© The Mighty Medicines pills scattered on a prescription pad with a pen

The past five years has been especially difficult for those suffering with intractable medical conditions that cause chronic pain. Even before the 2016 CDC guidelines for prescribing opioids, the social climate began turning against anyone who utilized opioid pain medications, whether for chronic pain or for addiction. Society seemed to make no distinction.

The climate allowed drastic policies and guidelines, which limited or eliminated chronic opioid therapy for legacy patients (intractable pain patients benefiting from long-term opioid therapy). Because of this, many were harmed and some lost their lives to suicide.

Untreated or under-treated pain has resulted in an increase in suicides. Rates among Veterans have shown a significant increase, with chronic pain being one of the main contributors. And in Oregon, doctor-assisted suicides have increased by 25% due to untreated pain. This is a far cry from the statement from 2007 stating that Oregon leads the nation in pain control for patients.

Well-respected experts, chronic pain patients and advocates objected to the drastic paradigm shift and the significant harms asserting the swing was not based on evidence nor was it aligned with the standard of care or best practices. In the past year, nationally, the pendulum has begun to swing back to a neutral position giving suffers hope.

Some changes that could benefit people with chronic pain include:

1. The CDC Clarified Its Guidelines

In April 2019, the CDC clarified its guidelines, stating that they had been misapplied resulting in forced opioid tapers and tapering too quickly, which both caused patient harms. Its guidelines, which were only meant to aid primary care doctors in initial doses of opioid pain analgesics for new opioid patients, were misapplied to limit doses pain specialists could prescribe and restrict dosages for legacy patients.

2. The FDA Acknowledges Harm of Forced Opioid Tapers

April 9, 2019, the Food and Drug Administration (FDA) issued a statement acknowledging harms (including suicide) from forced opioid tapers. The FDA only gives instruction for opioid tapering when the taper is mutually agreed upon between patient and doctor.

3. AMA Opioid Task Force Supports Chronic Pain Patients

April 24, 2019, Patrice Harris, MD, president-elect of the American Medical Association (AMA) Opioid Task Force came out in support of legacy patients by releasing a statement applauding the CDC’s clarification of its guidelines stating they have been “widely” misapplied, preventing physicians from providing the best care to patients.

4. Human Rights Watch Advocates Against Forced Opioid Tapers

Humans Rights Watch (HRW), an international organization that reports on human rights violations, became involved with the opioid epidemic in response to the huge outcry of harm. After investigating, the HRW released a report supporting legacy patients and asserted there is an obligation to respond to this health need and to “refrain” from forced (non-consensual) opioid tapers. Furthermore, HRW stated, “Under the ICESCR’s right to health framework, state parties have an obligation to ‘respect, protect, and fulfill the right of chronic non-cancer pain patients to appropriate pain management.”

5. Washington State Clarifies Opioid Prescribing Guidelines

Oregon’s geographical neighbor, Washington state, has been doing damage control this past year from its previously released rules for opioids. It issued statements and released documents stating that under-treating or refuse to treat pain is just as bad as over-treating. Sept. 20, 2019 it released a letter as its latest attempt at reversing the damage.

In spite of all this, in Oregon, policymakers forge forward forcing many chronic pain patients to question their safety in the midst of known harms from dangerous opioid tapers.

For over a year, advocates have vigilantly voiced concerns at chronic pain task force meetings and now taper task force meetings, through communication with Oregon’s governor, and the state’s senior health policy advisor, testifying at the task force meetings, meeting with the chief medical officer of the Oregon Health Authority, and written comments from experts and patients. There has been one major request­, for evidence-based individual medical care based on each patient’s unique needs, separating those with substance use issues from chronic pain patients and applying different remedies as is appropriate.

Here are just some of the efforts to curb Oregon’s anti-opioid stance, which may be applicable in your own state:

The Human Rights Watch was specifically concerned about harmful policies, proposals and guidelines in Oregon so they wrote a personal letter to the governor of Oregon, along with others, to object to the actions taken against legacy patients. Oregon Medical Association and American Medical Association issued a letter opposing a proposal to force taper some patients off of their opioids. Doctors and experts wrote a letter to the Oregon governor, and others, opposing a proposal that included some forced tapers and to request an evidence-based approach to pain care in Oregon.

However, these requests have fallen on deaf ears. They continue to lump those with substance use issues and chronic pain patients and offer a single remedy, or list of remedies. For example, this was evident, once again, in Taper Task Force meeting material. Not only is there only one taper protocol, the decision to taper or “when to consider tapering” is the same irrespective of whether a person is utilizing opioid medications for pain or if they are struggling with addiction. There is no allowance to return a patient to their previously stable dose of pain analgesics.

The task force also attempted to broaden the inclusion of pain patients into the category of an addiction diagnosis by selectively using DSM5 diagnosis criteria for opioid use disorder (OUD). The task force left out the critical qualifier repeatedly asserted in the DSM5 that states, those using opioids “under appropriate medical supervision.” This means compliant chronic pain patients cannot be diagnosed with OUD.

In addition, the guidelines seem to enlarge an addiction category to include many non-addicted legacy patients by the guideline’s criteria for complex persistent opioid dependence (CPOD). The difference between OUD and CPOD are startling. To be diagnosed with CPOD one only has to have the desire to take opioids for pain, without opioid cravings, no compulsive use, and no harmful use, the patient takes opioids “exactly” as prescribed, and has no social disruption other than from experiencing pain. This is an incredible description and includes all model chronic pain patients.

Amid pressure from advocates and patients, Oregon’s Taper Task Force added a clarifying statement to its updated materials, stating not all patients need to be tapered. But then the rest of the guideline goes on to recommend providers consider a taper for those who meet certain criteria, easily met by the majority of legacy patients. These criteria include:

The patient is on a daily opioid dose of 50–90 MED or higher. The patient has medical risk factors that can increase risk of adverse outcomes, including overdose (e.g., lung disease, sleep apnea, liver disease, renal disease, fall risk, medical frailty). The patient is taking other medications that increase the risk of drug-drug interactions or the risk of overdose, such as benzodiazepines or other sedating medications (e.g., Benadryl, gabapentin). The patient’s history indicates an increased risk for substance use disorder (SUD) (e.g., past diagnosis of SUD, SUD-related behaviors, family history of SUD).

To put this in other words, the majority of legacy patients are on 50 MED or higher of opioids, so that one criterion alone encompasses a huge percentage of patients. In addition, the rest of the criteria includes advanced age (medical fragility — the term they use to describe older people), people who have allergies (take Benadryl) people who have anxiety disorders or need awake oral surgery or any other twilight surgery (benzodiazepine), those who have nerve pain (gabapentin), and those who don’t have SUD, but who have a family member who has it (have an uncle who has SUD, even though you don’t). After including all these, there will be few chronic pain patients who won’t fall within the recommendation to consider tapering.

Why is the narrative the same in Oregon when other states and nationally there’s been some movement?

The task force membership includes a large percentage of addiction specialist who are allowed to make policy for chronic pain patients even though they do not have specific knowledge on this population. The task forces membership doesn’t include chronic pain patient representatives without a substance use disorder The task force recycles many of the same members or representatives from the same organization over and over Those with substance use disorder and chronic pain patients are lumped together and given the same guidelines The public commenting process is often confusing and not transparent There’s been no collection of data on patient harms for current forced taper policies but claim success based solely on the fact that the patients were tapered. Despite agreeing to revisit the guideline this fall, we have yet to see a plan to do so

Despite the evidence and efforts to the contrary, Oregon doesn’t seem to be curbing their anti-opioid sentiment even with the knowledge that it will cause patient harms.

The taper task force guidelines will be enforced for all Oregonians regardless of insurance (Medicaid, private or self-pay). Oregon is a scary place for legacy patients.