The United States Food and Drug Administration, the Drug Enforcement Agency, and the Office of National Drug Control Policy have declared that the United States is in the midst of a prescription opioid abuse epidemic; 17,000 overdose related deaths in 2012.

Appropriately, they and other federal agencies have taken action.  However, the unanticipated result of their actions is that people in pain, who should be administered pain medications based on their physicians’ recommendations, are being kept from adequate pain relief by pharmacies that in some instances have been filling the same prescriptions for more than ten years.

After numerous reports regarding such situations from members, the National Fibromyalgia & Chronic Pain Association (NFMCPA) created a pain medication survey and posted it on Survey Monkey.  The survey results are included in the article "Current Access to Opioids – Survey of Chronic Pain Patients" in the March 2014 Practical Pain Management journal. Following are three tables representative of the 5,159 Pain Medication Survey respondents with fibromyalgia and/or other types of chronic pain conditions who logged onto the survey.

Table 1 is an overview of the most common pain complaints of these participants. The vast majority of responders had more than one pain condition, and their survey responses reflected those comorbidities. 

Table 2 illustrates that the most commonly prescribed opioid pain medication in this group was Hydrocodone 39.4%, followed by Oxycodone, 26.6%; Morphine, 7% and Fentanyl at 6.7%.

Table 3 indicates the physical and emotional symptoms experienced by people in pain being denied their prescription pain medications.
Table 1. Most Common Pain Complaints of the 5,159 Survey Respondents

Pain Type Number of Patients, n Percentage, %
Fibromyalgia 4356 91.9
Low back pain 3070 64.8
Neck pain 2334 49.2
Migraines 1999 42.2
Neuropathic pain 1999 42.2

Patients may have more than one pain complaint.
Table 2. Most Commonly Prescribed Opioids

Generic Drug Name Number of Patients, n Percentage, %
Hydrocodone 1530 39.4%
Oxycodone 1032 26.6%
Morphine 272 7%
Fentanyl 260 6.7%

Table 3. Physical and Emotional Impact of 846 Prescription Denials

Symptom Number of Patients, n Percentage, %
Physical Impact
Muscle tension 498 66.3
Sweating 421 56.1
Nausea, vomiting, and diarrhea 348 46.3
Emotional Impact
Anxiety 587 76.5
Irritability 543 70.8
Restlessness 456 59.5
Insomnia 440 57.4

Overall, 846 of survey responders (18%) stated that they had been denied having a prescription filled by a pharmacist on at least one occasion, with 63.6% reporting they had obtained opioid prescriptions at the same pharmacy on more than 10 different previous occasions. 18% reported that they had successfully filled opioid prescriptions at the same pharmacy from 3 to 10 times previously.  Only 8.5 % of the respondents who reported being denied the filling of the prescription had never previously used the pharmacy that denied the prescriptions. 

One of the most important survey revelations is that a specific survey item on suicidality found that 287 (37.7%) of those denied their prescription pain medication had considered suicide. These responders cited increased pain (100%) and opioid withdrawal (35.5%) as reasons for their suicidal thoughts. This is an alarming figure considering the already increased suicidal ideation in a population known to have much greater suicide rates compared with the general population.

As an organization that represents the voice of more than 120,000 constituents, the NFMCPA is aware that people who suffer with fibromyalgia and chronic pain conditions are often stigmatized by their loved ones, healthcare professionals, employers and society in general.  The new laws created to help eradicate prescription pain medication abuse have added another degree of futility to people’s lives who have already been made to feel their illness is somehow their fault and that if they truly wanted to get better they could.  Because pain is subjective and chronic pain is invisible, it is often difficult for onlookers to believe another person’s degree of suffering.  Most of us have experienced physical pain in our lives, some more acutely than others.  In childhood we fell and skinned our knees on cement or tumbled off bicycles, ending up with scrapes and bruises. Maybe we broke a bone or sprained an ankle.  For a mother, child bearing is excruciatingly painful, but then she has a baby in her arms to replace her suffering.  But for some, pain from an injury or illness that should have only come for a visit stays for a lifetime.

If you have ever experienced a toothache you know what suffering is.  Luckily, most of us in the western world have dentists who can take care of our pain:  pull the tooth or administer a root canal. In either instance the pain will subside, and with antibiotics and pain medication, we will quickly forget our hours of suffering.  Take a moment to contemplate what it would be like to wake up every morning with throbbing pain – not just isolated to a tooth, but all over your body.  Imagine pulling your stiff body out of bed to feed your children and get them ready for school.  Think of getting yourself dressed and going to work.  Maybe it’s a physical job like being a hairdresser or waitress; standing and walking for eight hours on feet that feel on fire. Or maybe it is a job at a desk where you sit in one position and look at a computer all day.  Maybe you suffer from chronic migraines or headaches that are worse when you look at a computer screen or are in bright light. Think of going home and wanting to just lie down but you can’t because you have children to pick up from sports practice, and you have to make cookies for tomorrow’s school party.  Activities that should be fun and part of a full life only make you suffer more.  And there are no answers for your pain; no medications or treatments that alter the course of your days of suffering.  No new tomorrows where pain is only a memory.  It infiltrates every task, every waking moment, and does not cease so you can rest. These are the people for whom doctors prescribe opiate medications such as hydrocodone, oxycontin, long lasting morphine and other drugs.  Just as insulin is the treatment for diabetes or beta blockers are used as therapy for heart disease or blood pressure medications are used as treatment to ward off strokes, for people with chronic pain, opiates are the drugs created and prescribed for their disease.  Yes, there are side effects, including dependence and addiction; but ask most chronic pain patients and most often those are small consequences compared to their suffering.  Other medications, including some antidepressants, are also habit forming and come with a long list of horrible side effects.  Beta blockers and dopamine agonists can be harmful to patients. Blood pressure medications can cause dizziness, falls and strokes.  Almost all medications, (you can refer to TV ads regarding Viagra or Enbrel) come with long lists of side effects.  For people with chronic pain, opiate medications are what help them tolerate their disease. Narcotic pain killers are the closest thing pain patients can use that offer the potential for a few hours, minutes, seconds of abated pain. 

The new rules and regulations set up by the FDA and the DEA to thwart deterrent prescription pain medication use and abuse abuse are necessary.  But, they should not be used to the detriment of people who actually need these drugs to ease their suffering.  Contracts with doctors that include the name of the pharmacy where the prescription will be filled together with visits to doctors’ offices to pick up new prescriptions each month seem reasonable – for healthy, pain free patients.  But what about the pain patient who is elderly, on a fixed income and has no transportation or anyone to help her?  Or what about the school teacher who goes to a pharmacy to pick up a pain prescription that has been filled by the same pharmacists for years only to be told her pain condition doesn’t warrant that strong of a medication or that the dose prescribed by her doctor is too much and refuses to fill it? And what if a parent of one of her students is standing close enough to hear this conversation? Or her minister? Or her neighbors? And maybe it is too late in the day to go to the doctor’s office to get a hand signed, new prescription. And what if it is Friday night and the physician won’t be available to see her until Monday?  Maybe she has used the last pill because she can only get 30 days worth of medication at a time, and she had to wait until that day to get her prescription filled. It is reprehensible that on top of their suffering these people are treated as drug seekers, drug abusers and criminals. 

Similar stories were related time after time in comments from people who took part in the National Pain Medication Survey. Many people expressed their embarrassment at being treated as a criminal drug seeker, especially in front of other customers. Another big frustration reported in the survey was the number of times people were told by the pharmacists that they were out of a particular pain medication and they didn’t know when another shipment would arrive. Rarely did the pharmacist offer any help to the pain patient regarding whether another drug store in that particular chain might have a supply of the medication.  Nor did they offer any other helpful advice that might have alleviated some of the stress for these patients. 

The NFMCPA strongly admonishes the FDA, DEA, HHS, and the Office of National Drug Control Policy to preserve the right to pain relief medications by legitimate chronic pain patients as well as protect the sacrosanct relationship between a doctor and her patient in their handling of the concerning addiction (of all illicit substances) issues.  The policies and actions by these agencies are resulting in unintended consequences for people in pain.  A balance must be struck between the healthcare community, FDA, the Department of Justice, and the DEA in the war on drugs that allows for protection of pain patient’s rights. 

McCarthyism singled out US citizens as Communists, opening the way to discrimination and forcing people out of their employment, social status, and their right to freedom of choice.  Lives were ruined and suicides were caused by this fanaticism.  In that instance people’s privacy was infringed on by suspicion and scrutiny of records detailing their membership in popular organizations or their association with certain individuals. This information was used to incriminate them in seemingly illegal and unpatriotic actions.  Today, electronic medical records are being used to single out people in pain and force them to find solutions to their problems separate from their doctors and other healthcare providers. The physicians who care for these patients are in fear of being identified as criminals who stepped outside overbearing state and federal regulations put in place by state and federal legislatures.  This discrepancy results in a split between medical ethics and the potential of losing their medical license. It is interesting that HIPAA was developed to safeguard American rights to privacy; the abuse of divulging electronic medical records to people outside of the medical community seems counterproductive. The public should be protected from drug related crimes and pain prescription overdoses, but not at the detriment of causing increased suffering to those those who are already disadvantaged and suffering.

One way to overcome this disparity and to reduce potentially addictive pain medications from the consumer market is to accomplish the necessary scientific research to provide more and better pain treatment strategies, and to follow the recommendations set forth in the June 2011 Institute of Medicine report Relieving Pain in America. More research dollars are needed as well as encouragement of young scientists to pursue investigations into remedies of pain control not currently known or used.  Until that time comes, better pain education needs to be instilled in our medical communities including the benefits of utilizing multidisciplinary therapies.  Much more can be done in medical schools to educate new physicians in chronic pain recognition and correct treatment for each patient.  In the meantime, the NFMCPA recommends decreasing prescription pain medication rules for people correctly diagnosed with a chronic pain condition by medical healthcare professionals. In a world as technically complicated as the one we live in today, this outcome will take time, expertise, compassion, and funding.  The NFMCPA commends those pain experts and healthcare professionals who continue to speak out on behalf of their fibromyalgia and chronic pain patients.  Surely there is a way to develop a compromise between the FDA, DEA, physicians and pain patients so that suffering is diminished.

(Written by Rae Marie Gleason, National Fibromyalgia & Chronic Pain Association Medical Education & Research Director)