By Ed Coghlan
“The pain patient in America feels unheard and doesn’t believe that our government even cares about them.”
Those words from Paul Gileno, Founder and President of the US Pain Foundation which shared results of an online poll it conducted with some 1900 pain patients.
The distrust of the new CDC Guideline for Prescribing Opioids for Chronic Pain is overwhelming.
- 95% says they think the guideline will diminish the quality of pain care
- 96% believe the guideline will hurt access to care
- 94% believe the guideline will increase the stigma of people living in pain
The overwhelmingly negative reaction is not surprising given the protests the pain community have already had regarding the CDC proclamation.
“Patients are so frustrated about what’s happening to them,” Gileno added. “We need to stand and say this is absurd and discriminates against people in pain.”
The emphasis on opioids has also blurred other access and quality issues associated with the care that pain patients are - or are not - receiving.
“People who favor these guidelines would have you believe that all pain patients use opioids, which isn’t true,” said Nicole Hemmenway, Vice President of the US Pain Foundation.
As another survey respondent said about the overemphasis on opioids, “You should stop equating pain treatment to opioid prescriptions. There is much more to pain management than opioids but that information is not getting out and that is harmful to patients. Patients need to be self-empowered to manage their pain and live their lives.”
For Gileno, a pain patient who founded the Foundation which is now the largest pain patient advocacy organization in the U.S., it is the message that the patient is receiving from our government that is troubling.
“People in pain are saying, talk about us and our pain and stop talking about the medicine we take.”
Some of the people who took the poll are also steamed that alternative therapies often aren’t covered by the insurance companies.
As one wrote, “Start asking the CDC and other governing organizations to demand that insurance cover other recommended treatments, such as massage, acupuncture and aromatherapy. It is unfair to recommend these treatments, take away what we have now, and refuse to pay for the new alternative.”
The US Pain Foundation also asked what people think should be done to make the case about what they believe is the inequity of the new guideline.
They want to make a statement.
As one said, “What we need is a social uprising campaign to bring everyone together and fully informed on each of the different policies in order to make change happen.”
US Pain is going to announce an effort along those lines in the near future, according to the two executives we spoke with.
The distrust of the government also came through surprisingly in how they view the National Pain Strategy which was released the same week as the CDC Guideline.
By a nearly 2-to-1 ratio, respondents says it’s bad news for people in pain and 58% said it would worsen care of people in pain.
“That’s disappointing and shows we haven’t done a good enough job of promoting the importance of it,” said Gileno. “The National Pain Strategy represents the first time that people with pain have been validated by the government.”
The National Pain Strategy was hailed as a potentially transformative moment for how pain is assessed, treated, and taught since it was released, but not much has been publicly shared about how implementation is going to happen. We reached out this week to the NIH about next steps with the strategy, but have not yet heard back.