History is repeating itself. Twenty years ago, a pain management crisis existed. As many as 70 percent of cancer patients in treatment at that time, or in end-of-life care, experienced unalleviated pain. Identified as a major medical problem, poor pain management became synonymous with poor medical care. In fact, prescribing adequate pain medication became mandatory for hospital accreditation.

The medications used to treat moderate to severe pain among people with cancer are the same opioids helping fuel today’s opioid crisis. Though it has turned a much-needed spotlight on the overprescription of these medications, it is overshadowing their underprescription among people who really need them, especially those with cancer. Two-thirds of individuals with metastatic cancer and more than half of those being treated for cancer report experiencing chronic pain, and 1 in 3 cancer patients do not receive medication appropriate for the intensity of their pain.

To get a sense of how people living with cancer are being treated for pain at a time when there is a growing stigma associated with opioid use, we reviewed 140 public posts on Inspire, the health social network we work for, written by 100 people with cancer and their caregivers. Although the writers spanned many cancer types, they primarily represented lung, bladder, and advanced breast cancer. In general, they described facing stigma from both health care providers and society in general.

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Some writers said their doctors now hesitate to prescribe opioids due to concerns over addiction. Restrictions on refills and their timing are barriers to consistent use of medications to treat pain. Many of the writers said they felt they were being treated like drug seekers when their pain needs are real and management is necessary. Their experiences with access were described as: “makes me feel like a druggie,” “I use a very low dose,” “treated like a pill seeker,” and “I am not part of the oxycodone EPIDEMIC.”

One individual wrote, “I have been made to feel like a criminal – from my doctor’s office…to the pharmacy worker who said very loudly to other patients in line that I was sure taking a lot of opioids. I was humiliated. I have been afraid to ask for pain relief as it seems like I am doing something wrong. During my cancer journey, I had to have a hysterectomy without pain relief…Hospitals feel they are opening the door to opiate abuses and my surgeon would not authorize pain medicine. I am terrified right now to ask for a refill on my pain medication.”

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While the stigma from health care providers can affect cancer patients’ access to pain medications, it is the stigma from society that affects their use. Many writers indicated that they feared becoming addicts and worried about withdrawal symptoms. They also offered concerns about what use of high doses or multiple daily pain pills says about them.

These misperceptions aren’t alleviated by what patients are learning about opioids. Varied messaging about addiction and dependence from the media, government, and even health care providers seems to be leading to confusion and misunderstanding among cancer patients. Some of the Inspire writers said that health care providers had told them that cancer patients who need increasing doses are addicted; others wrote that their providers said they cannot become addicted because they “don’t get high.” Some providers say those who need increasing doses are addicted, while others say it means they are becoming tolerant or dependent on drugs. These contradictory views leave patients unsure, with many of them opting to live with pain rather than risk addiction.

We read several posts indicating that fear of addiction is causing family caregivers to withhold prescribed pain medications from those they are caring for. Responses to these posts advised against doing that, offering the opinion that managing pain is more important than addiction. While caregivers take this advice seriously and often follow up with a physician, we don’t know what they finally decide to do.

Some of the posts advocated for proper, controlled pain management, arguing that stigma should not interfere with care decisions. Their basic message to other group members is: “Don’t feel guilty for taking pain medication.” They recommend seeking out clinics and teams with expertise in pain management, cautioning that oncologists may excel in their treatment of cancer but are not necessarily knowledgeable about treating cancer-related pain.

Inspire members who wrote that they are not feeling stigmatized expressed confidence in their opioid use, derived from having knowledgeable pain management physicians who are not only experts in the field but who take time to explain pain management strategies and who include patients in decision making. These patients feel they are part of a team that is both instructive and supportive, and experience fewer struggles with access or worries about how to take their medications.

Two decades ago, the medical community woke up to the fact that far too many people with cancer weren’t being properly treated for their pain, sparking a movement to improve pain control that may have helped give rise to the epidemic of opioid misuse now affecting the country. In addressing this problem, the pendulum has swung too far, attaching a stigma to using opioids for legitimate reasons. While individuals treated in pain management clinics or by physicians specializing in pain management may be inoculated against or protected from this stigma, not everyone with cancer has access to these professionals.

What can be done? Education and clear messaging seem to be key. Pharmacists, oncologists, family practitioners, and other clinicians who care for people with cancer need better education about pain management. So do patients with cancer and their caregivers. Pain management awareness campaigns aimed at both patients and physicians could help counteract the stigma and encourage practices that do not hinder legitimate access or use.

People with cancer who need medication to control their pain are getting lost in the middle. They need support, not stigma.

Sara Ray is senior director of research at Inspire, where Kathleen Hoffman is senior health researcher and writer.

  • My brother was diagnosed with mouth cancer and throat cancer the same day within a couple of weeks a feeding tube was placed and radiation and chemo began. He has radiation 5 days a week, fluids once a week, and chemo 3 times within in a 7 week timeframe. My brother has had a major stroke which took his speech also he is right side weak. My brother is in so much pain can barely sip water because of the pain from the irritation in his throat. He has been in treatment for 3 weeks. He was prescribed 5 mg hydrocodones for the pain which has become unbearable and they expect 100 pills should be plenty for the entire treatment. My brotherhas no voice and his language center was damaged during the stroke. I am very curious if this is normal I sit daily and watch my brother tear up in pain. I have had 3 relatives pass from cancer and never was prescribed such a small dose of medication to elevate pain. I would just like to know if my brother is the only one that was promised to help with the pain that he would definitely experience and was giving something that is normally prescribed for a toothache#need answers plz

    • I’m so sorry for his suffering. Contact the AMA directly here first thing tomorrow morning: opioidtaskforce@ama-assn.org He is exactly what this article is describing, even though ‘experts’ will tell you the 2016 CDC ‘guidelines’ were only intended for primary care physicians prescribing to opiate naive patients. They will tell us that the ‘guidelines’ were misapplied, yet they remained silent while state legislatures used those ‘guidelines’ to write laws that applied to everyone, they remained silent as the DEA raids practices looking for patients that fall outside of the guidelines who might be undergoing catastrophic illness like your dear brother. You must be his voice, and raise hell, in the oncology office, at the state medical board, call local media, call your congressional reps, state reps & senators, your governor. Demand to talk to the head of the oncology practice, make noise, until this madness is ceased. Bring every family member with you like an intervention when you do, to make it clear that many eyes are seeing the suffering and you are all on top of this and are demanding something be done to alleviate his pain. Contact the American Medical Association and the American Cancer Society by selecting your state and then selecting Advocacy/Quality of Life, and there should be a volunteer who can assist with advocacy, for example my state explicitly says pain medication for QoL and has a contact person https://www.cancer.org/about-us/local.html If things really hit the fan, get on social media, nothing can move heaven and earth faster than corporate shaming. Professional organizations like the AMA know this is happening, they’ve written letters, statements, but none have the power of law behind them. We have to raise the roof to put this failed policy back on course, because as we know, the treatment of your dear brother is not impacting the use of illegal street drugs one iota. Law enforcement knows this too, but it is easier to raid doctors offices and seize their assets than it is to hunt down and arrest drug traffickers from global cartels. Join the #chronicpain community on twitter, there are thousands of us and we exchange info and have lobbying projects, there are some activists who can give you direct advice to get a fire under the doctors backsides. A group called Don’t Punish Pain on twitter, she can also assist you in this fight for humane 21st century medical care. I hope we hear from you soon. Sending prayers for your brother.

  • Deborah L. Winn has a comment. Her comment is as simple as the phrase from the Constitution of this Great Country. “Life (death), Freedom, and the pursuit Happiness.” There is someone in the Pharmaceutical Oversight Structure in this country that hasn’t experienced their own bout of Cancer yet. Notions of the founding father’s have all but been lost. What’s next? No Food?

  • I agree about the Opioid Stigma.. Here in Wyoming a person would need an extra million dollars or be in the top 2% to get any type of effective pain control before the last few weeks or days of ones life. ” There is plenty of the Black Tar Heroin for sale! Must be for someone’s tax free retirement Acct.” Very frustrated with this situation. I have the Non curable Neo-Endocrine Cancer. Extreme Exposure to Mercury Vapor(3.5 years), I fell 12 feet and landed flat on my face and front torso, Dented the right Eye socket, broke out my top teeth, broke several ribs, hyperextended both feet and crushed ankles and toes, My L-4-5 Disks are gone in my back, Inherited more sensitivity to airborne irritants than anyone I have compared notes with! Pain travels from one injury to the next continually and I can barely move when there is a storm front with a substantial change in the barometric pressures.

  • I have arachnoiditis and have been told the pain is like cancer but you have no hope of death for relief. I know cancer patients aren’t hoping for death but I understood what the author was saying. I’ve been on opiates for over 37 years. It started with a herniated disc but now I have 4 herniated disc and arachnoiditis. I feel like a criminal for asking for pain pills, and if I ask for an increase they think I’m addicted and just want more. Maybe they should stop and think, as my condition gets worse the pain gets worse. I am penalized for having cronic pain by CVS, when it’s time for a refill I need to call them in the morning and then they make me wait at least 6 hours before I’m allowed to pick it up. When someone brings a script for the same medication but they are not chronic pain but just needs one fill they can turn it in an pick it up right away…discrimination by CVS!
    My life has been demolished due to pain. I cannot even do simple household chores, I enjoy a beer or two at night and my pain management doctor was aware of this but then I saw his assistant and he told me I cannot drink as long as I’m on pain management. I’m over 21 and live in the US but I’m being told because of my health issues I cannot do something that is legal…all the things I enjoyed I cannot do because of my pain and now I’m being told I have to stop drinking.
    I’ve explained to my doctor that my pain meds are not covering enough pain, I’m on 7.5 percocet and nucynta, but he has not even offered to raise the dose. I am allowed 3 percocet and 3 nucynta a day and towards the end of the month I am stressing so bad because I’m afraid I’ll be short on pills. I know I suffer from depression but anyone would if the activities they liked was taken away,; but, its ten-fold with the fear of not having something to help lessen my pain. It is really depressing to know all you have to look forward to is increasing pain and being treated as a drug addict.
    Cancer is a horrific disease but so is arachnoiditis and I wish people understood what we are going through and this includes doctors, pharmacies, friends, and family.

  • “The medications used to treat moderate to severe pain among people with cancer are the same opioids helping fuel today’s opioid crisis.”

    This is completely false.

    The false “over prescribing” theory only *expands* stigma by attaching it to patients. Legal medicine had nothing to do with increasing either the drug addiction rate or overdoses. Legal pills didn’t “fuel” anything. If they had, closing pill mills and interrupting access to diverted legal pills would have greatly reduced overdose deaths. The only thing pill mills did was shift the preferred drug of choice for many opioid addicts – to a much SAFER substance. Narcan is the only reason opioid overdoses have dropped a little in some places, and deaths from other drug classes are rising. It’s like playing whack-a-mole to focus on a single drug class.

    We’re witnessing more suffering, suicides, and (ironically) overdoses, and this idiotic demonization of legal drug makers is the reason. It’s an attack on free will (personal responsibility) and free trade. It’s also an inappropriate application of statistics. Individuals must accept their own risks related to choices they make (i.e., substances they ingest). The number of pills (or guns, or other technology) accessible per square mile per person cannot be used to develop collective policy. Addiction is a local problem.

    Regardless whether advertising and prescribing rules were followed to the letter (fines were paid for unethical marketing, anyway), no one forced pain relief on people beyond the short term. This misinformation is why people who suffer from painful conditions and illnesses are being treated like heroin users.

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