Submitted by a Member of The Pain Community.

Since the CDC issued the opioid guidelines back in 2016, they have not only done extreme damage to the chronic pain and chronic illness communities, they have made being a caregiver to my loved one so much harder. What has been happening and continues to happen every day to people who live with pain and chronic illness since the CDC released the opioid guidelines is barbaric and criminal!

It was already difficult and challenging before these guidelines were public. Let’s face it, I am a compassionate human being and love my family; it is an ongoing struggle to witness the 24/7 pain of my life partner.  As a caregiver, I watch her deal with ongoing pain and the added mental strain of not knowing what madness the Federal government, the State, or the insurance company is going to propose next to make her life even more of a “hell on earth”. I have seen abrupt policy changes or other rulings enacted with blatant disregard of how this impacts my loved one, my family and me. My impressions are (all too often) that unfounded opinions and uneducated people in power as decision makers continue to erect life changing barriers to safe, appropriate and effective pain care. The CDC guidelines are no different and are problematic for those living with pain which have become more and more evident over time. They have increased the deterioration of medical decision making—decisions that ONLY her healthcare provider can and should be making with her.

We caregivers have always been on the front lines battling to ensure our loved ones receive timely and appropriate treatments to reduce the pain even if just a little bit. It is no surprise to see that even small positive changes can offer pain reduction which in turn allows them to feel some sense of normalcy and help ward off the looming depression that could consume them. Unfortunately, we are becoming far too familiar with the negative changes that cause the opposite.

I think that the CDC went wrong when they chose to listen to self-appointed experts for recommendations. One example is the choice to listen to addiction specialist who had no education in pain care and who had a personal agenda to get FDA approved pain medications restricted as well as anti-opioid physicians and other stakeholders. They didn’t bother to hear from the real experts: people who live with pain, caregivers or medical professionals in the field of pain management. Where is the balance, fairness and “scientific rigor” in that?

It must be said that the CDC was inundated with medical professionals who specialize in treating pain, primary care providers who are on the front-line when someone first seeks treatment for pain, and advocates who have been in the trenches for years fighting for appropriate treatments and patients who live with 24/7 pain. They all emphasized how the then proposed CDC guidelines would in fact harm those who live with pain. I know, as I was one of them.

I also know that the result, the final publication, has done just that; it has caused more harm. The CDC was warned over and over about how harmful the guidelines would be to the legitimate pain community and the medical professionals who treat pain and the CDC chose to turn away and close not only their minds to the truth but also their hearts!

What I see now are:

• Doctors are afraid to prescribe FDA approved medications, because the DEA is acting like every doctor in the country that tries to care for his/her patients with their medical expertise is a drug dealer.
• Pharmacists are now playing doctor and refusing to fill prescriptions as written by a doctor. More times than not, the pharmacists have known the legitimate patient for years and years and have filled the same prescription time after time with no issues.
• Insurance companies are deciding that they know more about the patients’ medical needs than the medical professional who sees the patient on a routine basis and the insurance company contradicts the medical expertise of the doctor. Some uneducated person sitting in an office at the insurance company now thinks they have the medical expertise and are qualified to tell the doctor what medications he can and cannot prescribe and the dosages.
• Some healthcare professionals who specialize in pain management and other medical fields are telling their longtime patients that the CDC guidelines are the law. Look, ladies and gentlemen in the medical field, we understand this witch hunt by the government scares you as much as it scares patients and caregivers. Please have enough respect for your patients and tell them the truth, tell them you are worried and scared; you owe your longtime legitimate patients who have never had an issue with addiction the truth. Your patients and their caregivers are not the enemy!

To those CDC professionals who ignored the pleas to not combine those fighting addiction and legitimate pain patients under the same umbrella—SHAME ON YOU—I don’t know how you can sleep at night knowing that those guidelines has gotten pain medications reduced and completely removed from legitimate patients who have ABSOLUTELY nothing to do with the addiction!

In my opinion, the real “enemy” is the so-called self-appointed experts that the CDC listened to—the enemy failed “War on Drugs”. I cannot help but question what is really going on.

1. Has the government intentionally let misinformation spread like wildfire to cover up the fact they have never had a good plan to stop the illegal street drugs that people are addicted too and dying from?
2. Has there been intentional public messaging to promote the belief that prescription pain medications are evil and the reason for every addiction and every death? Are they knowingly downplaying that the deaths of those fighting addiction is from illegal street drugs (heroin, fentanyl) that come to the US from other countries?
3. Is the media intentionally spreading the same misinformation and failing to tell the real story because that doesn’t sell…. Instead they continue to report to the whole country that anyone who has ever been prescribed an FDA-approved pain medication is an addict?

As a front-line witness and caregiver, this must be said. “Those who are addicted to street drugs and those living with chronic pain are not the same group of people! Let me say that again a little louder—THOSE FIGHTING ADDICTION AND LEGITIMATE PAIN PATIENTS ARE NOT THE SAME GROUP!

Those who live with unrelenting pain 24/7 from terrible diseases and medical conditions are like my life partner. These people are not standing in the dark alley selling their prescribed medications. They need those medications so they are able to function every day to take care of their families, to be able to work, to have some type of normalcy in their lives. They guard those life-giving FDA-approved pain medications with everything they have because that is one of the only things that allows them to stay one step ahead of the pain–that pain which can take them to such dark places that once entered is extremely hard to find the way back to the light.

Please tell me this!!

When did it become acceptable to abandon an entire group from having access to medical professionals who have the expertise to help them deal with a life of chronic pain with FDA approved medications?

When did it become acceptable to put the lives of those fighting addiction ahead of those fighting chronic illnesses and pain, like my loved one?

When did it become acceptable to tell someone diagnosed with a painful medical disease where their body is actually deteriorating from the inside and leaves them in extreme pain that they cannot be treated with a medication that can ease the horrible pain—even if only a little bit? This is what I witness helplessly every day.

This caregiver is angry and wants to scream to the country—Stop this madness!