name for good reason. They’ve done incredibly good work in many areas,” one panel member said. “And I have to say this has really diminished my respect for CDC. I have to say that this process was horrible. I’m appalled, appalled at the process CDC used to develop these in secrecy, not allowing input from the pain community and pain physicians.”

“I think we cannot for one minute be naïve enough to imagine that these will be seen as recommendations and that state medical societies, boards of healing arts, legislators, will not jump all over this,” said Myra Christopher, of the Center for Practical Bioethics.

"This is a ridiculous recommendation from my perspective. Very low quality of evidence, yet a strong recommendation. How do you possibly do that?” asked Richard Ricciardi, PhD, of the Agency for Healthcare Research and Quality.

I would be remiss and I’m certain so would many of my government colleagues if I didn’t go back to my director and say there’s a report coming out of the CDC that has very low quality of evidence and there’s a strong recommendation. That’s an embarrassment to the government.”

The CDC’s own briefing papers make clear that the agency’s ultimate goal is for the guidelines to be widely adopted.

“Efforts are required to disseminate the guideline and achieve widespread adoption and implementation of the recommendations in clinical settings,” the agency says in documents obtained by Pain News Network.  “CDC is dedicated to translating this guideline into user-friendly materials for distribution and use by health systems, medical professional societies, insurers, public health departments, health information technology developers, and providers, and engaging in dissemination efforts.”

Even though the guidelines may be several months away from being finalized, Congress last week passed and President Obama signed into law a federal spending bill that requires the Veterans Administration to adopt the CDC’s guidelines as official policy when VA doctors treat veterans suffering from chronic pain.

7 Things You Should Tell Congress About Pain

By Janice Reynolds, Guest Columnist

With all the shock, discussion, and fear the CDC’s so-called “guidelines” have raised, another threat has slipped past us.  That threat is legislative involvement in pain medication, as well as the belief that addiction to prescription medication is out of control and the Food and Drug Administration is derelict in its duties.

For some politicians, pain is not bad enough to need opioids unless you are dying of terminal cancer.

A group of U.S. Senators wants to investigate the FDA for approving OxyContin for children. Recently, presidential candidate Hillary Clinton was quoted as saying, “We have got to take another look at the ease with which the opioids are being prescribed.  I am very concerned that the FDA has approved a form of opioids for children. And I find that absolutely incomprehensible." 

I gather they would rather sick children be left to suffer.

What is going on?  Addiction to prescription medications is declining due to costs and abuse deterrent formulas.  The approval of OxyContin for children should not have raised concerns.  Remember all the panic and hysteria with the approval of Zohydro?  It has been over a year without problems, not that anyone who cried “wolf” about Zohydro has followed up on that.

I believe it is imperative that providers who understand good pain management join with pain sufferers and write to our Senators, Representatives, and Hillary Clinton -- not only to dispute the CDC, but to tell our stories.  We are a significant number and understand the truth.

People in pain are millions strong and should be having a bigger impact.   Everyone needs to recognize that chronic pain covers hundreds of pain syndromes, and one treatment does not work for everyone.

There has been quite a lot in the last year belittling people with pain and spreading misinformation – including one horrible article with the headline “Commentary: Exaggerating our pain.”

The myth that there is no evidence to support the safe use of opioids is being constantly reinforced. It is so very important we speak up and educate those in government who could potentially make our lives even worse.  I believe it is imperative that people with pain and providers (who haven’t sipped the Kool-Aid) write and tell our Congressmen and women what the truth actually is.

Here are seven talking points: 

1) Children recovering from surgery were already being prescribed OxyContin off label.   There is no evidence to support claims that the FDA’s approval for pediatric use increases addiction.  Do they believe that children should suffer with pain?

2) With abuse deterrent opioids and higher costs, a rapid shift to heroin and other street drugs is taking place. So where does the prescription drug “epidemic” come from and where is the evidence?

3). The CDC’s alarmist attitude and claims that addiction is caused by prescription opioids is based on the opinions of addiction treatment experts and others with no experience in pain management.

4) 100 million people living with pain should have evoked some type of compassion from the CDC. After all, addiction and obesity are treated as “epidemics.”  One would have to believe the CDC is reacting with prejudice. I can’t recall the CDC ever saying anything about people with pain except in regards to addiction.

5) Those in leadership as well as others need to hear the stories of people with pain; what has caused your pain, what has happened to you individually, and how it affects  your family.  They need to know how hard it is get medication, difficulties with pharmacies, problems finding a provider, the harmful consequences of failed urine drugs tests that are often inaccurate, and the providers who stop caring for patients because they’re worried about the DEA and prosecution. 

6) They need to understand that financial issues are frequently a block to good pain management. Insurance often doesn’t pay or pays inadequately for medication and non-pharmacological therapies that actually work for patients.

7) They need to be asked why they are listening only to the CDC and advocacy groups like Physicians for Responsible Opioid Prescribing (PROP) instead of experts in pain management.

Please take the time to write. We need for these stories to be told – not by getting angry – but by presenting the facts of how living with pain affects you and how the myths about taking opioids for pain affects you.

When you write an aide may call you, so have a brief list of talking points handy. It drives them crazy when you know what you are talking about and can refute their point of view.

As a pain management nurse, it infuriates me that wrong information is being given priority. As someone who has persistent pain and has a good pain plan that includes opioids, I am frightened every day that politicians and regulators will destroy my life.  Without opioids my pain would be unbearable.

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.