CDC Should Listen to Pain Patients

By Shaina Smith, Guest Columnist

In the wake of the release of the Centers for Disease Control and Prevention's opioid prescriber guidelines, patient advocacy groups and chronic pain patients have been anything but silent. For U.S. Pain Foundation, the process by which the guidelines were crafted seems to have left out a significant part of the equation: chronic pain patients.

When it comes to patient care, we are not alone in this battle to advocate on behalf of those who cannot speak. There are like-minded organizations working diligently to ensure the basic rights of the chronically ill. What we are finding within the nonprofit realm, however, is that higher commanding entities, formed to support the health and well-being of patients, are creating additional hurdles for those they should be helping.

Closed door conversations without consideration of the impact such discussions and decisions can have do not create improved methods that will be embraced by pain warriors. On the contrary, they work against the patient and will cause potential harm.

Working alongside U.S. Pain Foundation volunteers known as Pain Ambassadors, I hear too often chilling and heart-wrenching stories about insurance companies bickering over who will cover what prescription (if they have insurance at all), along with state laws that create additional roadblocks to fair treatment and access.

When I learned of these guidelines, I immediately thought of all those individuals who have already messaged me, begging that we come up with a plan to provide fair access to the treatment they were seeking. After reading the survey results generated by Pain News Network and the Power of Pain Foundation, it is clear that the window for providing fair access and treatment for chronic pain patients is closing.

But there is always hope and ways we can unite our voices to gain back a sense of balance in the way patients are treated by healthcare providers, regulators and lawmakers.

Perhaps the most alarming statement made by over 2,000 participants who completed the survey was that the vast majority feel the CDC guidelines would be more harmful to patients than helpful. This statement is supported throughout the survey results; many fear there will be a rise in pain patients committing suicide, and believe the guidelines will not resolve the misuse and abuse issue at all.

The results are not surprising. While the war on drugs has taken the media’s attention by the horns, patient advocacy organizations like U.S. Pain Foundation have been fighting their own battles on behalf of the brave pain survivor; seeking fair and timely treatment, access to integrative and prescription therapies (not exclusive to opioids) and fighting societal stigmas.

Although we are grateful for lawmakers taking a stance to promote easier access to treatment through the elimination of unjust practices such as step therapy and specialty tiers; there are still many proposals written with good intentions that will potentially cause negative impacts to the 100 million Americans living with chronic pain.

Sadly, the CDC guideline for opioid prescribers is one such proposal. It aims to alleviate misuse and abuse, and attempts to be an educational tool for healthcare providers, but also attempts to take the place of a patient’s treatment plan crafted by that patient and their doctor.

U.S. Pain Foundation has for years prided itself in becoming involved in proposed legislation to ensure the patient-doctor relationship is not hindered by regulations that second-guess the doctor’s initial findings, diagnosis and treatment plan for each patient. We will champion for similar models as the CDC continues revising its prescriber guidelines.

In reading the survey results, it is clear that there are many variables which were not considered in the guidelines. One such variable would include insurance coverage for additional treatments if a patient’s doctor follows the guidelines and decides to no longer prescribe opioid medications.

When asked if their health insurance covered non-pharmacological treatments such as acupuncture, massage and chiropractic therapy, 54% of survey participants stated their insurance did not cover such treatment. I shake my head while reading these answers as I find it hard to believe that in this day and age we are still fighting for basic patient rights to access modalities that may lessen a person’s suffering.

Patients Worried What Their Doctors Will Do

Where are pain patients to turn if these guidelines are put in place and they are not even given alternative means to offset their discomfort?

It is inevitable that many primary care physicians or pain specialists will become fearful if they decided to continue prescribing opioids once the guidelines are in full effect. The survey results clearly reflect a large group of worried pain sufferers whose gut reaction is telling them that their doctors will prescribe opioids less often or not at all if the guidelines are implemented.

Moving forward, the nation can learn from the failed attempt at including the voices of those who would be directly impacted by guidelines. When I say failed, I am speaking of the lack of communication between the CDC and organizations that are fighting access issues on a daily basis. I am speaking of the pain patient who was not privy to join in the CDC’s webinar and has not been given a clear understanding of the CDC’s intent.

The CDC should see the concerns spelled out in the survey and the impact the prescriber guidelines could have on patients. Had the chronic pain community been more involved with the development of the guidelines, less concern would be shared among advocacy groups and patient-centered organizations within the United States.

How each proposed guideline may impact a person’s mother, father, chronically ill child, grandmother, sister, husband or friend should have been expressed and explored further. The CDC should have included patient advocates and pain survivors to lend their expertise during the development stages of the prescriber guidelines.

After reviewing the survey results, U.S. Pain Foundation’s National Director of Policy and Advocacy Cindy Steinberg said, “The overwhelming feeling of survey respondents appears to be that the CDC is discriminating against people with pain.”

“Chronic pain sufferers are very worried that if these CDC guidelines go forward, they will not be able to access a treatment that they can rely on,” she added. “They are concerned that these guidelines will be very harmful for them and that they will lead to a lot more suffering for people with pain.”

U.S. Pain Foundation supports all treatment options that will lessen a person’s suffering. Reducing options, which will be the case as healthcare professionals will likely follow guidelines implemented by the CDC, only exacerbates an already existing battle for chronic pain patients.

Pain warriors are unfortunately made to feel that their pain is not real, their attempt at finding relief makes them drug seekers, and they should fail first at other options before receiving the care agreed upon by their doctors. Everyday obstacles faced by chronic pain patients, including me, cause added stress and hardships.

The CDC should consider the already struggling pain survivors before moving forward with guidelines that would impose additional adversity on the pain patient.

Shaina Smith is Director of State Policy & Advocacy and Director of Alliance Development for U.S. Pain Foundation Inc.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.