Current Access to Opioids—Survey of Chronic Pain Patients
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.
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%).