Half of Patients Have Trouble Getting Pain Meds

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By Pat Anson, Editor

A new survey of chronic pain patients found that over half – 56 percent -- have experienced problems getting access to opioid pain medication, either from a pharmacy or their own doctor. Nearly half of the patients surveyed also said they have contemplated suicide.

“Access continues to be a problem and a growing problem for patients living with chronic pain,” said Jeff Dayno, MD, chief medical officer for Egalet, a pharmaceutical company that conducted the survey along with the American Chronic Pain Association (ACPA).

The online survey of over 1,000 patients was conducted in 2015, before guidelines were issued by the Centers for Disease Control and Prevention that discourage primary care physician from prescribing opioids for chronic pain. Although the guidelines are voluntary, they’ve had a chilling effect on many doctors and pharmacists since their release in March.  

“General practitioners who don’t have as much experience are having somewhat of a knee jerk reaction. Either they’re not prescribing opioids at all or taking a very cautious approach,” said Dayno.

“The broader medical community is backing away from the more effective type of pain medications and opioids specifically, even at the pharmacy level in terms of stocking them and having them available.”

Nearly two-thirds of patients (63%) said their pharmacy carries only a limited supply of pain medication. And nearly four out of ten patients (39%) said their physician no longer prescribes pain medication.

“Since the push to combat prescription medication abuse has risen, so have the number of calls we have received from individuals expressing their frustration about accessing their prescription medications,” said Penney Cowan, founder of the ACPA. “The study found that access really is an issue for individuals; they struggle to find doctors who are willing to treat them, and pharmacies that stock their medication.

“For individuals living with chronic pain, access to medication is vital to functioning in their everyday lives. Doctors would not withhold prescriptions from patients with other medical conditions such as diabetes or heart disease. What’s startling is the high percentage of individuals who have contemplated suicide.”

Forty-seven percent of the survey respondents said they’ve had thoughts of suicide.

“The statistic around patients contemplating suicide, we’ve seen numbers like that in the literature before. And that’s a very concerning and frightening aspect of the impact of limited access to effective pain medications,” said Dayno, who believes the number of patients complaining about access would be even higher if the survey was conducted today.

When asked by Pain News Network if he thought the CDC even considered suicides and other negative consequences on patients when it was drafting the guidelines, Dayno said no.

“I don’t think that dimension was clearly considered in the guidelines. I think it was much more of an evidence based, clinical approach on the pain management side. But the impact of potential barriers to access to these medications was not factored in to that assessment as part of the CDC guidelines,” he said.

A noted expert on pain management says he’s also seen “anecdotal reports” of primary care physicians and pain management specialists dumping pain patients since the CDC guidelines came out.

“I think some doctors are increasingly uncomfortable with continuing to prescribe what has been a higher dose of opioids, uncomfortable with the scrutiny that they’ve gotten, and as a consequence they are discharging patients from clinics, urging them to find care elsewhere,” said Sean Mackey, MD, Chief of the Division of Pain Medicine at Stanford University.

 

Pain Protestors: 5 Simple Ways to Stand Up

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By Pat Akerberg, Columnist

It frustrates me that there’s such a huge gap between what I’d like to do and what I can actually do to protest how pain care has gone amok. 

The truth is I can’t talk without triggering unmerciful pain.  I can’t make lots of phone calls or present to audiences or groups anymore.  I can’t march, run or walk for any distance now.  Thanks to debilitating chronic pain, I can’t reliably commit my energies to much more than the daily challenges I face. 

Maybe you’re in the same place too? 

As discouraged underdogs, we want to change the lopsided fervor that’s trumping our critical need for safe and humane advancements in pain care.

I wish we could lead the charge, but in reality our compromised bodies often can’t keep up with what that requires. Starting from scratch is tempting, but that’s at cross-purposes with our limited capacities.    

Then I remember “the butterfly effect,” born out of physics and chaos theory.  It refers to a cumulatively large effect that a very small force may produce in a larger system over a period of time.  It postulates how the fluttering of a butterfly's wings in one part of the world may set off currents that will grow into a hurricane in another part of it.

We can’t predict or know when there will be enough pressure, conspiring events or cumulative conditions to bring about the butterfly effect for us.  But progress requires active involvement.

We have strength in numbers, but some patient advocates have called out pain sufferers, questioning where our support and voices of protest have been thus far.  That’s a fairly untapped opportunity.

If we want pain reform, it will take a critical mass of us calling for it.  Pragmatically, we can help build momentum and heighten the pressure for change quicker by supporting and working with current pain advocacy groups.

We have literally dozens of advocacy organizations, but ironically they lack organization.  Each represents a piece of the broader issue -- yet their efforts haven’t coalesced enough around a single goal or goals to gain substantial traction.

If you’re wondering what part you can play or where to put your limited energies, let’s look at some current opportunities.

Step #1

The oldest patient advocacy group, the American Chronic Pain Association, had a seat on a CDC advisory committee when the opioid prescribing guidelines were created.  But somehow that opportunity for active influence was reduced to a complicit check the box activity.

What can we do to call for better representation from such pain advocacy groups?  The well articulated comments that we write among ourselves could be leveraged to that end.  Copy, paste and send them to all national pain advocacy groups, starting with ACPA. Many of these organizations and their e-mail addresses are available by clicking here.  

Get involved.  Raise your concerns.  Urge all of their leaders to rally behind one unifying message for impact.  Ask them to recruit a spokesperson to give pain a face/voice (celebrity, athlete, or public/professional figure), devise ramped-up media and funding strategies, and enlist savvy lobbyists and lawyers.

If each of us would send out 5 letters, e-mails, or make 5 phone calls a week to a different advocacy group each week, we’d reach them all in just 8 weeks. 

Step #2

Have you heard of the LifeBOAT Act? Its legislation that would tax opioid pain medications, introduced by Sen. Joe Manchin (D) of West Virginia, and co-sponsored by Democratic Senators Amy Klobuchar of Minnesota, Jeanne Shaheen of New Hampshire, Heidi Heitkamp of North Dakota, and Tammy Baldwin of Wisconsin, along with one independent, Angus King of Maine.

The legislation is a reverse Robin Hood version of robbery.  Lacking conscience, the LifeBOAT Act would take money from pain patients by punishing them for their medical misfortune.  In turn, an estimated $2 billion of our tax dollars would be given to favored addiction treatment centers to treat opioid addicts.

If you feel strongly about the injustice of this tax, email or call the senators’ offices with your reasoned, opposing comments:

Step #3

The American Medical Association (AMA) recently decided to pass the hot potato by voting in favor of efforts to remove pain as a vital sign in professional medical standards, as well as disconnecting patient satisfaction scores from questions involving pain care in hospitals.

If this setback for pain sufferers pushes your buttons, you can call the AMA at (800) 621-8335 and let them know how you fell.

Step #4

September is National Pain Month, a good time to contact your local media and get them to cover our side of the pain story.  Press kits are readily available from some advocacy groups for this purpose.

Step #5

Our small efforts can quicken the overall cumulative effect, while giving us a personal and purposeful outlet.  A few more examples include:

  • Join advocacy and social media groups (like Facebook) to understand their missions and volunteer for their initiatives
  • Urge advocacy groups to get more media coverage of our side of the pain/opioid story
  • Endorsing petitions sent out on our behalf
  • Spreading the word and soliciting the help of family and friends

The Scottish writer W. H. Murray wrote this about the power of commitment: 

“Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation) there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred.”

By making a personal commitment on some level, each of us can contribute in ways that our physical limitations will allow. 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Senator Alleges Conflict of Interest in Fed Pain Panel

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By Pat Anson, Editor

An influential U.S. senator is raising questions about possible conflicts of interest on a federal panel that was highly critical of the CDC’s controversial opioid prescribing guidelines.

“I was alarmed to read of efforts by the members of the Interagency Pain Research Coordinating Committee (IPRCC) to weaken efforts underway at the Centers for Disease Control and Prevention (CDC) to develop guidance on opioid prescribing practices,” wrote Oregon Sen. Ron Wyden (D) in a letter sent to Health and Human Services Secretary Sylvia Burwell.

As Pain News Network has reported, several members of the IPRCC said the guidelines were “ridiculous” and “an embarrassment to the government” at a December meeting.

“Several non-Federal IPRCC members, their organizations, or both, appear to be recipients of funding from major pharmaceutical companies that manufacture opioids or related products at levels that raise serious concerns regarding the potential for conflicts of interest,” wrote Wyden. “These financial and professional relationships raise serious concerns about the objectivity of the panel’s members that deserve additional review.”

december, 2015 meeting of iprcc.

december, 2015 meeting of iprcc.

Wyden mentioned several of the panel members by name, including Myra Christopher and Dr. Richard Payne of the Center for Practical Bioethics, Penney Cowan of the American Chronic Pain Association and Cindy Steinberg of the U.S. Pain Foundation. All three non-profit organizations get a substantial portion of their funding from pharmaceutical companies, including Purdue Pharma, the manufacturer of OxyContin. Purdue gave over $100,000 to U.S. Pain Foundation in 2014, according to Wyden.

“I do not and have never been paid by a pharmaceutical company,” said Steinberg, who became a patient advocate after she suffered a serious back injury in an accident. Steinberg, who is National Policy Director for U.S. Pain Foundation, currently receives a small stipend of about $8,000 a year.

“I am fortunate in that my husband works to supports us.  I do this work despite my daily, debilitating chronic pain, often needing to lie flat in meetings to control the pain and lay across two plane seats to travel because I am passionate about improving pain care in this country,” Steinberg said in an email to Pain News Network.

“If anyone watches the video of the IPRCC meeting they will see that they had to bring in a special small sofa for me to lie on every hour so that I could participate. I am proud to do this work and am honored to represent the voice of millions of disempowered Americans who suffer from the pernicious disease of chronic pain and desperately need more and better treatment options."

Penney Cowan, another member of the federal panel mentioned by Wyden, also serves on the CDC “workgroup” that recently endorsed the agency’s recommended guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.  

“When treating a person with pain, a health care provider needs to determine what is best for that individual based on physical examination, test results and what is important to the individual. The recommendations seem very clear on that point,” Cowan wrote in an email to PNN. “The American Chronic Pain Association advocates for a balanced approach to pain management - that means that all therapies such as PT (physical therapy), counseling, biofeedback and stress management, OT (occupational therapy), nutritional guidance and more should be available and used based on their appropriateness for each individual.”

Wyden’s letter does not mention that some IPRCC members who were most critical of the CDC guidelines are federal employees of the Food and Drug Administration and the Agency for Healthcare Research and Quality (AHRQ), who as government workers are not allowed to accept financial contributions.

The senator’s letter and an Associated Press story about it also fail to mention that the CDC itself has a foundation that accepts funding from healthcare companies such as Abbott Laboratories, Amgen, Medtronic, Johnson & Johnson, Merck, Quest Diagnostics and Pfizer,  companies which stand to benefit from the CDC guidelines because they offer non-opioid treatments or tests. The CDC Foundation accepted over $157 million from donors last year.  

Up to 11 million Americans use opioids daily to treat their chronic. A survey of over 2,000 pain patients by Pain News Network and the Power of Pain Foundation found that many fear losing access to opioid pain medication if the guidelines are adopted.