During the recent Interim Meeting of the American Medical Association, the organization’s president, Dr. Barbara McAneny, told the story of a patient of hers whose pharmacist refused to fill his prescription for an opioid medication. She had prescribed the medication to ease her patient’s severe pain from prostate cancer, which had spread to his bones. Feeling ashamed after the pharmacist called him a “drug seeker,” he went home, hoping to endure his pain. Three days later, he tried to kill himself. Fortunately, McAneny’s patient was discovered by family members and survived.

This story has become all too familiar to patients who legitimately use opioid medication for pain.

Since the Centers for Disease Control and Prevention published its guideline for prescribing opioids for chronic pain in March 2016, pain patients have experienced increasing difficulty getting needed opioid medication due to denials by pharmacists and insurance providers.

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More troubling are recent press reports, blog posts, and journal articles that describe patients being refused necessary medication or those dismissed by their treating physicians, who practice in fear of regulatory reprisal. At the interim meeting, the AMA responded to these developments, passing several resolutions against the rash of laws and mandatory policies that limit or prevent patient access to opioid painkillers.

The CDC designed its guideline as non-mandatory guidance for primary care physicians. But legislators, pharmacy chains, insurers, and others have seized on certain parts of its dosage and supply recommendations and translated them into blanket limits in law and mandatory policy. Today, in more than half of U.S. states, patients in acute pain from surgery or an injury may not by law fill an opioid prescription for more than three to seven days, regardless of the severity of their surgery or injury.

Although many of these laws exempt patients with chronic or cancer pain, in practice they often affect those with long-term pain, like McAneny’s patient. Some insurance companies and major pharmacy chains, like Walmart, Express Scripts, and CVS, also have mandatory restrictions on the opioid prescriptions they will fill. In addition to imposing supply limits, insurers and pharmacies are increasingly using the CDC’s dosage guidance (the equivalent of 50 to 90 milligrams of morphine a day) as the basis for delaying or denying refills for long-term pain patients, even though the CDC guidance is intended to apply only to patients who have not taken opioids before.

The Drug Enforcement Administration and some state medical boards are also using this dosage guidance in ways that were never intended, such as a proxy or red flag to identify physician “over-prescribers” without considering the medical conditions or needs of these physicians’ patients. As a result, some physicians who specialize in pain management are leaving their practices, while others are tapering their patients off of opioids, solely out of fear of losing their licenses or criminal charges.

The laudable goal of these laws and policies is to stem the tide of unprecedented overdose deaths and addiction in the U.S. But here are three interesting facts: Opioid prescribing is currently at an 18-year low. The rate of prescribing opioids has dropped every year since 2011. Yet drug overdose deaths have skyrocketed since then.

Recent data from the CDC suggests that illegally manufactured fentanyl, its analogs, and heroin are responsible for well over half of all overdose deaths. Stimulants like cocaine and methamphetamines are responsible for another third. Deaths related to prescription opioids come next in line, although many of those who died were not the intended recipient of the prescribed medication. In addition, most deaths involve multiple substances that are used in combination, often including alcohol.

The vast majority of people who report misusing prescription opioids did not get them from a doctor under medical supervision, and as many as 70 percent reported prior use of substances like cocaine and methamphetamines.

Conflating the misuse of opioids with their legitimate medical use, and treating all opioids — illegal or prescription — alike is stigmatizing patients for whom opioid painkillers are necessary and medically appropriate.

There’s no question that taking opioid medications carries risks: The CDC places the risk of addiction with the long-term use of opioids at 0.07-6 percent. The risk of addiction justifies judicious prescribing, trying other forms of treatment before prescribing opioids, and carefully screening patients for a history of addiction and mental health issues when opioids are being considered.

But most patients who use opioid medication for pain do not become addicted, although they may develop physical dependence. Addiction is the compulsive use of a substance despite adverse consequences. Appropriate medical use is just the opposite, use on a set schedule as prescribed with benefits to health and function.

Nearly 18 million Americans currently take opioids long-term to manage pain; many of them have complex medical conditions. When appropriately prescribed opioids are denied, patients whose pain has been well-managed by them may experience medical decline, lose the ability to work and function, and resort to suicide. Denying opioids to patients who have relied on them — sometimes for years — may cause some to turn to street drugs, thereby increasing their risk of overdose.

Dr. Terri Lewis, a researcher and rehabilitation specialist, recently conducted a nationwide survey of 3,000 pain patients. More than half of those surveyed (56 percent) reported disruptions in care or outright abandonment by their physicians. Among those reporting disruption or abandonment, many experienced adverse health consequences (55 percent) as well as hopelessness or thinking about suicide (62 percent) as a result. In other surveys, physicians said that they were prescribing fewer opioids or ceasing treatment of pain patients altogether because of regulatory scrutiny, even in cases where they believed that doing so would harm their patients.

The CDC guideline and its progeny of laws and policies have created chaos and confusion in the medical community. Some physicians are telling their patients that changes in the law are the reason they are tapering them to a preset dosage of opioids or off of opioids altogether. Yet the specific dosage thresholds in the CDC guideline were never intended to apply to patients currently taking opioids. Indeed, nothing in the current legal or regulatory environment justifies forcibly tapering a patient off of opioids who is doing well, and there is no solid evidence to support such a practice.

Some physicians are also using the CDC’s dosage thresholds, or simply their patients’ use of opioids, as a reason for abandoning them. Abandoning pain patients out of fear of regulatory reprisal may violate a physician’s ethical duty to place a patient’s welfare above his or her own self-interest. If serious harm results from abandoning a patient’s care, it may also serve as a basis for discipline or malpractice claims. In addition, physicians and pharmacies have responsibilities under the Americans with Disabilities Act not to discriminate on the basis of a patient’s condition, including chronic pain, or a perceived condition, as when a person with pain is erroneously regarded as a person with opioid use disorder or addiction when there is no clinical basis for that perception.

The AMA’s recent resolutions formally push back against what the AMA calls the misapplication of the CDC’s guideline by regulatory bodies, legislators, pharmacists and pharmacy benefit managers, insurers, and others. The resolutions underscore that dosage guidance is just that — guidance — and that doses higher than those recommended by the CDC may be necessary and appropriate for some patients.

The AMA also took issue with the recent practices of regulatory bodies that subject physicians to oversight and potential sanction solely because of the opioid dosages they prescribe. Medicine involves treating patients individually, and weighing the specific risks and benefits of treatment in each case. Taking this capacity away from physicians hamstrings their ability to treat their patients — as does requiring them to practice in an environment of fear.

Epidemics instill fear, but physicians have a responsibility to rise above fear and advance the interests of their patients. The AMA’s action in advocating for patients and for the right of physicians to practice individualized care is an important effort in beginning to rebalance the scales in the joint goals of reducing pain and opioid addiction.

Kate M. Nicholson, J.D., is a civil rights and health policy attorney who served for 20 years in the Department of Justice’s Civil Rights Division, where she drafted the current regulations under the Americans with Disabilities Act and managed litigation nationwide. Diane E. Hoffmann, J.D., is a professor of health law at the University of Maryland School of Law, director of its Law & Health Care Program. Chad D. Kollas, M.D., chairs the American Medical Association’s Pain and Palliative Medicine Specialty Section Council and is the medical director in palliative and supportive care at the Orlando Health UF Health Cancer Center.

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  • I have Sjogrens-RA – fibromyalgia and have recently lost an eye due to aspergillus. I can not get my Orencia iv because all of my muscles are tearing and I am getting surgery this Friday for rotator cuff. I cut my leg 2 days ago required 10 stitches and was refused pain medicine. Orencia iv helps but when you need surgery you can’t have it. I need another eye so no iv. Pain drs tell me to sit in a chair. I haven’t had any relief in over a year. We need help from someone

  • I can understand what they are attempting to do, but without a non-opioid equivalent what they are doing is just ethically and morally wrong! I had a very hard time getting the medication I need until my VA doctor witnessed me having a pain flair up. My doctor had an ambulance take me to a local hospital emergency room and it took 2 shots of morphine to get my pain under control.

    I only take the medicine as needed and I am able to continue working a full time job. I had my doctor switch me to a extended release version of my medication and in the process I had a 5 day period without any pain meds. About 50 percent of the work day I had to lay on the sofa at work and could barley function I was in so much pain. The level of pain triggers migraines and that causes more work loss.

    Trying to sleep was almost impossible most of the time I was in tears the pain was so bad. I was lucky in that I still had pain medicine from a year ago that I keep locked in a safe and took one each night to reduce the pain enough to sleep. After 4 hours the meds would ware off and I would wake up.

    I don’t have desire to take pain meds or any medication unless absolutely necessary. My level of pain has reached the point of I either take pain meds and work or stop working and go on social Security. Personally I would rather keep working!

    I wish the ones making the guidelines could experience the pain that we experience, they would change their tune real fast!

  • I am so frustrated and depressed over trying to find any physician who will treat me as an individual and honestly assess my chronic pain to keep me on the medications that allow me to lead a normal life. I take a narcotic intermittently ( maybe 2- 3 days a month) when I can no longer stand the pain. Now that my regular doctor has left, I cannot find anyone to continue my treatment. They can keep track of every prescription filled yet just want to assume you abuse narcotics. Some cities are setting up clean and safe sites for drug addicts to shoot up illegal drugs, but the same lawmakers that support this will not help people who legitimately take narcotics for chronic conditions. This is insane. I wish there were some kind of class action law suit or something. Also, if my doctor prescribes a narcotic, what right under HIPPA does the pharmacy have to ask me about my health conditions? Is that not between me and my doctor? Pain clinics want you to sign an addiction agreement form that says you will undergo random urine tests. Fine, although again I feel I am treated like an addict. The problem is that if you test negative for the narcotic then no more drugs because they assume yo are selling them. But I take them intermittently so how does that work? I believe addicts need treatment and that addiction is a disease, but I also believe that all diseases should be treated appropriately. Perhaps we should bring back prohibition because of alcoholism. Something is dreadfully wrong and who will help? Where do we turn?

  • I left a comment earlier today, I have chronic pain from a twisted colon and pancreatitis. It is interment so I don’t take pain pills everyday. My doctor prescribes me 60 at a time . My renews about every 15 to 16 months. Either one of these chronic illnesses don’t allow me to drive, yet Walmart will only give me 7 at a time so I have to pay for these pain meds every time I get a refill. They won’t even keep my prescription for a year as prescribed I have to go to my doctor to get another prescription. I am 70 and live alone. How can CDC take the ability from my doctor to treat her patients. Who do they think they know better than my doctor. They don’t know me or my condition. And something else Walmart would not do anything with my prescription until I told them the illnesses that I have, who makes the decision on what illnesses get the pain meds!! They are putting all of under a umbrella of rules. We are all drug addicts. Walmart still hasn’t called me to pick up my meds maybe my illnesses don’t pass for pain meds.

    • DO NOT GO TO WALMART,CVC, OR SAMS CLUB TO FILL YOUR PAIN MEDS. These companies have decided they will regulate your pain meds no matter what your dr writes them for. Walmart even now asks what the pain meds are for, what diagnosis, they will only fill small amounts and you had better have the right diagnoisis. Walgreens still respects the patient and Dr’s. I have used Walmart since they had pharmacies….not any more.

  • I have had 3 failed back surgeries, 2 cervical. During the cervical fusion in 2004 the surgeon nicked an artery causing Horner’s syndrome. In 2013 I went off all opiods for almost a year and my quality of life and will to live decreased dramatically. In 2009 I was sideswiped in excess of 75 mph then 4 months later while stopped at a red light a guy was on his cellphone, not paying attention and hit me traveling in excess of 20 mph. I also have right shoulder rotator cuff injury that can’t be fixed via surgery. I have spondylolisthesis, bone spurs, several herniated discs and other issues including constant headaches. I have been on the same dosage of opiods for last 6 years. I have tried cutting back only to find that my ability to live a somewhat normal life is nearly impossible. Now my pain doc wants to wean me off my meds. I have various issues throughout my cervical, thoracic and lumbar areas. Have been dealing with these issues since 1998. I do not have arthritis. My issues are from sports and auto accidents caused by others. Several doctors have said that the only thing they can do is to keep me comfortable. With the craziness by the CDC I don’t know what I am going to do. Is my only option to go to street drugs and risk my life. Never in 20 years have I abused my meds. Open for suggestions. At least now I can function somewhat normally with pain levels between a 5 to 6 even with my meds. I can live with this. Without my meds I am stuck in bed. Open for suggestions. Thank you!

  • I have a close friend in her 60s that has 2 pace makers and chronic back and knee problems. She told me her health insurance is not paying for her hydrocodone anymore… She had to pay over 100 dollars. I gave her my GoodRx prescription(this one happens to save more money for her 1 prescription is the only reason I mentioned it) card to use but I should not have to! The aging and disabled should NEVER have there medication removed. this is very tragic!

  • Please lead me to the aclu doj re: ada pain rights. Im on the edge after being tapered against my will. 25 yrs disabled from fss. Help
    Thank you for your consideration.

  • This madness has to stop! I have been abused way to long. I am not a criminal nor an addict I have gone by the rules and I am tired of my rights as a disabled chronic pain sufferer. My doctor, even though he knows that I have been on Methadone for 30+ years continues to suggest treatments which have been tried and not worked. I know and understand the risk of taking opioids for such a long time and the alternative of being taken off means soon death. I would rather have a bit of normalcy in my life, knowing that it might shorten my life by a few years than to suffer and die because being taken off these meds. Enough us way to much. Something must be done or more and more people will die needlessly.

    • Dear Thomas W Kidd,I lost my doctor to retirement last June,2018 and have 3 doctors since at the same place. The latest one wants me to jump threw all these hoops. I injured myself in 1988 and have been on Methadone since 1998 and they have tapered me from 80 to now 35mg and plan to take me down to 20mg. I have to go to a yearly class every year and I was just at the last one in December and now I have to go again in 2 weeks. They say nothing new since 1988 and at last year there were 18 people there at the class in the same boat but for the first time I saw my Medicare bill for the class last year. It was like I saw a doctor and each of us were chatged $277 and I had to pay $98 of it. She also had me take my yearly EKG and she wants me to have a sleep study even though its the pain that wakes me up and she told me she couldn’t sleep at night if I didnt do these things by the time I see her on August 1st and also she said she wouldnt give me my meds if I didnt get them done,What a piece of shit doctor. She made me sick. Its partly at least in Washington state at Virginin Mason clinics about the money. I didnt want to do this but Im going to start doctor shopping. Hell I broke my back and cracked my neck in 1988 and have had a fusion of the neck and 5 surgeries of lower back and I acquired Fibromalgia from the injury and now I have severe Arthritis in low back and neck. I have tried everything over 40 years and the opioids were my last resort and it gave me a semi normal happy life. Now I need help with everything. I do see both sides as I have a daughter that has been a addict her whole adult life. She goes to a clinic and gets 155mg of methadone for her addiction but there going to take me to 20mg. So there treating addicts better than a pain patients. I would rather be dead. Sad to say but can barely walk now and I used to pace walk 5 miles 3 times a week and rode my bike 10 miles 2 days a week and other exercises to. Now no walking or exercises. If I have to see that doctor again I will die. I just know. She is awful. We have to band together but its going to take years Im afraid unless congress gets involved. I wish I new what to do besides just give up and die. Im 61 and had hoped to live like my Dad,He is going to be 90 and going strong but I cant live like this. Anyone that can help please help me and Thomas. Thanks!! Stephen

  • My father has been going to the VA Hospital in Houston for the last 4 months. He is in severe pain and can no longer lay down/sit in chairs. He has extremely sharp,crippling pains in his swollen legs and feet. The VA will not give him strong enough medicine for the pain; he has to drive several miles to get shots in his back and they wear off immediately after he gets back home. He recently scheduled an appointment with the pain management specialist, after months of x-rays and MRI’s ordered by his incompetent primary care VA doctor, but he has to wait weeks to see him since the specialist is only available once a week. So basically he is in pain all the time, cannot sleep, and can’t get the necessary medicine, like Oxycodone, to treat his pain.

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