My Story: Why Is Everyone So Quiet About Rx Opioid Shortages?

By Kimberly Smith

I am a chronic pain patient in Florida with multiple modalities of pain: chronic intractable pain, pain from a sports injury, and pain from an autoimmune disease. To further complicate my situation, I also have a list of allergies and genetic mutations that leave me unable to take aspirin, NSAIDs, gabapentin, codeine, and morphine for pain relief.  

I have a background in medicine, pain management and hospice, so I’ve always been mindful of the spectrum of things that can go awry with opioids. I keep myself on a stable dose with the goal of just “dialing down” the pain enough so that I can function, while not relieving it entirely.  

Fifteen years ago, when public attitudes started turning against opioids, I was switched to a fentanyl transdermal patch because it was “less likely to be abused.” I had hoped to avoid using fentanyl until my final days, knowing that once you’re on fentanyl for an extended period, it’s a nightmare if you have to switch to anything else and potentially deadly if you suddenly stop.  

Starting in September, I started having trouble getting fentanyl patches at the CVS pharmacy I’ve been using for 30 years. Instead of the Mylan fentanyl patch that I’ve been using for 15 years, CVS only had a fentanyl patch that used a completely different type of adhesive mixture -- one that I absorb inconsistently and too quickly.

I had two absolutely frightening episodes using that patch where I couldn’t catch my breath.  I don’t think anyone would blame me for never wanting to try that brand again (Alvogen).

Now I call random pharmacies each month, trying to find the Mylan patch. The supply itself is dwindling and here I am needing one of the only two fentanyl patches still on the market. It’s insane and I’m constantly stressed, anxious and overwhelmed.  

Today, I called the CVS pharmacy about my second opioid, oxycodone 30mg, and was told this is the latest opioid that is only coming in sporadically. I’ve been having to use the oxycodone as a replacement for the periods when the pharmacies couldn’t source the fentanyl patch, so I no longer have any type of emergency supply (nor do I have the opportunity to build one up).

For me, this is the absolute end of the road for opioids. I lack the CYP enzyme to metabolize morphine and I have an additional mutation that affects the efficacy of the metabolic processes, so I require higher doses than “normal.”  

I’m in a terrible, terrible situation and I’m by no means alone.  I’m starting to dream about it every night.  My doctors and the pharmacy team who have been caring for me for decades are stressed and concerned, and all have made tremendous efforts to help. But without access to the two medications I need, their hands are tied.

One of my pharmacists searched the entire state for my meds for 9 weeks and couldn’t find any. I still have many friends who are pharmacists, pharmacy techs, doctors, nurse practitioners and physician assistants, and they’ve been telling me awful stories about how much time they spend trying to resolve the opioid shortages -- not to mention the emotional toll caused by listening to patients cry and panic about being left to endure horrible pain and withdrawal.  

I don’t understand why everyone is staying quiet about this problem, especially when the shortages affect the entire hospice system, oncology patients at cancer centers, anesthesia and twilight sleep procedures, emergency medicine, trauma medicine, surgical procedures, acute pain and, of course, chronic pain.  

Doctors and pharmacists have been responding to the shortage by moving their patients to other meds, which is exactly the harm that I suffered when I was taken off the Mylan patch. This further squeezes the availability of the meds that are available and pushes those patients out to make room for the patients who were on something else.  Even gabapentin is unavailable at many pharmacies.  This situation is dire and getting worse.

If politicians were smart, they would support legitimate patients and the relief of chronic pain by making immediate changes to provide opioids to those who need them. All of the patients who are suffering would absolutely cast their votes for anyone who relieved their misery and gave them their lives back.

Instead, the politicians just assume that pain patients don’t vote and write us off. This is incredibly shortsighted. We do vote - when we aren’t struggling with pain and forced withdrawal.

I’ve reached the point where I am legitimately scared about my future. The shortages will just grow worse and worse, unless and until sweeping, radical changes are made.  Most of us wouldn’t last two to three months without opioid medication, and some wouldn’t be able to endure just one.  

While I see endless reports about Biden and Trump in the mainstream media, there’s not a word about the opioid shortage crisis and the direct harm being visited upon legitimate patients. Diversion rates are low, overdoses are primarily caused by illicit fentanyl (a completely different substance than Rx fentanyl) and desperate patients feel forced to turn to the streets.

Isn’t this a violation of the spirit of our Constitution?  It is certainly cruel and unusual punishment. We who follow the law and contribute to society are being cruelly punished for the bad behavior of others -- behavior which is basically a lapse of morals and mental health issues, which cannot be legislated away. We need to change the media narrative and shame the politicians and policy makers who created this mess.  

Do you have a “My Story” to share?

Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Report Alleges Opioid Makers Bankrolled Patient Groups

By Pat Anson, Editor

U.S. Senator Claire McCaskill (D-MO) has released a scathing report that is sharply critical of patient advocacy groups and medical pain societies for accepting money from opioid manufacturers.

The report found that Purdue Pharma, Janssen Pharmaceuticals, Mylan, Depomed and Insys Therapeutics provided nearly $9 million to over a dozen non-profits and medical societies from 2012 to 2017.  In many cases, the amount of the donations was not fully disclosed by the recipients.

“These financial relationships were insidious, lacked transparency, and are one of the many factors that have resulted in arguably the most deadly drug epidemic in American history,” McCaskill's report alleges.

    Opioid Maker Payments to Advocacy Groups

• Purdue Pharma              $4,153,000
• Insys Therapeutics         $3,146,000
• Depomed                        $1,071,000
• Janssen                             $465,000
• Mylan                                  $20,250

Over the same five year period, physicians affiliated with the advocacy groups and medical societies accepted more than $1.6 million in payments from the opioid manufacturers.  

McCaskill, who is the top-ranking Democrat on the Senate Homeland Security and Governmental Affairs Committee, has long been critical of opioid prescribing practices and the role they played in fueling the so-called opioid epidemic.  Her report suggests that advocacy groups that criticized the CDC’s 2016 opioid prescribing guidelines did so to curry favor with drug makers -- not because of the well-documented harm the guidelines were causing pain patients.  

“Initiatives from the groups in this report often echoed and amplified messages favorable to increased opioid use — and ultimately, the financial interests of opioid manufacturers. These groups have issued guidelines and policies minimizing the risk of opioid addiction and promoting opioids for chronic pain, lobbied to change laws directed at curbing opioid use, and argued against accountability for physicians and industry executives responsible for overprescription and misbranding,” the report found.

"The fact that these same manufacturers provided millions of dollars to the groups described below suggests, at the very least, a direct link between corporate donations and the advancement of opioids friendly messaging. By aligning medical culture with industry goals in this way, many of the groups described in this report may have played a significant role in creating the necessary conditions for the U.S. opioids epidemic."   

Top 10 Recipients of Funding from Opioid Makers

1. U.S. Pain Foundation                                                      $2.922,000
2. American Academy of Integrative Pain Management     $1,265,000
3. American Academy of Pain Medicine                              $1,199,000
4. American Pain Society                                                       $962,000
5. National Pain Foundation                                                   $562,000
6. Washington Legal Foundation                                           $500,000
7. American Chronic Pain Association                                   $417,000
8. American Society of Pain Management Nursing                $323,000
9. AAPM Foundation                                                              $304,000
10. Center for Practical Bioethics                                             $163,000

"Sen. McCaskill and the others haven’t spent the necessary time talking to us to understand how we do things and what we have to offer," Bob Twillman, PhD, Executive Director of the American Academy of Integrative Pain Management said in a statement. "It appears that they’ve simply looked at how much money we got from a set of pharma companies, constructed a narrative about what that means, and published it."

Perhaps the most surprising detail in the report is the amount of money Insys Therapeutics gave to the U.S. Pain Foundation – over $3.1 million --- with $2.5 million paid in 2017 alone. Insys is the manufacturer of Subsys, a potent fentanyl-based spray that has been blamed for hundreds of overdose deaths.

Former Insys executives and sales representatives have been charged with racketeering and bribing doctors to prescribe Subsys off label to non-cancer patients. The Arizona drug maker has also been accused of misleading and defrauding insurance companies to pay for Subsys, which can cost tens of thousands of dollars for each 30-day prescription.

U.S. Pain founder and president Paul Gileno released a statement defending his non-profit's acceptance of the Insys money. He said the funds were used by the organization to fund a co-pay assistance program for cancer patients.   

"This funding, like any funding we receive, does not influence our values. When it comes to opioids, we believe both that people with legitimate pain have a right to effective care and that systematic changes must be made to address the ongoing opioid crisis," Gileno said.

McCaskill’s report makes no mention of the increasing role played by illegal opioids, such as heroin and illicit fentanyl, in fueling the opioid epidemic. A recent CDC report blamed illicit fentanyl for over half of the overdoses in ten states -- including McCaskill's home state of Missouri.  

Law Firms Major Donors to McCaskill Campaign

According to OpenSecrets.org, McCaskill has received over $6 million in campaign donations from law firms since 2005, including some currently involved in litigation against opioid manufacturers. Contributors affiliated with the law firm of Simmons Hanly Conroy have donated over $300,000 to McCaskill, who is running for re-election this year.

Simmons Hanly Conroy represents dozens of states, counties and cities that are suing Purdue Pharma and other drug makers over their marketing of opioids, and would pocket one-third of the proceeds from any settlement, according to reports.

A statement on the Simmons Hanly Conroy website claims the law firm "effectively invented large-scale, multi-defendant opioid litigation" and is a "trusted ally to local and state governments who seek justice and reprieve from the often debilitating costs associated with fighting the opioid crisis."

According to a survey of over 3,100 patients by Pain News Network and the International Pain Foundation, the CDC guidelines have reduced access to pain care, harmed many patients and caused some to consider suicide. Over 70 percent said their opioid medication had been reduced or cutoff by doctors, and 11 percent said they had obtained opioids illegally for pain relief since the guidelines came out.