The Search For Meds

PAIN MANAGEMENT 08.06.2015wpid-fb_img_1424364439689.jpg

Pain Patients Say They Can’t Get Meds After Illegal Rx Drug Crackdown

Pharmacies’ allocations are being restricted by wholesalers

by Rachel Gotbaum

Kaiser Health News

The accident happened 10 years ago when Chris Young was 35. He owned a salvage yard in Maui, Hawaii, and his employee had hoisted a junker on a machine called an excavator when the hydraulics gave out. The car fell on him from above his head, smashing his spine.

“He was crushed accordion-style,” says his wife Lesley.

The accident left Young with a condition known as “partial paraplegia.” He can’t walk and he needs a wheelchair, but he does have some sensation in his legs. Unfortunately for Young, that sensation is often excruciating pain.

“It feels like electric shocks, like lightning bolts going down my legs. And when it gets down to the bottom, it feels like someone is driving a big metal spike up my legs,” says Young.

To control the pain, Young, who has since moved to Florida, needs high doses of narcotic painkillers, but he can’t always fill his doctor’s prescription. He is not alone. In what may be an unintended side effect of a crackdown on prescription drug abuse, Young and other legitimate chronic pain patients are having increasing trouble getting the medicine that allows them to function on a daily basis.

Young’s pharmacy runs out every month.

“They just do not have the medications because they have run out of their allocation within the first week,” he says. “It’s just that bad, where I know I am going to end up in the E.R. because of not having my medications. We don’t know what to do. We’ve tried everything.”

Young’s pharmacist is Bill Napier, who owns the small, independent Panama Pharmacy in Jacksonville. Napier says he can’t serve customers who legitimately need painkillers because the wholesalers who supply his store will no longer distribute the amount of medications he needs.

“I turn away sometimes 20 people a day,” says Napier.

Last year Napier says federal Drug Enforcement Administration agents visited him to discuss the narcotics he dispensed.

“They showed me a number, and they said that if I wasn’t closer to the state average, they would come back. So I got pretty close to the state average,” Napier says. He says he made the adjustment “based on no science, but knowing where the number needed to be. We had to dismiss some patients in order to get to that number.”

According to Napier, DEA agents took all of his opioid prescriptions and held on to them for seven months. Napier hired a lawyer and paid for criminal background checks on his patients taking narcotics to help him decide which ones to drop.

“We’re being asked to act as quasi-law enforcement people to ration medications,” says Napier. “I have not had training in the rationing of medications.”

Until a few years ago, Florida was considered the epicenter for the trafficking of illegal prescription narcotics. The DEA and local law enforcement shut down more than 250 so-called “pill mills” — clinics where doctors could sell narcotics directly to people for cash. Now Florida doctors can no longer dispense narcotics directly to patients. Wholesalers, who paid to settle claims for failing to report suspicious orders of drugs, now limit the amount they sell to pharmacies, Napier says.

Jack Riley, who is acting deputy administrator of the DEA, credits a decline in opioid overdose deaths in Florida with an upsurge in law enforcement activity. The problem of addiction and the drug trade is dire, he says.

“A hundred and twenty people a day die of drug abuse in this country,” Riley said. “If that doesn’t get your attention, I don’t think anything can.”

Riley also says law enforcement efforts cannot be blamed for any claim of rationing of painkillers.

“I’m not a doctor. We do not practice medicine. We’re not pharmacists. We obviously don’t get involved in that,” said Riley. “What we do do is make sure the people that have the licenses are as educated as possible as to what we’re seeing, and that they can make informed decisions as they do dispense.”

Doctors, too, say DEA enforcement actions have made it harder for them to prescribe narcotics. Last year, hydrocodone products, such as Vicodin, were changed to Schedule II status, meaning they have a high potential for abuse and cannot be prescribed in large quantities.

“What we’ve seen is dramatic reductions in our ability to provide appropriate care for our patients in pain,” says Dr. R. Sean Morrison, director of the palliative care program at Mount Sinai Hospital in New York.

Morrison’s patient Ora Chaikin has been taking high levels of narcotics for years to control her pain. She has had multiple surgeries because her bones and ligaments disintegrate, a problem caused by rheumatoid arthritis and other autoimmune diseases. But Chaikin, who lives in Riverdale, N.Y., says her mail order pharmacy, CVS/caremark, has been denying her medications.

“Every month there’s a reason they won’t give me my medication,” says Chaikin. “Sometimes it’s ‘Well, why are you taking this dose?’ ‘My doctor prescribed it.’ ‘Well, why did your doctor prescribe so much?’ ‘Ask my doctor,'” she recounts. “That’s the dose that works for me and you’re made to feel like a drug addict.”

The DEA investigated both CVS and Walgreens, and both pharmacy chains settled civil suits in 2013 for record-keeping violations of the Controlled Substances Act. Walgreens paid an $80 million civil penalty, and CVS paid an $11 million penalty.

Riley, of the DEA, says it would be wrong to draw a line between these actions and problems like those Chaikin is experiencing. “If there is a chilling effect, it’s clearly not at our direction,” Riley said. “We’re simply enforcing the law, taking bad people off the street and really trying to interrupt the supply of illegal prescriptions.”

In a statement, CVS/caremark said that the dosage of pain medication prescribed to Chaikin “exceeded the recommended manufacturer dosing.” It also said that she “continued to receive her controlled substance prescriptions from CVS/caremark without interruption.”

CVS/caremark said it has a legal obligation to make sure controlled substance prescriptions are for legitimate ailments and “that patients are receiving safe medication therapy, including appropriate dosing.”

Ora Chaikin’s wife, Roseanne Leipzig, who is a geriatrician and palliative care physician, says when it comes to narcotics, there is nothing in medical literature that says a dose is too high.

“There is no maximum dose for narcotics,” she says. “It’s the dose you need to take care of the pain.”

The Florida Board of Pharmacy, which is responsible for licensing pharmacists and educating them on safe practice, has heard enough complaints from pain patients that it is addressing the issue in public meetings. In June, Lesley Young testified before the board on behalf of her husband. She said she has driven more than 100 miles trying to find a pharmacy that would fill her husband’s prescriptions for painkillers.

“I’ve had to do the pharmacy crawl like many of us here,” Lesley told the board. “I’ve been the one who had to go in and beg, crying, with stacks of his medical records, with stacks of imaging, only to get turned away, often rudely, saying ‘We don’t deal with those kinds of patients.'”

The next Florida Board of Pharmacy hearing is set for Monday. A representative of the DEA has been invited to attend.

This story was produced in a collaboration between NPR’s Here & Now and Kaiser Health News.

This article, which first appeared Aug. 5, 2015, also ran on NPR’s Here and Now. It was reprinted from with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

LAST UPDATED 08.06.2015

Pain by the Numbers


NIH study: chronic pain afflicts more than 25 million Americans  

by Rachel Gotbaum

Kaiser Health News

In one of the largest population studies on pain to date, researchers with the National Institutes of Health estimate that nearly 40 million Americans experience severe pain and more than 25 million have pain every day.

Those with severe pain were more likely to have worse health status, use more health care, and suffer from more disability than those with less severe pain.

“There are so many people in the severe pain category that something has to be done,” said Richard Nahin, the lead author of the analysis and lead epidemiologist for the National Center for Complementary and Integrative Health, the arm of the NIH that funded the study. “If people are in the most severe category of pain, whatever treatment they are getting may be inadequate.”

Published in The Journal of Pain earlier this month, the study is an analysis of 2012 data from the National Health Interview Survey. It follows a comprehensive 2011 Institute of Medicine report on pain.

The analysis examined pain differences among ethnic groups. For example, Hispanics and Asians are less likely to report pain.

“If you are dealing with a minority group that doesn’t speak English, you need to pay greater attention to eliciting what they mean when they say they have mild pain or severe pain,” Nahin said.

The authors of the analysis hope their work will help inform greater research and better treatment options for people in pain.

“We’re doing a lot of research on the mechanism of pain and potential medications. The problem is there is no silver bullet,” said David Shurtleff, deputy director of NCCIH. “These data are giving us a better understanding of the pain conditions in the United States. We now can understand how sub-populations across age and across ethnic groups are experiencing pain.”

Shurtleff said that pain is a challenge to treat because it is not just about what happens to a person physically. Emotional and cognitive factors come into play as well. “Our major focus is on symptom management for pain,” he said. “It’s not necessarily [one] medication or behavioral intervention. It’s likely to be an integrative approach using multiple strategies to help patients alleviate their pain.”

Paul Gileno, who has had chronic pain since he broke his back 12 years ago, is doing just that. Gileno, who founded the U.S. Pain Foundation advocacy group, uses acupuncture, meditation, and changes to his diet to manage his pain. He is now able to take fewer painkillers, he said.

“You need to keep trying these different modalities because you never want to give up hoping that your pain can be reduced or go away,” he says.

Gileno endured multiple surgeries and has tried many different pain medicines, but he still lives with pain every day.

“After I saw the last neurologist and the last doctor and they said, ‘Listen we’ve done everything we can do and I don’t think your pain is going to go away,’ I had to come to terms that I would have chronic pain for the rest of my life,” said Gileno. “Pain comes with a lot of baggage. It comes with depression. It comes with feeling judged and you feel less of a person. You become very isolated.”

Untreated pain is something Dr. Sean Morrison sees in many of his patients. He is a geriatrician and director of Palliative Care at Mount Sinai Hospital in New York.

“Pain causes a tremendous amount of suffering,” said Morrison. “It has huge economic costs, because of people who cannot work … And it has a significant impact on caregivers who are caring for people who have pain.”

As more effective treatments are developed for a greater number of diseases, a growing number of people will suffer from pain as a side-effect, he said.

“Many of the cancer drugs we use now result in permanent nerve injury and resulting neuropathic pain which is very difficult to treat,” he said.

Another of Morrison’s frustrations is the growing level of scrutiny physicians and pharmacists are under as they treat pain. The law enforcement crackdown on prescription drug abuse appears to be making it harder for legitimate pain patients to get the medicines they need.

“What’s happening is that the same drug is being used appropriately by group of patients and inappropriately in a large segment of the population,” Morrison said. “What we’ve seen is people in pain are the unintended victims of the war on drugs.”

NIH is in the process of finalizing a National Pain Strategy to coordinate efforts among different agencies to prevent, treat, manage, and study pain.

This article, which first appeared Aug. 24, 2015, was reprinted from with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

I Miss The Me I Used To Be

I had to finally say goodbye to someone very important in my life. Me. The original me. The me I used to be. The me I finally understand that I will never be again completely. If I’m cured by some miracle. If my illnesses go away or into remission. If I get healthy again as quickly as I got so horribly sick. I’ll never be the same person I was. Pain changes people. I went through, and continue to go through a trauma to my body and mind. A death of a loved one can be gotten past eventually. You don’t forget that person ever. You grieve their loss, you miss them, you go through stages of different emotions. In time, you find ways to cope, to fill the loss with memories, with other people, with activity. You don’t hurt so badly and you begin to remember the good times fondly. In chronic pain, you can’t step away or separate yourself from you. It’s a part of you 24/7. Every minute of every day. You feel it, you think about it, you cry, you scream, you rail against it. You can’t get away from yourself. It’s like a cloak that covers you from head to toe. A dark, black, heavy weight. It presses down on you, forces you to keep your head down, bend under the strain. It hurts to smile, so you frown. It hurts to laugh, so you cry. It hurts to reach out to others, so you shut down. There is no escape. Meds can ease it temporarily. Cognitive thinking can help you understand it. Counseling can change how you look at it. But it’s always there. And always will be there. So you have to find coping mechanisms. I’m not there yet. I’ll get there. I’m determined and stubborn. But I still grieve the loss of the person I was. You would have liked her. Most people did. She was smart, funny, personable. She had a quick, dry wit. She loved being around other people. She treasured her friendships and loved her family. She wanted to learn a little about everything. She was smart. She was a good friend and always sympathetic to those in need. Always willing to help others. She was empathetic. She loved to travel and learn everything about new places. She was one of the good ones. I miss her everyday. There is a huge hole in my heart and soul where she used to reside. It will never be filled. The new me is like an infant. Having to learn from the beginning my limits, my goals, my wants and needs. My dreams. I am getting to know myself slowly, a little something new every day. The new me will be okay. Not a pale imitation of the old me. I won’t allow that. I’m still in control. The new me will push and fight to become as strong and happy as the old me. Just not today.



wpid-wp-1432820239465.jpegI’m so tired. Tired of being tired. Not just tired tired, but so freaking tired that I can’t see straight. I can’t remember the last time I got more than 2-3 hours of solid sleep. I catch myself dozing during the day. I jerk awake like my body is fighting sleep. All I want is to fall asleep, not dream, and stay asleep for an entire night. Sounds easy, right?! It’s not. It’s a simple wish that I can’t seem to have granted. Insomnia is a symptom of chronic Migraine and Fibromyalgia. Painsomnia is a catch .22, the pain doesn’t allow your body to sleep. It’s an endless cycle of chasing sleep. Never deep REM sleep, just dozing and jerking awake. Usually accompanied by nightmares. Non – restorative sleep. Where you wake even more exhausted than you were before. Eyes hurt. Brain hurts. Neck hurts. Head feels like bucket of cement. Infuriating that I can’t have what comes so naturally to most. I have to fight for everything now, even sleep.

Sunday Morning

After almost 4 years total, I finally have an appeal hearing date in October! It’s been a long, painful journey to get here. So many doctors, tests, medicines, side effects, failures, doubts, fear, depression, anxiety, panic, and anger. Anger at having to prove my pain as real and not contrived. Having to validate to others that I AM as sick as I say I am. Hearing strangers tell me I should be working. Others are worse off than I. I’m taking advantage of benefits I don’t deserve. I’m lazy. I’m faking. I just want to sit at home and watch television. Even worse than strangers stating these opinions are those I once considered friends. People who worked alongside me when I had a bucket by my desk from the nausea. Co-workers and bosses saying I looked fine, why was I doing this? Close “friends” who got tired of me cancelling on them. Telling me to “get over it!” The hurt this caused will never be forgotten. Trust was lost. I became hard, distant, keeping to myself. I was always so social. I loved being around others and didn’t really enjoy being by myself. Now it was me, myself, and I. I couldn’t count on anyone else to be there for me in my time of need. Whereas, I was always there for them. I cried for their losses, cheered for their wins, lent an ear to listen or a shoulder to cry on. But when I needed the support, they were gone. I don’t know if I’ll ever be the same with people. I’m distrustful, cautious, careful, where I used to be so open and welcoming. I don’t tell new people much about myself now. I smile and act happy. I downplay what they may have heard. I’m not me anymore. I don’t know if I’ll ever be again. That hurts. A lot. wpid-fb_img_1427190082682.jpg


This letter was not written by me. I fully agree with the authors’ views on chronic pain management. We sufferers are being left with very few options if nothing changes. Thanks Mr. Unger for writing about how we all feel. The embarrassment and shame of being treated like a criminal is unfair, but widespread in our world. wpid-fb_img_1424364439689.jpg

By Donald N.S. Unger

FEBRUARY 03, 2015

I WILL BE in chronic physical pain until I die. I’m 53, and this has been true for more than half of my life. I accept it.

Pain medication is inadequate. But with it I am more consistently functional and can minimize being housebound, bedridden, or hospitalized. I can be a responsible homeowner, spouse, parent; I can work as a teacher, a writer, an editor.

I recognize that drug abuse and addiction are serious problems. But ever-tighter regulations, at both the local and national levels, are of dubious value in reducing them — while causing grave harm to those of us in chronic pain, to the overwhelming majority who take medication for appropriate reasons, with effective oversight.

We don’t talk about this much — “They’re-making-it-harder-for-me-to-get-my-drugs’’ isn’t exactly a winning public flag to fly.

I’ve never been arrested, found to be out-of-compliance, had a substance-related accident or hospitalization, but increasingly I am a suspect, treated less as a patient and more as a criminal.

I’ve been subject to drug testing — random-but-regular, bitterness rising — for longer than I can remember. I recognize valid public health concerns associated with taking pain medication: doctor shopping; mixing prescribed drugs, or street drugs, from a variety of sources; people who scam physicians into providing legal prescriptions, then sell the meds on the street. Initially, I didn’t think I would care.

But I do care. The feelings of humiliation and degradation don’t fade; they simmer.

Increasingly I am a suspect, treated less as a patient and more as a criminal. The feelings of humiliation and degradation don’t fade; they simmer.

My latest pain contract, presented as a requirement for obtaining care, included a demand that I appear, whenever ordered, before any practitioner in the health maintenance organization to which I belong, within an hour’s time, with my medication bottle in hand.

For a pill count.

How, exactly, is that supposed to work?

I have a job, a family, a life. I can’t carry around a bottle of prescription narcotics; the contract deems loss, theft, or damage as suspicious activity, and the pills would not be replaced. So I would have to interrupt teaching, go home, retrieve the pills, and report to a practitioner.

Within an hour.

I would rarely be able to do this, and when I could, doing so within an hour would usually be impossible. But in failing to comply, I would risk the revocation of my “pain medication license.”

Again, abuse of prescription pain medication is a serious problem; people are dying. But a vastly larger group of us are living — in unremitting pain, in the face of which we do the best we can to remain productive and independent, to benefit, rather than burden, our families and society at large. Most of us have accepted ever-more-onerous restrictions, no matter how humiliating — urination on command, guilty-until-proven-innocent — regardless of how they clash with American values and medical ethics.

Do we have a choice?

Well, sadly . . . yes. Street narcotics. They are broadly available, and they’re less expensive. There’s no oversight, and no humiliating urinalysis.

But is this the direction we want to go?

Room To Breathe

Finally! After almost 3 years of paperwork, phone calls, information gathering, collecting records, frustration, anger, and crying, I have a hearing date for SSDI! Since 2011, I’ve been denied twice. I hired a lawyer who appealed my case on September 14th, and, and several weeks ago, I was informed by my attorney that SSDI was currently reviewing my file to see if I qualified as a “Dire Need” or “Special Circumstances” case. I apparently did, because I  have a hearing on October 15th! Finally! The relief of just having a confirmed date is overwhelming. Yes I’m scared. Yes I’m concerned. Yes I’m nervous. But I can do this! I have suffered, in agony, without any assistance from  state or government for almost 4 years. I have bankrupted myself and my mother is on the verge. I deserve this dammit! I’ve fought so hard and for so long! I deserve some help! Some relief (at least financially), some compassion and empathy (hopefully) from the judge. I hate that it is on me to prove how sick I really am. To prove that I’m not faking any of this, but really, who would want to live like this?! I know that winning my case and getting my benefits won’t ease the pain, but it will certainly ease my mind, which will be a huge load off of me. Please think of me on October 15th! I’m not just fighting for myself, but for everyone suffering from invisible illnesses. Better days ahead! #AlwaysKeepFighting wpid-fb_img_1422635977059.jpg

My Safety Bubble

The longer the chronic pain wracks my body, the more depressed I get. That’s normal. I get it. 24/7 with no respite. Enough to drive anyone insane. I cry uncontrollably. I avoid sunlight and weather conditions that make migraines worse. I try to get to my scheduled appointments with my doctors and psychologist. I need to drive myself, so I can’t take my meds before I go. I get behind on the meds and the pain gets ahead of me. Then it’s days playing catch up. Usually in bed, in the dark, quiet, peace of my house. I don’t know each day what I’ll be able to do until I wake up. I don’t sleep much. Painsomnia. So between the pain, exhaustion, stress, anxiety, and depression, it’s easier to stay home. I’m safe here. here I can control pretty much everything around me. It’s the only environment I can control. That makes it so important and precious to me.wpid-wp-1432820239465.jpeg