Regulation Without Representation

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By R Carter

Used to be the default assumption was that chronic pain patients were honestly seeking medical care. That’s no longer the case, the government and healthcare profession have successfully redefined that perception and it’s having devastating consequences.

After 2010 perceptions in government and healthcare changed due to a high number of opiate overdose deaths. What hasn’t been established with any clear data is how this applies to chronic pain patients. There just not enough data or funding for research in this area to draw a clear conclusion. So what’s made is an assumption, one based on a mix of data from opiate native patients and illegal drug use. With these kinds of misplaced assumptions, what we’ve seen in the last nine years is a backlash from the chronic pain community and since 2016 a growing number of deaths associated with forced tapering or sudden denials of medication for some who have been on opiates for years.

Without coming out and saying this directly and clearly, what is said leave only one conclusion, treat patient as suspect, guilty until proven innocent.

What started out as a rational goal of reducing opiate related deaths. Over time, turned into something different and I’m still struggling to define what that is. I am constantly putting questions to prescribers in effort to gain some kind of insight into what that something is. Yet after five years of doing so, only one doctor has been able to give a rational answer and his answer was simple and to the point. He’s afraid of the regulatory agencies who oversee this subject of prescribing opiates for chronic pain.

I think this is what all doctors feel and who can blame them. The fines for violating a standard of care setup by a state medical board are stiff. Up to $20,0000 per infraction not to mention the risk of having your license suspended.

This is all fine and good as a deterrent for doctors who willfully prescribed medication for patients who didn’t need it or for those prescribers who did this as a means of addicting patients to ensure they came back for more office visits.

In December 2018 the State Medical Board of Ohio came out with new guidelines for primary care providers prescribing for chronic pain. The guidelines are rational, reasonable and should address the issue for a majority of chronic pain patients. But the feedback I get from other chronic paint patients is that doctors are deviating from these guidelines, expressing them as far more stringent and narrow than what they actually are. Leading me to believe that the guidelines are poorly understood or primary care providers as well as pain specialist are not reading them.

For the doctors I have spoken too, most are relying on the interpretation they get from the professional organization they belong to. And when you read those interpretations, is easy to understand why there is so much deviation from the SMBO guidelines. For example this quote from AMCNO (Academy of Medline of Cleveland and Northern Ohio).

Prescription pain medications (opioids) account for more fatal overdoses than any other prescription or illegal drug, including cocaine, heroin, and hallucinogens combined. The number of Ohio lives lost to unintentional drug overdose has risen from 369 lives in 1999 to 1,765 in 2011, a 440% increase! Prescription drugs are involved in most of the unintentional drug overdoses and have largely driven the rise in deaths. Opioids and multiple drug use are the largest contributors to the epidemic.

With any type of due diligence in reading the research, this conclusion can’t be drawn, there is just not enough data and research to support it. In fact the research that does exists very specifically gives a different interpretation.

Which raises the question why would a professional organisation, one which has a hand in promoting public health for all, want to mislead the public and their members?

This quote form Ohio Department of Alcohol and Drug Addiction Services. Throughout much of the last century, people who struggled with alcohol and other drug addiction were thought to be “morally flawed” and/or “lacking in willpower.” As a result, society came to regard alcoholism and drug addiction as a moral failing rather than a health issue. Today, thanks to decades of scientific research, we know addiction is a disease that affects both brain and behavior.

If addiction is a disease and the sources of chronic pain are a disease or a medical condition, then why are chronic pain patients treated as addicts?

With regards to how prescribers run their practice and treat patients, the line between these two issues is so thin and blurred as to be indistinguishable. Ask any chronic pain patient and they will tell you that when initiating care with a new prescriber they are first treated as though they are drug seeking. That’s the new default assumption, your guilty until proven innocent.

While this is a major pain and inconvenience for some, for others it has been a death sentence. And the first rule for doctors is “Do no Harm”, yet because of the fear factor instilled in prescribers from government agency regulations, out of fear and ignorance, some doctors are abandoning patients.

The results is loss of quality of life, loss of jobs and income, break ups of the family unit, increased burden on welfare and the worst for some, taking their own lives because they been abandoned. How many will have to die before this stops? Aren’t these the kinds of symptoms we see when looking a drug addicts out of control? Only in the case of chronic pain patients, its not a self-induced form of withering away, it’s something that has been imposed upon them by those who have no idea what it’s like to live with chronic pain who act out of fear and ignorance.

Where’s the Representation from the Chronic Pain Community?

As I review the members and minutes from government committees which make these regulations and guidelines, I’m struck by the lack of representation from the group which is most devastated by this trend, that of chronic pain patients. I have contacted agencies and committees in an effort ask this question and lobby for representation from the chronic pain community, only be ignored and dismissed. As a former anesthesia provider and now chronic pain patient myself, who else could have a better perspective from both sides of the issue? Yet I have to assume that because I’m a chronic pain patient, this disqualifies me in the eyes of those making the rules.

As I review the members and minutes from government committees which make these regulations and guidelines, I’m struck by the lack of representation from the group which is most devastated by this trend, that of chronic pain patients. I have contacted agencies and committees in an effort ask this question and lobby for representation from the chronic pain community, only be ignored and dismissed. As a former anesthesia provider and now chronic pain patient myself, who else could have a better perspective from both sides of the issue? Yet I have to assume that because I’m a chronic pain patient, this disqualifies me in the eyes of those making the rules.

Research Funding Disparity

Government recognition of addiction and alcoholism as a disease allows government funding into research and treatment. There is no recognition for chronic pain, subsequently there’s no funding for research and treatment. Leaving chronic pain patients as regulated without representation at a research level as well as by the committees which make up the regulations.

Chronic pain patients are now regulated away from treatment with opioids because the consensus have become that most people are incapable of scumming to the addictive effects of opiates. What little research we have on this question indicate that 3% of less fall into drug seeking behavior and those who are on opiates longer than one year, the percentage is less than 0.3%. This is not an epidemic, this is well within the normal for records we have going back decades.

In our current environment, reports of suicide from patients who have had their medications reduced or discontinued. grows week by week.

Government is the institution established to define and protect equality between individuals and groups. How ironic that government would be the institution guilty of undermining that equality. And all this is happening because many can’t distinguish between chronic pain patients seeking medical care and those seeking another source for their drug use. There needs to be more education, better communication and a clarification by government agencies on the difference between chronic pain and drug abuse.

While some states like Ohio are making progress in this area, others are not. Still, more needs to be done to eliminate the fear prescribers have and balance the needs of legitimate patients by enforcing HIPAA rights and discriminatory practices by some prescribers.

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