90% of Pain Patients Have Trouble Filling Opioid Prescriptions

By Pat Anson, PNN Editor

Nine out of ten pain patients with an opioid prescription in the United States experienced delays or problems in the past year getting their prescription filled at a pharmacy, according to a large new survey by Pain News Network.  Nearly 20% of patients were not able to get their opioid medication, even after contacting multiple pharmacies.

Over 2,800 pain patients participated in PNN’s online survey. Many were so frustrated with pharmacists being unable or unwilling to fill their opioid prescriptions that they turned to other substances for pain relief or contemplated suicide.

“My medication helps my pain be at a level I can tolerate. When I can't get it, I honestly feel like ending my life due to the pain. I wish they'd stop to realize there are those of us with a legitimate need,” one patient told us.

“The discrimination we receive, not to mention all the hurdles we are put through just being a chronic pain patient, is absolutely affecting my physical, mental, and emotional health. It’s only gotten worse, leaving myself and family to scramble looking for medication,” another patient said.

“The problem I've had this year is my pharmacy running out of my pain meds. Then it's a frantic and anxiety filled race to find one that will,” another patient wrote. “My regular medication has been Percocet for years and I haven't received that in almost a year. No pharmacies in this area have been able to get it.”

DID YOU EXPERIENCE DELAYS OR PROBLEMS GETTING YOUR OPIOID PRESCRIPTION FILLED AT A PHARMACY?

The U.S. is currently experiencing its worst drug shortages in a decade, with supplies running low for medications used to treat cancer, ADHD and diabetes. Less publicized are chronic shortages of oxycodone, hydrocodone and other opioids used to treat pain – shortages that that have gotten little, if any, attention from the White House, Congress, or federal health agencies like the CDC and FDA.  

While supply chain issues and low profit margins for generic medication are driving many of the drug shortages, the low supply of opioids is largely the result of policy and political decisions. Egged on by Congress, the DEA for eight straight years has cut opioid production quotas, reducing the supply of many opioids by over two-thirds in a failed attempt to bring the overdose crisis under control.

Opioid litigation has also played a major role in the shortages, with drug wholesalers and big pharmacy chains agreeing to limit the supply of opioids at each individual pharmacy as part of the $21 billion national opioid settlement.

Whatever the cause, American pain patients routinely run into problems when they try to get an opioid prescription filled. Nearly 85% said they were told by a pharmacist that their medication is temporarily out of stock, while 6% were told there is only enough to partially fill the prescription.

What was primary reason the pharmacist gave for not filling the prescription?

• 85% Opioid medication not in stock

• 6% Can only make partial fills

• 4% Insurance issue

• 3% Did not explain why

• 2% Might get in trouble or lose their job

• 1% Prescription too risky or inappropriate

Some pharmacists said they might get in trouble or lose their job if they filled the prescription, while others claimed the medication was inappropriate, too risky, or that there was an insurance issue. Many gave multiple excuses to patients.

“First it was that they didn’t have the full quantity in stock. They then tried to get me to take a partial fill, then they told me they needed a prescription for Narcan from the prescribing doctor, and then out of nowhere it’s not covered by my insurance,” one patient wrote.

“Pharmacy said that there were shortages everywhere and had no idea when they would have the oxycodone that I need daily for my lower back pain,” said another.

“Pharmacist stated that the medication was on back order. They also said that they don't know if they will ever get them back again,” a patient wrote.

“At first the pharmacist said both scripts were out of stock, then he said he could only do a partial fill. Then told me he couldn't fill my scripts anymore and to find a new pharmacy,” another frustrated patient explained.

Over 60% of patients did just that, by visiting or calling another pharmacy. That’s not as easy as it may sound. Over half said they contacted three or more pharmacies while trying to get their prescription filled.

Many were turned away, as pharmacies are often reluctant to take on new pain patients because that would make their rationed supply of opioids even tighter.  

“They had it in stock one month but the next month she told me she had to save them for her regular customers. Then she went on to say that Walgreens will no longer accept people with no insurance,” a patient wrote.

DID YOU HAVE TO FIND ANOTHER PHARMACY TO FILL THE PRESCRIPTION?

“Getting my monthly pain pills is a 3 ring circus joke. It takes 10 to 15 days of making calls covering 175 miles to make sure I can pick them up!” said another.

“CVS is only allowed so many hydrocodone a month and if my prescription doesn't get in ahead of somebody else's I'm screwed,” said a patient who lives with pain from fibromyalgia and osteoporosis. “Without it I am bed-bound and have to basically cry and crawl to the bathroom and back to bed.”

“The pharmacies try their best to fill your prescription, but if they don't have it in stock, they don't have it in stock,” another patient wrote. “It definitely affects the quality of life. You live in fear every month that this is going to be it.”

WERE YOU EVENTUALLY ABLE TO GET THE PRESCRIPTION FILLED?

PNN’s online survey was conducted from November 13 to December 31, 2023. A total of 2,826 U.S. pain patients or caregivers with an opioid prescription participated. We’ll be releasing more results in the coming days.  

States Need to Protect Pain Patients From Uncaring Pharmacists

By Leslie Bythewood, Guest Columnist

The unthinkable just happened again.

A Walgreens pharmacist got away with refusing to fill my prescriptions. It’s the second time that has happened to me at a retail chain pharmacy; the first time was at a CVS pharmacy.

The Walgreens pharmacy manager called and said she would not be able to fill the two prescriptions my board-certified physician had submitted electronically; despite the fact my health insurance had given prior approval for the medications and the pharmacy has been filling them month after month since December 2020.

Contrary to my physician’s best judgment and clinical decision making, this new head pharmacist suddenly decides she cannot fill the prescriptions because:

• The prescriptions are not in keeping with good-faith dispensing

• The prescriptions are not appropriate or safe to dispense

• The pharmacy’s therapeutics committee red-flagged the prescriptions as being too high a dose

• North Carolina limits the number of tablets that can be dispensed each month

• Filling the prescriptions goes against the pharmacist’s professional judgment

When I realized that my pharmacist would not fill the prescriptions and refused to even discuss the matter with my doctor, I wasted no time filing an electronic complaint with the North Carolina Board of Pharmacy, hoping for some recourse short of having to get the prescriptions filled at another pharmacy.

But little did I know about a North Carolina Board of Pharmacy rule entitled “Exercise of Professional Judgment in Filling Prescriptions.” That esoteric rule says a pharmacist “shall have a right to refuse to fill or refill a prescription order if doing so would be contrary to his or her professional judgment.”

It also states that a pharmacist “shall not fill or refill a prescription order if, in the exercise of professional judgement, there is or reasonably may be a question regarding the order’s accuracy, validity, authenticity, or safety for the patient.”

Federal law also gives pharmacists a “corresponding responsibility” not to fill a prescription for controlled substances if they believe it is “not in the usual course of professional treatment.”

Basically, the Walgreens pharmacist had the audacity to call into question the validity of my prescriptions being for a legitimate medical purpose, which not only is an insult to my physician, but second-guesses and overrides his many years of medical judgment and authority.

Worse yet, the North Carolina Board of Pharmacy agent I spoke with said that “refusing to fill the doctor’s prescriptions is not a violation of the Pharmacy Practice Act.” She went on to say the board cannot force the pharmacist to fill a prescription if the pharmacist is not comfortable doing so.

Bottom line: In North Carolina and many other states, the patient and doctor have no recourse and no avenues for appeal if a pharmacist refuses to fill a prescription. The only path forward is to have the doctor submit the prescriptions electronically to another pharmacy.

What I find so unconscionable about this whole ordeal is that it doesn’t seem to matter one iota to the uncaring pharmacist that I am a certified pain patient and that my doctor’s prescriptions are entirely legitimate and medically necessary, as has been documented in my medical records.

Nor did it matter that I’ve been on the same opioid strength since December 2020 without any adverse side effects, or that I am highly tolerant of my medications (a physiologic state that does not equate with psychological addiction) and have no history of overdose, substance abuse disorder, misuse or addiction. 

The pharmacist’s ability to get away with overpowering my doctor with unsound, medically unsafe arguments is exactly why we need to enact laws at both the state and federal level to protect pain patients from this type of abuse.

Leslie Bythewood is a freelance writer who lives in North Carolina. Leslie has intractable cranial pain syndrome caused by idiopathic severe chronic migraines and clusters.

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

Feds Warn of Scammers Impersonating DEA Agents

By Pat Anson, PNN Editor

The U.S. Drug Enforcement Administration is once again warning doctors, pharmacists and the public about criminals posing as DEA agents or other law enforcement officers and attempting to extort money from them.

The scammers call the victims, often using caller ID to appear as a legitimate DEA phone number, and threaten arrest and prosecution for violations of federal drug laws unless the victim pays a “fine” over the phone or by wire transfer. Doctors and pharmacists are usually threatened with revocation of their DEA registrations, which allow them to prescribe or dispense opioids and other controlled substances.

A DEA spokesperson told PNN the scam has been going on for years, but the agency has recently seen an uptick in complaints, sometimes hundreds per week.  

“We at headquarters have gotten to the point where we are just inundated with reports of scam calls,” said DEA spokesperson Katherine Pfaff. "And scammers calling us.”

The scammers are now also targeting the general public, according to Pfaff, sometimes claiming that a vehicle intercepted at the border with illegal drugs had been traced back to them.

“No DEA agent would ever contact someone directly like that and insist on payment over the phone or use scare tactics like that. That’s not how we operate,” Pfaff said. “Unfortunately, we have received many reports of people who have actually paid these scammers and lost a lot of money to them.”

The scam tactics continually change, but often share many of the same characteristics. Callers typically use an urgent and aggressive tone, and refuse to speak to anyone other than the intended victim. They demand thousands of dollars via wire transfer or in the form of untraceable gift cards taken over the phone.

Scammers ‘Well Informed’ of DEA Tactics

When calls are made to doctors or pharmacists, the scammers will reference their DEA registration numbers and state license numbers. They also might claim that patients have made accusations against them.

The scammers appear to be aware that many practitioners are already under scrutiny by the DEA for their opioid prescribing practices. In recent years, the DEA has raided and prosecuted hundreds of doctors for alleged infractions. The cases often end with doctors paying a fine rather than face hefty legal bills defending themselves in court.

“The scammers are well enough informed of the tactics DEA is employing against controlled-medication prescribers to be able to replicate them,” says attorney Michael Barnes, who has called for an end to “indiscriminate raids” on doctors.  

“Like the DEA, the impersonators are claiming to have evidence of wrongdoing against licensed health care providers, threatening to revoke DEA registrations, and demanding enormous settlements to make the nightmare go away. The only thing that is missing is the office raid.”

Impersonating a federal agent is a violation of federal law. The DEA urges anyone receiving a  call from a scammer claiming to be with the DEA to report it online to the agency’s Diversion Control Division or by calling 877-792-2873.

I Was Lied to by My Pharmacist

By Colleen Sullivan, Guest Columnist

I wrote an article years ago titled "Humiliated by a Pharmacist" about how difficult it is to be a chronic pain patient and to get prescriptions filled for pain medicines.

I would love to report things are better now, but sadly the truth is they aren't.

I was diagnosed with Mixed Connective Tissue Disease (MCTD) in 2001. Having MCTD basically means a person has two or more overlapping autoimmune conditions. Mine are dermatomyositis, rheumatoid arthritis and psoriatic arthritis. These are all very painful conditions to have.  

Since I've been dealing with MCTD for so many years, I've dealt with a lot of different pharmacists and learned a few things.

Whenever I enter a pharmacy for the first time, I like to speak with the manager, explain my conditions and what I need from them. Then, I ask what they need from me and if they are willing to work with me. I just want to make sure we understand each other and are on the same page. 

Picking up my prescriptions went smoothly for awhile. It was still stressful and scary to approach the dreaded pharmacy counter and hand over my prescription for an opioid. They still looked at the Rx and up at me with judgmental eyes. They still had an attitude and no empathy whatsoever.  

COLLEEN SULLIVAN

But I managed to find a place and a head pharmacist who was willing to work with me. It was a small pharmacy that wasn't part of a big chain and I thought they weren't going to be the "med police" like Walgreens. You know what I mean: Pharmacists who think they know more than your specialist and that it's somehow their job to judge if you're worthy of your medicine or not. 

This pharmacy is located in the same building as my pain specialist, which I thought was great.  First, if they have any questions or problems, my doctor is right upstairs. Second, it's super convenient being one floor below. I already have to drive 4 hours round trip to see my doctor in Homestead, Florida because there are no doctors in the Florida Keys willing to treat any pain patients. 

So, I went to this place and spoke to the owner and head pharmacist, Claude, who said it'd be no problem at all and he'd be happy to work with me. He assured me they have a special relationship with a drug distributor and a backup vendor as well. I was finally able to relax and not have a flare up every month from the stress of going to a pharmacy.  

Things were good for six months or so, but then suddenly the whole staff started acting weird towards me. Here we go again, I thought. They started insisting I call them days in advance every month to remind them I'm a customer of theirs and to order my medication. I didn't mind doing that, but the more I thought about it, isn't that their job?

They'd assure me on the phone that everything was good, they ordered it, and it'd be there for me when I needed it.  

Then one day I made the two hour drive there and handed over my prescriptions. They went to the back and whispered to one another. That made me extremely anxious. Then, they came up and said, "Sorry, we don't have it." 

I stood there frozen in disbelief before asking, "Don't you remember talking on the phone with me and assuring me you had it?"  

Claude just shrugged his shoulders and said, "I can't help you. Sorry. I can order it now." 

Order it now? That means I would have to make the 4-hour round trip drive the next day just to pickup a prescription.  

This happened from then on, almost every month. When they didn’t have my meds, sometimes Claude would nonchalantly say, "Just drive around and look for it."  

JUST DRIVE AROUND AND LOOK FOR IT?

If you walk into a new pharmacy with an opioid prescription, it never goes well.  They look at it, look back at you and say, “We don’t have it.” They don't look in the back. They don't check the computer. They just say no. 

One thing you should know about me is I really hate confrontation. Stress makes my conditions worse, so I try to avoid it at all costs. I never argue with them. I meekly walk away and, out of desperation, cry in my car. 

I kept trying to get my prescriptions filled at this small pharmacy, because each time they'd apologize profusely and say it was an oversight and won't happen again.  

One of the last times I went there, I called in advance again. Claude says, "No problem. I ordered it and it's here. I'm looking at it. No worries."  

I get there and he says "Nope, we don't have it. It’s a problem with the distributor. Wait a couple of days and they'll get it." The whole time he's talking, I'm thinking, “You lied to me. Why did you lie?” 

So I wait. Three days later, I call and Claude says he can't get it. I end up having to go to Walgreens -- and that's a whole other story -- but eventually Walgreens gets it for me that month with stipulations.   

But now I'm three days behind in my medication. I have to get infusions every month on a particular day and Claude is well aware of that. Being three days off means two 4-hour round trip drives a month instead of one.

The next month. I called a week ahead because Claude had assured me he would work it out. But on the call he says, "Sorry, it's still a problem with the distributor."  

Out of curiosity, I asked who was the distributor. He tells me it's Cardinal Health.  

I decided to call Cardinal myself and within 20 minutes I find out there is no issue on their end and they can ship it to that pharmacy within a day. I think, this is great! Problem solved and I don't have to keep bothering Claude.

I called the pharmacy to tell Claude the good news and he was furious that I called Cardinal. He's literally yelling at me over the phone saying, "How dare you!" and "Who do you think you are?"  

I thought I wasn't just helping myself, but the pharmacy as well with the distribution problem they kept telling me about. Claude then refuses to receive the shipment from Cardinal and says they no longer want my business because it's "too much work.” He says he's done with me and tells me not to come into his pharmacy again. 

After hanging up and crying for 20 minutes, I start to realize there never was a distribution problem. It was all just a lie and he’s angry at me because I figured it out. Keep in mind this is two days before I'm supposed to refill. Because of his lies, I now had 2 days to restart the process of finding a whole new pharmacy. 

Honesty, it's sad that chronically sick people are being treated like this by medical professionals. All Claude really had to do was be honest and say, "I'm not comfortable working with you anymore. I will fill them for you one more time, so you'll have a month to figure something else out."  

If he could've just been professional and told the truth, there would have been no problem.  

Colleen Sullivan lives in Florida.  

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

A Pained Life: Who Benefits From the Opioid Crisis?

By Carol Levy, PNN Columnist

For the first time in almost 40 years, I have to fight to get my codeine prescription filled.

I understand intellectually what so many pain patients have said about the frustration, upset and upheaval they experience when a pharmacist refuses to fill their prescription or insurance refuses to pay for it. Or harder still, what they go through having their opioid medications cut down or stopped completely.

But I did not understand the emotional side of it until it happened to me.

The insurance company refused to pay for my codeine prescription. They had no problem filling it for the last many, many years but suddenly they need "authorization" from the doctor. How does that make sense? Writing the prescription was authorizing. Why do they need to add a second permission?

It is now over three weeks. The pharmacist tells me they have contacted the doctor's office three times: "You need to call them and find out why they haven't responded."

When I call the office, they tell me the pharmacy never sent over the forms they need.

So I call the pharmacy back. They recite a fax number for the doctor’s office. It is not the right number. I give them the number the doctor's office just gave me. “We'll try it again right now,” she says.

I keep my fingers crossed and hope I don't run out of pills before it is resolved — if it is resolved.

The pharmacy clerk and I talked the day the prescription was refused by the insurance company. I was venting my frustration over not being able to get the prescription filled, especially because it is the same prescription I have had for years, one that was always covered by my insurance.

To my surprise she says: "It is not just narcotics. Many insurance companies are refusing to cover or making unwarranted demands, requiring many more hoops to jump through. They have refused to cover certain creams and hormones, other prescriptions, non-narcotics that are routinely given and, until now, paid for by the insurance companies."

This is appalling. And makes no sense.  

But then I start thinking about it and was struck by a thought: Yes, there is an opioid crisis. And we’ve all heard the reasons they blamed patients for the “crisis.”  But I think there may be another factor at play: the profit margin.

After all, if we pay insurance premiums but they refuse to pay for our medication -- forcing some folks to pay cash rather than wait for all the rigamarole to be completed -- then the insurance company comes out way ahead. They get our monthly fees and work to make sure we get as little as possible in return. 

I hope I am merely being paranoid. But somehow, I doubt it.

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.

Your Friendly Neighborhood DEA Snitch

By Steve Meister, Guest Columnist

A recent story out of the Southeast caught my eye. A local pain management doctor has been cut off by local pharmacies, or more precisely, the patients of that doctor have been cut off because local pharmacies are refusing to fill pain scrips written by that doctor.

In these instances, which I’ve seen some of my own doctor-clients’ experience, the pharmacies’ actions range from altruistic and concerned, to cowardly and hasty disassociation from a provider who may or may not have done anything wrong.

The doctor who was the subject of the news story does, admittedly, write many, many pain prescriptions, and perhaps he does deserve a close second look by pharmacists. Pharmacists, after all, have a very important job, not only to fill a prescription correctly and consider drug interactions, appropriate dosage, and medical necessity, but they also have a responsibility under federal law to double-check the legitimacy of the prescription to begin with.

This is especially true when it comes to pain prescriptions, and so says the DEA. Loudly, in fact. So loudly does the DEA make this pronouncement to pharmacists, that many times I have seen pharmacists inform on doctors just to get the DEA off the pharmacy’s back.

While a pharmacist can always say, perhaps legitimately, that he or she was righteously concerned about the sheer volume of pain scrips coming out of a certain doctor’s office, that same pharmacist might be getting visits from DEA agents.

The pharmacist knows from the get-go that “naming names” is often a good way to get the DEA to redirect its focus. So pharmacists name names. And then other pharmacists in the area get word, and cut off the same doctor or the doctor’s patients. A type of local hysteria takes over, and pretty soon, there are a lot of pain patients finding pharmacy counters off limits to them.

What happens to these patients? An excerpt from the recent news story gives you an idea:

“I didn’t have a real good feeling about cutting people off cold turkey, but in some cases it was warranted,” a local pharmacist said.

The pharmacist interviewed is admitting that an abrupt cut-off of one’s prescription drug dosage can force people to go “cold turkey,” without tapering off of powerful medication on which the patient may have become physically dependent or developed a tolerance. What does it mean when there’s no tapering off? It means a patient risks going into withdrawal, which can be very dangerous and which subjects innocent people to great physical and psychological agony.

According to prescribing and pharmacy practice guidelines, doctors and pharmacists SHOULD NOT subject patients to abrupt, 100% cut-off from opioid dosage, even if a patient is exhibiting signs of misuse. Medication is to be titrated down, patients provided with enough medication for a reasonable time to allow them to find another provider, or be referred to substance abuse treatment programs if necessary, and patients are NOT to be placed at unnecessary risk of going into withdrawal.

And when the DEA is breathing down your neck, Mr. Pharmacist? It’s OK to kick patients to the curb then? No, it’s not. The pharmacist interviewed in the story is actually violating prescribing guidelines and probably running afoul of rules of professional conduct. He is certainly not placing patient safety ahead of his own survival. And without doubt, he is not alone in his self-serving behavior.

Unfortunately, as is often the case, people who otherwise act with dignity and compassion in their professional lives fail to show courage in the face of government intimidation. It’s easier to name names.

Steve Meister is a criminal defense attorney and former prosecutor in Los Angeles.  He advises prescribers on how to comply with prescription criminal laws, and defends people accused of overprescribing narcotics.  

This column is republished with permission from Steve’s blog, Painkiller Law.

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.