Survey for Pain Patients

Survey for Pain Patients

How has the change in the classification of opioid derivatives affected you?

How is your relationship with your provider, your pharmacists and others?

Dr. Terri Lewis is conducting an online survey that readers of the National Pain Report are asked to take. She wants to account for the experience of individual chronic pain patients.

(Here’s the link to the survey)

Dr. Lewis, who has been a contributor to the National Pain Report, is a mother and a daughter of chronic pain sufferers, and has been looking at how the health care system is currently constructed, and importantly how it can be changed.

Just this month, she spoke at an International Pain Conference in Chicago where she argued that pain patients and providers need to better work together. (Here’s our story on her talk)

Here’s how she explains it:

“Three issues have become prominent in the national discussion about access to appropriate pain management for the more than 100 million persons who need specialized supports. Health care providers, consumers, and advocates are all struggling to adopt reasonable policy in response to the impact of changes imposed by the rescheduling of certain drugs into Schedule II.

First, in the current climate of insurance regulation, patients have little choice over their selection of pain care provider, particularly if they are in rural areas or if access conditions are imposed by payer sources. The actions of an unscrupulous provider can have significant negative impact on both quality of care and future access to care if or when the prescriber is tagged as abusing processes by regulators.  Recent roundups in a number of states have resulted in dumping of patients with legitimate needs, leaving them vulnerable and without alternatives.  The impact of this process on individuals remains largely undocumented, undetermined, and below the radar screen of health care providers.  

Second, the rescheduling action undertaken by the DEA and FDA in response to the rise in deaths reported as opioid associated has had significant impact on patients who may receive under treatment (less than what is needed) or over treatment (over selection into costly tests and surgical installations) depending on the orientation of the only available provider.  Both increase the risk of medical harm to patients and exposure to secondary injuries adding complexity and additional cost to care, along with increased disability.

Third, patients rely on secondary community systems - pharmacy access, emergency room visits, which results in the accrual of increased latent costs.  Transportation costs, lost care provider work days, and pharmacy rationing (the pharmacy crawl) have deleterious effects not only on conformance and adherence to medication protocols, but also increase stress on fragile resources and reduce the working alliance so necessary to assure intended outcomes.  Many report this has significantly impaired their provider relationships and resulted in them being marginalized by their health care system because of their diagnosis.

The comment period for the draft document issued by the National Pain Strategy working group has closed.  But the experience of individual patients must still be accounted for.  Hearing about the direct impact on patients and the difference this schedule change has imposed on their personal care support remains critical and will help to interpret and refine future approaches.  Sorting out reality from myth remains an important aspect of the work of patient advocates.”

Editor’s Note: Dr. Lewis will share her findings and analysis with the National Pain Report once she collects enough data. We urge you to help her develop a data set.



Authored by: Ed Coghlan

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Suzzanne Nazar

For ten years I have been in nearly constant pain. My multiple Dr’s decline to treat my pain except after a fall and then for 10 days only. My Dr’s collectively along with my pharmacist treat me like a drug addict… Not blatantly, but it’s there. I have fibromyalgia and idiopathic peripheral neuropathy, and due to the lack of balance, head injuries, broken bones. Degenerative disk disease in neck and lower spine and another stenosis. I am forced to take lots of ibuprofen to function at all. It’s making me nauseated and giving me rebound headaches. If the FDA makes get prescriptions for those I think a whole bunch of us will have to go black market and take our chances.

Margaret Scovell

Being that I am in pain every day, it is difficult for me to constantly have to go to the doctors every month. Thankfully I have insurance, but if I did not, I can not imagine the cost! Secondly, I think it is embarrassing to constantly have to give a urine sample. They assume I am doing something wrong, and that makes me feel like I have done something wrong! Getting injured was not my choice, don’t add to my frustrations by assuming I am now doing something illegal as well. I know some do, but not all. Also, it should be up to my doctor and myself as to how much medicine I should get, not the government!! Sometimes I need more sometimes I don’t, it is none of their business. 2. I like my pain doctor, and she has actually done more for me than my regular orthopedist did. But when I go in the office I feel like they are herding cattle….and again, you feel like they are waiting for you to do something wrong!!!