by Kim Krisberg
This is the first in a series exploring the intersections between effectively caring for people living with chronic pain and the rise in unintentional poisoning deaths due to prescription painkillers. The series will explore the science and policy of balancing the need for treatment as well as the need to prevent abuse and diversion. This week's story provides a look at the field of pain medicine and the patients it cares for; next week's story will look at the educational and risk reduction approaches physicians are employing to address opioid addiction and overdose.
It took six years of going from doctor to doctor to doctor for Penney Cowan to finally receive a diagnosis for her chronic pain: fibromyalgia. Doctors had told her she'd just have to learn to live with the pain — a condition that some days made it hard to lift a cup of coffee. So when she decided to join the pain program at Ohio's Cleveland Clinic, she didn't have high hopes. She says she expected the effort to fail.
"Chronic pain never really goes away," Cowan told me. "What's difficult for people to understand is that it doesn't mean you'll have the same intense pain 24/7. You have good days and pain days. I felt so isolated and alone for those six years. People would say 'you look so good' and I would say 'you should be inside my body.' And it's not just the pain — it's the fear of pain that's awful too."
Fortunately, the Cleveland Clinic did help Cowan develop a set of skills, such as biofeedback training, to help her manage the pain. Eager to sustain the methods she'd learned and share them with those in need, Cowan began seeking out others in her Pennsylvania community also living with chronic pain. The effort eventually led her in 1980 to found the American Chronic Pain Association, which today offers peer support and education for people living with pain as well as for health care providers.
"I wanted to let people know they're not alone and that there's a way that they can work on helping themselves better manage their pain," said Cowan, who's the association's executive director. "We don't replace proper medical treatment...we share with them coping skills, we want to empower them to help themselves and become part of the treatment team. When it comes to living with pain, you have to be an active participant."
Managing chronic pain — like managing most chronic health conditions — often requires a multipronged approach and prescription drugs can be an effective part of the treatment puzzle. However, one of the most helpful categories of drugs — opioids — is now at the center of a growing diversion, abuse and overdose problem in the United States. The misuse and poisoning rate now associated with opioids is indeed alarming; but in the backlash and frenzy to find a solution, patients are getting caught in the middle. Cowan tells me that she's heard from chronic pain patients who say their doctors are no longer willing to prescribe opioids as part of their treatments. Others say their doctors will still provide a prescription, but their pharmacists won't fill it any more.
"Each person needs to be treated as an individual," Cowan said. "Right now, we're not seeing (people living with chronic pain) as trying to regain control of their lives, they're just seen as people seeking out drugs. That's not fair. No one wants to be in that much pain."
An emerging science
About 100 million U.S. adults are affected by chronic pain conditions — a problem that comes with a cost of between $560 and $635 billion annually in medical care and lost productivity, according to a 2011 Institute of Medicine report, "Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research." The report authors write:
Pain’s occurrence, severity, duration, response to treatment and disabling consequences vary from person to person because pain, like other severe chronic conditions, is much more than a biological phenomenon and has profound emotional and cognitive effects. Pain can be mild and easily handled with over-the-counter medications; it can be acute and recede with treatment; it can be recurrent over months or years; or it can be chronic and debilitating, requiring almost constant attention and accommodation.
The report goes on to say that "many shortfalls in pain assessment and treatment persist despite humanity's familiarity with pain throughout history," with much of those shortfalls related to gaps in policy, treatment, attitudes, education and research. When it comes to the science of pain management, "it's like a toddler, it's just walking," says Ylisabyth Bradshaw, an assistant public health professor at Tufts University and academic director of its Program in Pain Research, Education and Policy. Bradshaw said that while we know a lot about how to treat pain in an operative setting and at the end of life, chronic pain is still somewhat mysterious to researchers.
"We clearly know how to deal with both those types of pain better than we know how to control chronic pain," she told me. "That type of pain control has many more challenges. We can do a lot, but we can't predictably control chronic pain as well as we'd like."
For millennia, opioids have been used as an effective treatment for pain. Still, there's a great deal of difference in how individuals respond to different medications — "my biochemistry is different from your biochemistry," Bradshaw said. For comparison, she said, there isn't one type of breast cancer and therefore, people need different types of treatment. The same is true for pain, she said: "A drug that may help me could be no better than a placebo for you."
"We're beginning to understand this better and we predict that within the next decade or so we'll be able to type someone's biochemistry," Bradshaw said. "But right now, it's closer to trial and error."
Bradshaw said she doesn't think the health care community was prepared for the negative consequences that followed as more physicians embraced the use of opioids to treat chronic, persistent pain in the 1990s.
"As physicians, we strongly guard our ability to practice for our patients' benefit," she said. "We don't want the pendulum to swing too far back so that we under treat pain, but we want to be careful to help prevent overdoses, misuse and abuse. Clearly, opioids are a real hazard to many people, so figuring out how to reduce the risk is our big challenge now."
'Patients are getting caught in the middle'
The increase in opioid prescriptions has unfortunately coincided with an increase in drug-related abuse and unintentional poisoning. According to the Centers for Disease Control and Prevention, populations that are particularly vulnerable to prescription drug overdose include those who have multiple controlled substance prescriptions from multiple providers; those who take high daily dosages; and people living with mental illness and who have a history of substance abuse. More than half of those who abuse prescription painkillers say they got the drugs free from a friend or family member.
CDC reports that the drug overdose death rate in the U.S. — the death rate per 100,000 population — has more than tripled since 1990 and has never been higher. The public health agency reports that about three out of four prescription drug overdoses are caused by opioid pain relievers and that the "unprecedented rise in overdose deaths in the U.S. parallels a 300 percent increase since 1999 in the sale of these strong painkillers." Today, opioid pain relievers are involved in more overdose deaths than cocaine and heroin combined.
The situation is one many doctors feel ill-prepared to deal with, and an easy way to avoid the controversy is to simply stop prescribing opioids. This non-prescribing approach can be devastating for patients, said Edward Michna, an anesthesiologist at Brigham and Women's Hospital in Boston and an assistant professor at Harvard Medical School. For example, Michna said he recently heard from a patient who is living with severe rheumatoid arthritis and who had an opioid prescription to treat pain. When her physician recently took a leave of absence, the rest of the medical practice refused to refill her prescription.
"Right now, I have patients who complain that they go to the pharmacy and they feel that people are making judgments against them," said Michna, who also serves on the Board of Directors for the American Pain Society. "I think certainly in the primary care community, which currently prescribes over 70 percent of opioids, there's a growing fear because of the obvious misuse and abuse. Access to care is being restricted, especially in under-served areas. Patients are getting caught in the middle."
Michna told me that the science of pain management has a long way to go, noting that even though pain is the most common reason people seek out a doctor's help, the amount of resources spent on understanding pain and its treatment is quite small. (According to the American Cancer Society, less than 1 percent of the National Institutes of Health budget is spent on palliative care research.) Adding to the issue, Michna said pain management as a specialty is still in its infancy and because there's no "real definition" of what makes for a pain physician, the "practice is all over the place."
"You can say you're boarded in pain management, but other that that it's like the wild, wild West," Michna said.
Michna noted that there are no long-term studies on long-term opioid use to treat chronic pain; he added that such research is sorely needed and will likely have to be funded at the federal level.
"Certainly, opioids are a major part of the treatment of pain, especially acute pain, but the question is whether they are effective long term, and we don't really know in what subpopulations of the chronic pain population they're most appropriate (for long-term use)," he said.
In fact, it's only been in recent years that "we have a general agreement that pain is a disease itself," said Lynn Webster, who's been practicing pain management for 30 years and is president-elect of the American Academy of Pain Medicine. Webster told me that as a result, there's a fragmented approach to the treatment of pain, and physicians don't have one solid set of standards to guide their approach.
Webster cautioned that what's being lost in the overall dialogue on the rise in unintentional opioid poisonings are the equally tragic consequences of not treating chronic pain, noting that as high as half of those living with chronic pain have suicide ideation. He said there's no question that patients are having a more difficult time accessing pain treatment as well as finding a doctor willing to treat their pain.
"There are consequences for not treating pain as there are consequences when we prescribe opioids to somebody at risk for addiction," Webster said. "The problem of prescription drug abuse and the problem of treating pain will require a broad coalition of people — it will require the regulatory community, medical community and legal community to jointly come together to solve this problem. No one group will be able to solve this problem by themselves."
Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for the last decade.
On issue that technology could help image a pill dispenser that is refilled and sealed at the pharmacy. To get a pill you put your thumb on a reader and the pill appears, if the time is right. This makes the selling and misuse more difficult. Of course we do need to continue the idea that if a patient is terminal who cares about addiction.
For example, Michna said he recently heard from a patient who is living with severe rheumatoid arthritis and who had an opioid prescription to treat pain. When her physician recently took a leave of absence, the rest of the medical practice refused to refill her prescription.
That's bloody criminal. If I were that patient, I would be complaining as high up the ladder at Brigham and Women's as possible.
My husband has been turned away from doctors since his dr had her license pulled. He has had good pain relief with methadone for 20 years. Now no one will help him since new drug laws in WAstate went into effect. He needs to find a real dr. before he just decides death is the only solution for his pain. He needs to do physical work. Somebody has to know of a doctor in the lynnwood, edmonds, bothel, everett, seattle area.
We need help before it is too late!
I think that idea for a mini machine, even a new computerized pill bottle top for dispensing daily meds is excellent! I have often wished for one, as chronic pain many times also comes with poor memory, sometimes I will hurt and can't remember if I took my pain pill or not nor when. With a thumb print scanner I would be more at ease, knowing I will not run out early either due to myself or others. Also I have hidden numerous pills while sleepwalking, and have no clue where I put them. Sometimes they are found weeks later, sometimes never found. My family has seen me do this! This solution seems like it would be a simple and effective way to stop diversion and abuse, plus create more jobs in technology and ease not just the chronic pain suffers mind, but dr's, Pharmacists, DEA, everyone concerned with it now! A very uncomplicated solution.
I suffer with fibromyalgia and on May 27, my doctor told me he had to wean me off of my prescription pain killers because of the reclassifying laws now enforce. I don't know how the FDA can do this to patients that suffer chronic pain. I'm thought of moving to another state but from what I'm reading its nation wide. Anyone know a doctor that will take new patients in the Lafayette, Baton Rouge, New Orleans area?
I've been through everything this article discribes and more. I've dealt w/doctor problems, Rx problems, and almost more gauling Pharmacist problems (some how these chemist seem to think that PhD = MD; thes ass monkeys need to be shut down; or medical problems are complex enough. I too was at the dawn of a working combination when a pharmacist got in the middle and the next thing I know my dr. ( a visiting fellow from china dropped me like a hot rock). The Pain management dept just let my doctor "fire" me. Never even new this was possible. I finally found a new primary care (the doc of the afore mentioned era dumped me amidst th rx confusion sighting he would not risk his license for me or anyone..... even though that primary care had known me over 20 years and always claimed he would have my back. That is not someone covering your ass in battle. Make no mistake, the new fed policy has turned this into an us vs them scenerio. The hardest part is defining who is really with us, "the patient."
I'm at the end of the rope and the end of my money and my government will not assist me in any way (something I never wanted to ask for in the 1st place.) I'm 45 and the only reason I push through the hellish pain of life is I don't want my kids discovering my body after I finally end the pain. So here I am caught between bureaucracy and hell.
This is the world I fought through disability for, earned my degree for. I had known I would never have married; I drug my family under with me. The vitriol I feel for this new era is immeasurable.
When do we come first again?
I had been seeing my Pain management Doc for 13 years. Last appointment I had at end of May they gave me a drug test. It came back Positive for THC and Adderall. I personally didn't think it was a big deal since THC is legal to use for medical use in over half of the states in US. Second this Doctor had previously prescribed me the Adderall that I had used. The problem per my Doc office was that the adderall hadn't been prescibed in previous 12 months. He had prescibed it for years and it was my choice to stop use. I had quite a few left over so when I felt I needed to use adderall again I used the pills I had left over instead of getting a new script filled that I didn't need. I swear in the 13 yrs that he had treated me, no one ever said you can be kicked out of his care for doing this. My doc would have put me back on it anytime if I had asked, but I didn't know. So after 1st drug test in 13 years they dropped me. Obviously it was him doing CYA. I'm just venting and letting others know of what can happen. I wish the medical system put as much work into their patients as they do covering themselves from Gov. Agencies.
Best of Luck to those of us suffering from Chronic Pain
My family dr. informed me recently that with the new drug laws he would no longer be able to write prescriptions for pain meds. and I would have to go to an authorized pain clinic. It cost me $65.00 a month to see the dr. and get a monthly prescription. Now I go to a pain clinic where I'm treated like a criminal, don't get proper meds., and it costs $200.00 per visit (cash) . I ask you, how are the new drug laws and the D.E.A. helping me with a crippling disease?
stopping compassionate physicians appropriately alleviating patient suffering is apparently an issue the D.E.A.... I dispute the number of suicides we will be seeing.
It is miserable to be in chronic pain, the way pharmacies view you like a junkie... We can invade countries half way across the world - but use Government resources to regulate a problem like this? No way. I'm 50 and cant stand due to an arthritic spine. Shake my head. I will most likely euthanize myself in the next few years, without pain meds, I am a burden to a family I love more than life itself.
Prayers of pain free days to all who suffer. God bless.
I know how you feel I live with chronic pain every miserable second of my life an when you try to get your script filled the pharmacist acts like he's the decision maker something needs to be done life is to short to deal with this
I have had chronic pain for several years and tried not to go down the road of narcotics use since as a nurse I was very familiar with how these patients are often unfairly treated by the medical community and uneducated family and friends. My pain has kept becoming more severe until I was praying every night that I would not wake up the next day frequently thought about suicide. I was able to find a compassionate doctor to treat me but the way I have been treated by other members of the medical community including other doctors caring for me because I am now on these medicines has been worse than anything I imagined. I have also recently learned from an MRI just prior to starting strong meds is that I have extensive loss of grey cells in my brain. Why is that important? Look up grey matter loss and chronic pain on google scholar. Lack of adequate pain control has been documented now for several years to cause damage to the brain including extensive loss of memory, damaged ability to learn new information and abnormal connections in the parts of the brain controlling emotion and affect. In other words, among other things your depression is likely physically caused in the brain by the damage. I wonder what would happen if multiple patients started filing malpractice suits against doctors for inadequately treating their pain resulting in brain damage? I'm not a fan of malpractice lawsuits but I bet it would change things quickly. In the meantime perhaps we can all write our congressman to make them aware of these problems and the burden that onerous laws are having on adequate treatment..
Recently diagnosed with RA..been suffering with pain on and off for two years...I am being passed back and forth to doctors..nobody wants to deal with my pain issues...I have taken everything recommended to no avail..I believe I am a responsible patient/person having had a business for 23 years, raised four children by myself...I am not granted pain relief for a bout of RA on the hip that's affecting my ability to function..once again passed to another doctor that I can't see for a month and a half because they are overwhelmed...I really want to crawl up and die sometimes....
While the concern is always raised about those who are overdosing with self inflicted poisoning, little is said about the thousands of pain victims who have been iatrogenically poisoned in the rush to provide an "alternative" to opioids: I speak of the thousands who have been inoculated with contaminated medications, most often steroids used in performing epidural steroid and joint injections for pain. Indeed some of the doctors who do injections have publiclty portrayed themselves as providing the "only alternative" to opioids for chronic pain! The ongoing saga of horror for those indirect victims of the war on drugs remains largely hidden from public discussion. Their story needs to be told as part of this discussion. They are the ones poisoned by the medical profession in its rush to use an "alternative to opioids," its rush to profit (huge dollars are paid for these procedures), and the doctors rush to escape the wrath of DEA and medical boards (many doctors have been driven from business for prescribing opioids, but not one for wrongfully or fatally injecting a patient.)
I have chronic pain due to Lyme disease. Shortly after contracting Lyme, I tore my quadriceps muscle simply cling stairs, and have developed arthritis in most of my joints. Docs don't believe in chronic Lyme anymore than chronic pain. Thankfully my primary care doc has no problem giving me all the pain meds I need until I can get into the VA pain clinic( I'm also being medically retired because of all this BS) but she is away on maternity leave and her sub just told me yesterday he was "uncomfortable" prescribing "such a high dose" of oxy and Vicodin, so now I don't know what I'll do until my regular doc comes back. At least I don't have problems at the pharmacist. He knows I'm military and at least according to the press, were all hopped up on pain meds and antipsychotics so he doesn't hassle me. I'm just afraid of what's going to happen in the future. My pain situation is almost guaranteed to get worse. Until I can convince som doc that I need long term antibiotics, I'm only going to get worse. I'm stuck in two medical BS issues.
I'm sick of it. I just want to feel better!
Early surgically induced menopause..at 25 years old, resulting in advanced osteoporosis and diffuse spinal and joint pain in early 40s..Fibromyalgia, though exhausting doesn't compare to being diagnosed w/erythromalagia, a rare vascular arterial disease, affecting my feet..and beginning to attack my hands. Withholding any medication that helps me have any degree of quality of life seems to go against the "first do no harm" slogan of that so called "oath".
Much research is still needed as the medical community endeavors to balance the fine line between effectively managing a patient's chronic pain and protecting them from the danger of opioid addiction. Recognizing that each patient requires an individual treatment plan is key.
This article, written nearly four years ago and if anything, the problem has only worsened.
Here's the problem, the federal govt decided several years ago, there is no such thing as "chronic pain," and further, only terminal patients may have pain medications. On Long Island, they began in Suffolk County, marching gustapo style, into pharmacies, demanding computer print outs of all physicians prescribing pain medications. They then visited these doctors threatening them with everything from loss of licenses to prison time. Wah Lah, eventually there are NO pain management practices remaining.
And now, several years later, politicians are trying to give good rationale WHY Heroin use in Suffolk County has grown to epidemic proportions. I have witness ELDERLY people, on walkers for God's sake, in the streets looking to "score" anything they can to relieve their pain.
There are many, MANY disease entities and post traumatic events, which cause horrific, debilitating, intractable pain for which there simply are NO alternative treatments.
Yes, the DEA has been very successful putting nearly every pain management practice out of business in this county. The "unintended consequences"? Heroin use has become epidemic AND, the numbers of adult suicides in this country has increased exponentially.