Access to the PPM Journal and newsletters is FREE for clinicians.
10 Articles in Volume 14, Issue #2
How Safe Is Epidural Steroid Injection? Examining Drug-Related Factors
How Important Is Evidence-Based Medicine in Epidural Injection for Low Back Pain?
Current Access to Opioids—Survey of Chronic Pain Patients
Opioid Prescribing Part 2: Appropriate Documentation of Follow-up Visits
Neuropathic Pain: A Literature Review
Translating Chronic Pain Research Into Practice: Chronic Pain and the Brain
Intractable Pain: Time To Understand and Use the Term (Again)
Are Antibiotics a Treatment Option for Low Back Pain?
Genetic Mutations in Cytrochrome P 450 2D6
Light Exercise May Lead To Faster Recovery After Concussion

Current Access to Opioids—Survey of Chronic Pain Patients

Results of a pain medication survey of people with chronic pain found that 18% of patients were unable to fill prescriptions by pharmacists on at least one occasion. Due to new rules and concerns about preventing drug abuse and misuse, many pharmacies have smaller quantities of opioids on hand, resulting in an increasing proportion of legitimate chronic pain patients unable to fill their prescriptions.

Prescription opioid misuse, abuse, addiction, overdose, and diversion have become crises on local and national levels.1-6 The latest statistics from Drug Abuse Warning Network (DAWN) estimates that over 1.2 million emergency department visits in 2011 involved nonmedical use of prescription medicines, over-the-counter drugs, or other types of pharmaceuticals. Of all prescription medications, pain relievers accounted for 46% of medication abuse, and opioids made up 29% of this category.1 To illustrate the scope of the problem, medical emergencies related to nonmedical use of opioids increased 183% in the period from 2004 to 2011.1

There have been a multitude of attempts to piece together a public health response to these crises. These include changes in state policies and laws, the development of prescription monitoring programs, the dissemination of educational approaches, and the development of tamper-resistant products by industry.7-9 With all of these efforts comes the challenge of limiting problematic access and use while also avoiding negative consequences for people in pain, whose access to opioids should not be encumbered unnecessarily.

The National Fibromyalgia & Chronic Pain Association (NFMCPA) is a nonprofit organization that services constituents with fibromyalgia and other chronic pain conditions. The NFMCPA met with several leaders in pain and policy to develop a patient survey with questions about access to care and prescription opioid pain medications. The survey was designed to measure patient concerns and worries about access to care at a time when regulations governing opioid medications were tightening. More specifically, at the time of the survey, the Food and Drug Administration (FDA) and Drug Enforcement Agency (DEA) were contemplating rescheduling hydrocodone medications to Schedule II status,10 and some retail pharmacists had been encouraged to exercise extraordinary discretion (eg, make diagnostic decisions including changing prescription dosages based on their judgment of the appropriateness of the prescribing physician’s diagnosis and prescribing).11-13

In its role as a patient advocacy organization, NFMCPA conducted the survey to observe the unintended consequences of policy changes and formally study the comments and concerns raised by the survey. The survey questions were inspired by a pattern of complaints made to NFMCPA based on patients’ reported experiences of negative treatment (many reported being treated as “criminals” by “pharmacists who had been filling their pain medications for many years”) and inconveniences encountered (descriptions of “nightmarish” additional travel to doctor’s offices, sometimes to cities many miles from their residences to get a replacement prescription”), even as withdrawal began or was looming due to the delay in obtaining medications.

Another comment repeated frequently to the NFMCPA by constituents concerned the “degradation and embarrassment” they experienced from being treated as a “drug seeker,” often indiscreetly in small towns where “everyone in the pharmacy including other customers knew [them].” Complaints came from school teachers, church choir members and/or medical professionals alike; all reported shame and demoralization. With this as a backdrop, questions were created for this survey.

Survey Design

The survey consisted of items that were created on a face valid basis with expert consensus as well as items covering domains such as demographics and symptoms developed for previous NFMCPA surveys. The questionnaire was designed to be taken over the Internet via Survey Monkey, a commonly used email survey program. Once the initial survey was compiled, it was reviewed by members of the NFMCPA’s “Leaders Against Pain” program. After being vetted, the survey was posted on Survey Monkey; an announcement was sent to NFMCPA constituents and was posted on the organization’s Facebook Page. In addition, the organization’s online newsletter, the Advocate Voice Newsletter, sent to the same constituents, contained an article about the survey and a link to it.14 A series of descriptive statistics were generated from responses to the survey items.

Results of the Survey

A total of 5,159 respondents with either fibromyalgia or other types of chronic pain logged onto the website link and consented to take part in the survey. Ages ranged from 19 to 85, with the youngest and oldest in the cohort most likely to report having been denied a prescription. The level of education reported was most often a college (22.1%) or high school (19.1%) degree, followed by those who had two (17.2%) or one (13.2%) year(s) of college experience. A total of 609 respondents (12.4%) reported having obtained a graduate degree. The most often cited pain complaints (not mutually exclusive) were fibromyalgia (91.9%), low back (64.8%), and neck (49.2%) pain, followed by migraines (42.2%) and neuropathic pain (42.2%) (Table 1).


A total of 3,879 (75.2%) reported that they were currently taking a prescription pain medication. The most often reported medications were hydrocodone (39.4%), oxycodone (26.6%), morphine (7%), and fentanyl (6.7%) (Table 2). Of the 3,879 patients, 1,289 (69.2%) reported being on the medications for over a year and 460 respondents reported they had been on the medication for at least a few months (24.7%).

Overall, 846 respondents (18%) stated that they had been denied having a prescription filled by a pharmacist on at least one occasion, with 63.6% reporting that they had obtained opioid prescriptions at the same pharmacy on more than 10 different occasions previously and 18% reporting 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 their prescription had never previously used the pharmacy that denied the prescription.

Respondents with a history of being denied a prescription were asked to relate what reasons the pharmacy gave them for failing to fill the opioid prescription. The most frequent reason cited was that the pharmacy did not have enough medication in stock (52.9%). Other reasons for denial included having the pharmacist feel the dosage was inappropriate (23.3%), the pharmacy was no longer stocking the drug (21.8%), or that there was a national shortage of the opioid (20.7%). For those denied, the vast majority (86.3%) stated that the pharmacist did not help them find an alternate pharmacy that might be able to fill the prescription.

After experiencing a denial, a majority (n=506, 67.3%) managed to fill their prescription somewhere else within 1 week, but 123 patients (16.4%) were never able to get the prescription filled. Of those getting the prescription filled elsewhere, most reported that they either visited 1 pharmacy (50.9%) or 2 to 4 more pharmacies (36.3%) to have the prescription successfully filled. This led to the majority of respondents who experienced a denial being out of their medications for 1 to 2 days (34.5%) or 3 to 6 days (29.3%).

Impact of Prescription Denial

The final portion of the survey concerned the global impact on those who had experienced the denial of having a prescription filled. Physical manifestation resulting from not having their medications included signs of acute withdrawal such as muscle tension (66.3%), sweating (56.1%), and nausea, vomiting, and diarrhea (46.3%). Regarding the emotional impact of being out of their medications, most patients reported anxiety (76.5%), irritability (70.8%), restlessness (59.5%), or insomnia (57.4%) (Table 3). A specific item on suicidality found that 287 (37.7%) had considered suicide after being denied access to their medications. The cited reasons for this were increased pain (100%) and opioid withdrawal (35.5%).


In this article, we have described the results of an Internet-based survey conducted by the NFMCPA. Developed with help from leaders in the field of chronic pain management, the survey was designed to formally study and document the negative experiences of people with chronic pain reported to the NFMCPA in the setting of changes in laws and policies meant to curb the problems of prescription opioid misuse, abuse, addiction, overdose, and diversion. Such laws are attempting to deal with a nationwide crisis of opioid abuse that is taking and ruining lives. However, as we attempt to gauge the success of these policy changes and new laws, we must anticipate and avoid unintended negative consequences for people in pain who are unjustly discriminated against as if they were abusers or diverters.

What is clear from the results reported here is that consistent access to opioid medications, even for those with long-standing prescriptions, is being threatened to the point where a subset of patients is being traumatized in the process. Particularly distressing is the finding of increased suicidal ideation in a population known to have much greater suicide rates compared with the general population.

Additionally, medication agreements frequently ask the patient to agree to fill their prescriptions at one and only one pharmacy (that they, the patient, delegate). This survey suggests that this is getting increasingly difficult for some people with pain to abide by. Further, when physicians come under scrutiny by medical board review, one of the factors that they may be expected to be aware of, and prohibit, is their patients filling prescriptions at multiple pharmacies. With Prescription Drug Monitoring Programs this data is more easily knowable than in the past, though the experiences of people in this survey suggest that forbidding the practice is not as clear cut when availability of medications and ability to fill prescriptions is in flux, or worse, impossible.

Limitations of the Study

The survey has some inherent limitations. First, the survey was not tested for reading levels. This may have led to some confusion by respondents, but how much this limitation impacts the results is unknown. Second, the item generation focused on face validity rather than more rigorous development and item-generation standards due to time constraints and the likelihood that passage of additional restrictive pain care laws was imminent. Third, as with all surveys, those most likely to respond are those with an active interest in the topic (either pro or con), and it is recognized that the generalizability of the findings will be impacted by this responder bias.


A total of 5,159 respondents with either fibromyalgia or other types of chronic pain consented to take part in the survey, which was designed by NFMCPA to evaluate access to pain medications in the current political and regulatory environment. The survey explored the experiences of people with chronic pain during a time when changes in laws and policies meant to curb the problems of prescription opioid misuse, abuse, addiction, overdose, and diversion have become frequent occurrences. Of those who responded, 3,879 (75.2%) reported that they were currently taking a prescription pain medication; a majority (69.2%) reported being on the medications for over a year. A total of 846 (18%) patients noted that they had been denied having a prescription filled by a pharmacist on at least one occasion, with a majority (63.6%) reporting that they had obtained opioid prescriptions at the same pharmacy on more than 10 different occasions previously. The survey results begin to reveal the unintended negative consequences of policy changes and new laws for people with chronic pain conditions, including stigmatization, traumatization, and ostracism.





Last updated on: March 10, 2014
close X