AARP Should Stop Blaming Pain Patients for the Opioid Crisis

By Carol Levy

Toast and jam. Cake and coffee. Peanut butter and jelly. Pain patients and the opioid crisis.

One of these things is not like the others. But to most people, they all go together. Even when research shows little correlation between opioid prescriptions and overdose deaths.

We’ve been hearing that same old tired narrative for years, often from “experts” who speak with absolute certainty.

“Two major facts can no longer be questioned. First, opioid analgesics are widely diverted and improperly used, and the widespread use of the drugs has resulted in a national epidemic of opioid overdose deaths and addictions,” Nora Volkow, MD, Director of the National Institute on Drug Abuse, and Thomas McLellan, PhD, founder of the Treatment Research Institute and a scientific advisor to Shatterproof, wrote in a joint op/ed in The New England Journal of Medicine in 2016.

“Second, the major source of diverted opioids is physician prescriptions. For these reasons, physicians and medical associations have begun questioning prescribing practices for opioids, particularly as they relate to the management of chronic pain.”

We now know that prescription opioids play a minor role in the overdose crisis and that only about three-tenths of 1% are actually diverted. Illicit fentanyl and other street drugs are responsible for the vast majority of overdose deaths, not pain medication.

But the same tired and misinformed narrative continues, with patients who need opioids paying the price when their doses are reduced or taken away.

Recently, the American Association of Retired Persons released an AARP bulletin, with the main headline being “The War on Chronic Pain.” Wow!  I was excited. Maybe some new information that I can use?

My heart sank as I read the article and quickly came upon these words: “Our attempts to treat chronic pain with medication have led to an opioid abuse epidemic so severe that overdoses are now among the leading causes of death for adults ages 50 to 70. “

The stereotype wins again. Prescription opioids caused the crisis.

I was curious to see what else AARP had to say about pain management and found several articles over the years with a glaringly obvious bias against opioids.

“Americans over 50 are using narcotic pain pills in surprisingly high numbers, and many are becoming addicted,” a 2017 AARP article warned. “A well-meant treatment for knee surgery or chronic back troubles is often the path to a deadly outcome.”

The article went on to claim that older Americans had become “new opioid dealers” who fueled the opioid crisis by “selling their prescription painkillers to drug pushers.”

A 2019 AARP article took a more nuanced approach to pain, claiming that “science was homing in on better ways to treat it,” such as non-opioid drugs, exercise and cognitive therapy.

“If the opioid crisis has provided an excellent example of how not to treat chronic pain, advances in brain science are leading to a fuller understanding of how to more safely find solutions,” AARP said.

Five years later, science has brought us no real solutions. Opioids are still the most potent and reliable medications for pain. For patients in severe pain, they are often the only treatment that works.

The sad part is, if AARP had simply asked the American Medical Association, they would have found that prescription opioids are not the main cause of overdoses and deaths.

In 2021, the AMA reported that opioid prescriptions had fallen by over 44%, yet drug overdoses and deaths were still rising. “The nation’s drug overdose and death epidemic has never just been about prescription opioids,” said then-AMA President Gerald Harmon, MD.

In a 2023 report, the AMA warned again that “reductions in opioid prescribing have not led to reductions in drug-related mortality.”

Why is that not worth including in AARP’s latest sensational reporting on the opioid crisis?

I read this line the other day: “There is no word for infinite pain.” That rings very true for me, probably for many of us. Chronic pain often does not end. We may have a diagnosis, some condition or disorder that causes pain, but there is no good word for pain that is unending and unrelenting.

AARP’s continuing portrayal of many seniors as addicts or drug dealers pushing “narcotic pain pills” is not helpful. Repeatedly labeling us like that has had devastating consequences on pain patients around the country. 

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. 

Dear AARP: Stop Picking on Pain Patients

(Editor’s Note: Last year PNN columnist Rochelle Odell wrote an article critical of the American Association of Retired Persons (AARP) for publishing a special report entitled “The Opioid Menace.” The report claimed that many older Americans had become “new opioid dealers” who were fueling the opioid crisis by “selling their prescription painkillers to drug pushers.”

AARP recently published a new bulletin, which focuses on how scammers are bilking Medicare for $60 billion annually. Once again, AARP claims that Medicare fraud "puts deadly pills on the street" and helps fuel the opioid crisis. In response, Rochelle wrote this open letter to AARP’s editors.)

Dear AARP Editors,

I received the AARP Bulletin and at first found your cover story on Medicare fraud interesting. Fraud is a major problem that will need patients, physicians and law enforcement to resolve. It causes healthcare costs to rise, which many of us on Social Security and fixed incomes can’t afford to pay.

As I got towards the end of the bulletin, my anger began to rise as I read "The Opioid-Medicare Connection." You claim that “shady doctors are writing bogus prescriptions for opioid painkillers” using stolen Medicare ID numbers and that “the pills are then sold on the street for huge profits.”

“The practice is shockingly common, and the impact is severe. For Medicare, it means covering the cost of countless millions of high-priced pills that never should have been prescribed. At the same time, prescription opioids are responsible for an estimated 95 overdose deaths a day in the United States,” the article claims, without ever citing a source for that information. 

It brought me back to last summer when AARP published "The Opioid Menace." Why is AARP constantly attacking opioid pain medication? Why do you continually write misleading information about opioids? Could it be dollar motivated? 

Then I read about AARP's survey on medical marijuana, which found that a majority of older Americans “think marijuana is effective for pain relief and should be available to patients with a doctor’s recommendation.”  I have to disagree with the survey findings. There are many of us who have tried medical cannabis and received zero benefit. It did nothing for my pain. 

Then it dawned on me, of course insurance providers such as AARP would like more patients to use cannabis. As it becomes harder for us to get prescription opioids, many pain patients are turning to cannabis, a treatment that AARP and other insurers don't have to pay for. How much will that fatten your bottom line?

I find it hard to believe stolen Medicare ID numbers play that big of a role in the opioid crisis. Prescriptions for opioid medication are tracked more than ever, with doctors, pharmacists and insurers having instant access to databases to see just how many prescriptions a patient is getting.

I have been on Medicare since 1997 due to becoming disabled by Complex Regional Pain Syndrome (CRPS). There has never been a time that I did not have to present a picture ID when picking up an opioid prescription. And if I was unable to pick them up myself, a friend or relative had to present my ID confirming it was indeed for me, along with my current address.

Please explain how the "shady doctors" you referred to in your article are able to pull off this "shockingly common" fraud and make “huge profits.” As in last year's Opioid Menace article, AARP uses minimal references to support these claims. It was interesting you referenced only one physician who did this, only one. 

Medicare just published a new rule starting in 2019, which impose new limits on high dose opioids and requires “high risk” patients to see a specific physician and use a specific pharmacy. Think of the money you can save now. More patients paying out of pocket for medical cannabis and prescription opioids being reduced or stopped. 

Whatever happened to AARP being there for us older Americans?

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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.

AARP’s ‘Opioid Menace’ a Disservice to Pain Patients

(Editor’s note: The American Association of Retired Persons (AARP) recently published a series of special reports entitled "The Opioid Menace!"

The series focuses on the abuse of pain medication, claiming that many older Americans have become “new opioid dealers” who are fueling the opioid crisis by “selling their prescription painkillers to drug pushers.” Doctors are also blamed for the “sin of overprescription.”

PNN reader Rochelle Odell was upset about the lack of balance in the series, and sent this letter to AARP.)

Dear AARP Editor:

I have been a member of AARP since I turned 50, due to disability.  I suffer from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD).  Like many long term CRPS patients, my spine is a mess.

I was appalled when I read your article on "The Opioid Menace.” Excuse me, but what a crock of you know what. Your organization has done a great disservice to the tens of millions of Americans who live with chronic pain, including many who are over the age of 50.

Did your reporters contact any of the major pain organizations? I doubt it, from reading your article. I am going to have to spend some time researching the correct numbers, but I believe opioid addiction among chronic/intractable pain patients is less than 5%, a far lower number than you referenced.

When the CDC came out with their opioid guidelines in 2016, which by the way were just that -- guidelines for primary care physicians only -- my medications were stopped, like so many across the country, cold turkey no less. And I had been on pain medication for over 20 years.

My first treating physician didn't believe in pain medication unless absolutely necessary, so I underwent painful blocks for both upper and lower extremities, along with the implant of three different types of spinal cord stimulators and two pain pumps. The first one never worked and the second one, my body rejected.

I was poked and prodded, and my spine underwent such an assault that -- had I known then what I know now, I never would have agreed to.

I was given a variety of medications other than opioids, which never worked or caused side effects so severe, they certainly weren't worth taking. You name it, it was done to me before I was finally placed on an opioid regime only.

ROCHELLE ODELL

Now that I am "opioid free," my pain is off the scale. I no longer function. I have been house/bed bound since December. My vehicle sits dead in the garage. I have become too ill to even go to the doctor.

I contacted my Medicare Advantage insurance company for assistance due to my circumstances, but their willingness to help ended there.  See, I am supposed to find the energy to take a shower, get dressed, ride in a vehicle to a new primary care physician, then wait in the office and hope the physician can assist me. I can barely make it to the bathroom, let alone venture to a doctor's office. To top it off, my voice is now affected and I no longer talk on the phone.

I am but one among many across our nation, who has been adversely affected by these guidelines and false statistics. Your organization needs to research, then report the other side of the coin. Those of us who have lost the ability to function or live in severe pain, non-stop 24/7, 365 days a year, are suffering. Tell our story, please! 

Just because a person dies with prescription drugs in their system, does not mean they died of an overdose. It just means they had drugs in their system at the time of death. 

A chronic pain patient sees their pain management physician on a regular basis, usually monthly. We dutifully sign pain contracts and pee into the cup. It can be so degrading, but if we do not, we are labeled non-compliant and dropped.

A chronic pain patient guards their pain medication to a fault, they are too valuable for our survival to risk losing or selling. Yes, there are a few, very few, who use too many per month or divert them for money, but a good pain physician keeps track of that abuse, as do pharmacies.

Do illicit drug users do this? No, they only look forward to their next high. A chronic pain patient never gets high off their medication, their pain is that overwhelming. Illicit drug users steal and prostitute themselves to feed their habit. Unfortunately, even older Americans who have had their medications stopped or significantly reduced are now forced to search on the streets/internet for drugs for their pain.

Believe me, if I had the money and knew where to look, I might be tempted to do the same. But living on a fixed income precludes anything illegal. We didn't ask for these painful diseases, and we didn't ask that our careers be halted in our 40's and 50's in one fell swoop. If we could give our diseases back, we would in a heartbeat, including the drugs needed just to function.

Another issue is the fact many illicit drug users use heroin laced with fentanyl, along with mixing alcohol to obtain their high. Or the growing number of illicit drug factories that have been raided within the past year. Drug dealers are churning out hundreds of thousands of counterfeit fentanyl/oxycodone pills. Pill presses are shipped from China and the drug cartels south of the border, along with the illicit drugs required to make these pills. Did your reporters research this? No.

Living alone at 70 and not functioning has been a real test. Thankfully, I do my food shopping online, so my dog and I don't starve. It isn't the same as doing my own shopping, but I can purchase food including frozen and fresh.  I pay my neighbors a small amount to pull the weeds from my yard and pick up my dog's waste. But I am very close to just walking away from a home I have lived in for fifteen years, that's how severe my situation has become and I am not unique.

You only interviewed a very tiny group of people who claim to have gotten hooked on prescription drugs. AARP has overlooked the real problem, which is illicit drugs, not prescription drugs. I don't know where your reporters obtained their statistics, but they are far off base.

Like many elected officials and government regulators, AARP has grossly overlooked a significant number of people adversely affected by this false information. I could go on and on about the damage your article and incorrect information has caused to chronic pain patients. Quite frankly, I expected better from AARP.

Rochelle Odell lives in California.

To see the AARP series and watch a video version, click here.

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.