US Pain Foundation: Remember the Pain Patient

US Pain Foundation: Remember the Pain Patient

“They didn’t put the voice of the person in pain into the process.”

That’s how US Pain Foundation Founder/President Paul Gileno described the Centers for Disease Control approach to its controversial 2016 Opioid Prescribing Guidelines.

In an extensive year-end interview with the National Pain Report, Gileno said what many critics of the CDC have stated. The process for developing the guidelines was “flawed.”

“I want to have confidence that they’ll see their mistakes, but I’m uneasy because the federal government’s own procedures weren’t even followed,” Gileno said.

Gileno urged chronic pain patients to comment on the CDC guidelines. The public comment period ends on January 13, and as of this writing (December 31), around 1,300 comments have been received. Gileno said if the public outcry is loud enough, telling the CDC “you are hurting people with chronic pain,” it could make a difference. To submit a comment, click here.

But he’s pessimistic that the CDC will change much of the “scary language” he sees in the CDC draft guidelines.

Gileno understands that there is an addiction crisis in the United States—and that abuse of narcotic pain medications exists.

“Opioids are not an end all and be all for chronic pain treatment, but they do help,” he said calling the CDC guidelines an overreaction to addiction and abuse issues.

“We want options for people in pain and the truth is that responsible use of opioids to manage chronic pain works for millions of people,” Gileno said. “It makes no sense to throw away the baby with the bath water by saying that opioids are always a problem. They simply aren’t.”

He thinks this controversy could have been avoided.

“No one from the three big organizations that have the patient and practitioner voices was included in the process. Had they been, the CDC would have heard that we need many tools in the battle against chronic pain,” he said.

The process as it was conducted indicated that the CDC’s conclusions “simply didn’t care about the pain patient.”

He brushed off criticism that organizations like the US Pain Foundation are unduly influenced by pharmaceutical companies that help support the organization.

“We’re not in pharma’s pocket, we’re the voice of the pain patient,” he said. “We just don’t think you should try to exclude options that work for real people.”

In part 2 of our interview with Gileno, he will talk about what he hopes will happen in 2016 to improve education and research into chronic pain.

 

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Authored by: Ed Coghlan

There are 7 comments for this article
  1. lynne at 12:30 pm

    Let the suicides begin… as theyve already started…. n the patient is condemned n treated as a criminal… what a great idea huh… hope u can deal with all these kids…. whose parents took thier life!!!

  2. Heather at 4:11 pm

    Dr. Jeremy Goodwin,
    Your point is well-meaning and I appreciate it as such. I have not taken offense, ever… to the use of the words “chronic pain patient.” I do love the assertion that I am a person with a disease (rather than a diseased person?). However, there was an actual moment when it occurred to me that I am a “chronic pain patient.” It was the strangest of moments, really. It was when I realized I had to have a more in-depth relationship with my doctors, that I had to advocate for myself… and most of all, that I will never, ever be the same again.

    For me, it is in some way a recognition that I will likely live with my pain all of my life in some form in various intensities… but it will always, always be there. While it’s sad, the recognition came after a discussion my doctor had with me about my expectations — that I should never expect to be “pain free” and that his job was not to “cure” me.

    It’s hard to find those words offensive, because they are in line with my perspective — most specifically, that things have changed for me because I live with chronic pain on a daily basis.

    At first, I was a bit taken aback by the scolding you gave the Mr. Gileno. But then I smiled and chuckled a bit. I do realize that other patients may feel the way you do about the “label” but I find it a better coping mechanism to embrace the label. What an odd and differing set of viewpoints you and I have. And I respect you for what you said. It wouldn’t change how things are for me or how I feel. Other “patients with chronic pain” may not agree with me.

    Thanks for your kind respectfulness. It is appreciated even if it didn’t hit home with this particular soul.

    PS – I’ve not given up the fight. Not by any means.

  3. Barbara McDowell at 3:31 pm

    We NEED recognition and a cure for Trigeminal Neuralgia!!!!

  4. Laura at 10:50 am

    Thank you Paul Gileno for being a voice of sanity and good reasoning in response to the recent CDC guidelines. The physicians who specialize in treatment and management of chronic, degenerative and intractable pain as well as the patients must be heard and consulted first most in any guidelines which would so seriously affect the lives of millions of Americans who literally fight every waking moment for their basic survival in this life. I will share this post on FB, in hope that many will take this opportunity to add their comments to the CDC, per the link posted above. People suffering with disability and disease deserve to be treated with the same respect and medical care that is afforded to anyone else with any illness. Patients are not the problem, drug addicts who choose their disease are an entirely different group from people who fight to live life, not destroy life.

  5. Jeremy Goodwin, MS, MD at 10:35 am

    When will you learn that people are not defined by their state of being–well, not wholly–for it is not ‘ the pain patient’ or ‘the chronic pain patient’ but the person or or patient suffering from chronic pain.

    There is a big difference. Those with persistent , life affecting pain are people first and foremost and should be respected as such.

    Is it okay to refer to ‘the lady doctor’ in her professional capacity? No. It implies something different to a doctor in general or to a male one (usually taken as such for granted ).

    Please show some respect. We are talking about real persons here, not diseases walking on arms and legs.

  6. Dave at 10:05 am

    The CDC is part of DHHS and DHHS is largely staffed by those in the health care industry. The fact that we still see articles and plans talking about “patient-centered” or “person-centered” is proof of the fact that the health care industry still hasn’t achieved “patient-centered” or person-centered care. The reason is clear- they are taught to focus on diagnosis and treatments-on profession-centered care. There is no balance of power in the doctor-patient relationship or the nurse- patient relationship, etc- for the assumption is always the practitioner knows best. And so people in pain- just as others who seek health care services are seen as inferior, ignorant, dependent, incapable, etc- they are “othered” by health care professionals and their communications treated as a “vernacular performance”- as if the culture of being a “patient” consisted of folklore, unless they strictly do what the health care professional expects them to do. As Thomas Jefferson wrote- subservience breeds dependence and makes men ripe for the designs of others. Professionals in the CDC, DHHS, in hospitals, in private offices don’t see their clients as equals and expect them to be obedient(more or less).
    I think its mistaken to believe that the CDC in particular wont hear the concerns of people in pain- neither did the 80 who created the National Pain Strategy. When the comment period was opened up for the NPS- they had a list of whom they wanted to comment. That is unethical- for every American has the right to comment on the NPS. he NPS cherry picked some groups to listen to and participate in creating the NPS-and showed no interest in the voice of individuals who were not part of a special interest group. Those individuals far exceed the number represented by special interest groups. And so it is fair to say the NPS intentionally excluded the voice of the individuals- just as the CDC does.
    Its the nature of of health care organizations and government organizations to, at best a have a veneer of democratic exclusion- after all- they believe, their professional views are both necessary and sufficient-and that the views of others who don’t agree are merely mistaken views to be ignored.

  7. Scott michaels at 7:38 am

    whybdoesnt gelano get an interview on 60 min or cnn. he sounds important enough. obviosly were not