The Visible Few Pain Patients
This article, in a slightly edited form, first appeared on Pain News Network on September 7, 2019.
Who Are the Visible Few?
I receive several emails a week from people who ask for help because their treatment options have been limited or eliminated. They are in terrible pain, and they don’t know what to do.
One such person, Sharon Berenfeld, M.D. recently shared her experience with me. She wrote, “Dr. Webster, I came across a publication of yours. It struck a nerve with me. My pain is intractable. I have tried everything.”
She continued, “Before the exam room door even closed, [my doctor] announced to me, ‘If you think I’m just here to refill your pills, you can leave now.’
“I left in tears.
“I was being judged and punished for having a complication from cancer treatment.
“I completely understand the opioid crisis. But I feel impotent to do anything.”
Earlier this year, Fox News’ three-part series, Treating America’s Pain: Unintended Victims of the Opioid Crackdown, showed the terrifying circumstances of people in pain and doctors under siege. One individual’s decision to commit suicide as a result of the crackdown on opioid prescribing embodies the struggles of people in pain and their providers’ inability to meet their needs.
The visible few are the small number of people whose stories have been heard by journalists, media consumers, and government officials. Their stories reflect millions of Americans suffering from chronic pain who live in the shadows and are invisible to most of us.
The needs of people in pain and the challenges providers face when treating people in pain have been overshadowed by the government’s attempts to deal with the opioid crisis. The well-intentioned CDC Guideline for Prescribing Opioids for Chronic Pain has affected the 20 million Americans with severe disabling pain. It also has had consequences for all members of the healthcare system.
Unintended Consequences
The CDC prescribing guideline was supposed to be voluntary. However, in practice, the guideline has been treated as a policy with the strength of a law, and it has had severe unintended consequences. Many people are worse off in its wake. Here is a summary of the most substantial effects of the guideline.
Providers feel pressured to reduce the amount of opioids that they prescribe, regardless of their patients’ individual needs.
Insurance companies set prescription limits based on the guideline. In some cases, they override physicians’ recommendations. That means insurers, rather than doctors, are making decisions about how to treat pain.
Similarly, based on the guideline rather than on doctors’ prescriptions, pharmacy chains may limit the amount of opioids they will dispense.
The Centers for Medicare & Medicaid Services (CMS) and the U.S. Department of Health and Human Services (HHS) have set dosage limits. Providers advocating for patients who need higher amounts must navigate a complicated appeals process.
Attorneys general have used the guideline to evaluate whether a doctor is prescribing for a legitimate medical purpose. Deviation from the guideline has been used to accuse doctors of criminal conduct.
Approximately 70% of physicians have reduced their opioid prescribing or stopped it completely.
In their desperate search for relief, some patients have turned to the street to obtain pain medications.
Where We Are Now
Prescription opioids have been demonized and blamed for our current drug crisis. The CDC Guideline for Prescribing Opioids for Chronic Pain has left a trail of misunderstanding in its path.
Its authors have acknowledged misapplication of the guideline in the New England Journal of Medicine. In “No Shortcuts to Safer Prescribing,” they explained, “Difficulties faced by clinicians in prescribing opioids safely and effectively, growing awareness of opioid-associated risks, and a public health imperative to address opioid overdose underscored the need for the guidance.” They emphasized their intention was to provide guidance rather than to establish a mandate.
In a separate article in the JAMA Network, the guideline’s authors said, “The number of people experiencing chronic pain is substantial, with U.S. prevalence estimated at 11.2% of the adult population. Patients should receive appropriate pain treatment based on careful considerations of the benefits and risks of treatment options.”
There are other signs of recognition that the guideline has been misinterpreted. For example, CDC Director Robert Redfield, M.D. wrote in a letter to Health Professionals for Patients in Pain (HP3), “The CDC is working diligently to evaluate the impact of the guideline and clarify its recommendations to reduce unintended harm.”
The American Medical Association’s House of Delegates passed a series of resolutions regarding the adoption of the guideline. At an interim meeting in November 2018, they stated, “… physicians should not be subject to professional discipline, loss of board certification, loss of clinical privileges, criminal prosecution, civil liability, or other penalties or practice limitations solely for prescribing opioids at a quantitative level above the morphine milligram level thresholds found in the CDC guidelines for prescribing opioids.”
There is also some light being shined on the issue by The Pain Management Best Practices Inter-Agency Task Force. In a statement recently released by the U.S. Department of Health and Human Services (HHS), Vanila M. Singh, M.D., MACM, task force chair and chief medical officer of the HHS Office of the Assistant Secretary for Health, said, “There is no one-size-fits-all approach when treating and managing patients with painful conditions. Individuals who live with pain are suffering and need compassionate, individualized and effective approaches to improving pain and clinical outcomes. This is a roadmap that is desperately needed to treat our nation’s pain crisis.”
As the opioid odyssey continues, there are signs that the visible few are beginning to be heard. This is an important step to helping the invisible millions with chronic pain receive the care they deserve.
Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”
You can find him on Twitter: @LynnRWebsterMD.
Thank you from yet another invisible, but yet highly judged CPP.
Thank you Dr. Webster. I have been off pain meds two months and the pain only worsens. Really don’t know what to do I don’t want to go back.
‘If you think I’m just here to refill your pills, you can leave now.’ The previous statement is certainly familiar to me, and I’m certain many who are reading this have sat powerless, as a physician explains the power of the ‘poison’ you seek, and how you will have no trouble finding one of the many irresponsible pill mill doctors that exist in his or her imagination. Trying to find a compassionate physician was a terrifying prospect decades ago. No one with the facts could possibly have determined that a problem existed then – much less now, when the country is in the grip of intentional misinformation. Thank you Dr. Webster, you are an unwavering light and hope.
Thank you, Dr. Webster….I don’t think things will get better until the DEA/DOJ put out some statements that they will no longer harass doctors. No matter what AMA, FDA, CDC say…until drs. Feel safe prescribing again, things will.not get better.
Dear Dr. Webster,
May I once again express my appreciation for your dedication to those of us with Chronic Pain. Your efforts to bring and maintain an unwavering, steadfast commitment is to be applauded by all of us.
To little to late!! Politicians get the credit for killing many good people and reducing physicians who cared but quit under threats!! I am one— and sorry for having given up!!
Pain patients do not deserve being treated like drug addicts who just want another fix. They don’t deserve to suffer in pain because of this government intervention. It is not their fault that pharmaceutical companies used unscrupulous tactics to enhance their bottom line yet we don’t see them really being held accountable for their actions except for a light slap on the wrist. Pain patients have and are dying due to inadequate and denied pain treatment. It has driven real pain patients to seek dangerous street drugs seeking relief from their pain which usually ends up in their death. Some commit suicide because they just cant live in pain anymore. Pain patients only want to support their families without being on disability and not be looked at like a financial burden. They deserve the right to have some sort of quality of life. As a pain patient I too have been through exactly the same thing with my pain doctor after my first one closed his practice saying he was to close to retiring to deal with all the new restrictions being forced on him by the new government regulations that would keep him from providing adequate treatment to his patients.