A patient’s opposition to the anti-opioid movement

I recently read an article — “California Doctors Alarmed As State Links Their Opioid Prescriptions to Deaths” — that infuriates and frightens me I’m furious that doctors are being persecuted for opioid prescriptions written years ago, and frightened that my doctor here in California may be pressured to stop prescribing them for my painful genetic disorder (Ehlers-Danlos).

Twenty-six states have already implemented arbitrary restrictions on our appropriately prescribed opioids, but the California medical board’s project is even more of a nightmare:

1. Comb through the state’s PDMP for the last three years to find links from people who recently died from an overdose of illegal drugs to a doctor who prescribed them opioids for any reason at any time during the last three years.

2. Then review the doctor’s records for this patient and, if the CA medical board doesn’t agree with some aspect of this long-ago prescription, threaten the doctor with future prosecution.

3. In the meantime, demand the doctor produce a “written summary of the care he had provided” (justification) due in only two weeks and fine him $1,000 each day he’s late with his report.

This certainly makes me better understand why doctors are so afraid to prescribe opioids, even when patients are suffering from incurable and painful conditions. I can’t imagine how I’d have reacted upon receiving such a career-threatening and legally intimidating letter while I was still working.

The idea of a “standard dose limit” for a medication like opioids is absurd. It’s like setting a standard cooking time for a roast without specifying the weight of the meat (amount of pain) or temperature of the oven (individual’s ability to metabolize opioids).

In its own guideline from 2013, the medical board advised that “for certain types of pain, opioids were the cornerstone of treatment and should be pursued vigorously.”

This is, of course, still the truth for intractable pain that cannot otherwise be relieved, like from sickle cell disease or my own connective tissue disorder.

I’ve heard from so many other pain patients these days that their doctors only initiated opioid therapy as a “last resort” after many non-opioid treatments were tried and failed and then just for patients for whose pain these medications are effective. Even so, opioids are usually only one of multiple pain management strategies a patient will use.

The CA medical board seems to suspect doctors of negligence if they didn’t perform a complete history, physical exam or repeated testing before each 30-day prescription, even when the same dose of the same pain medication has been prescribed for the same intractable pain condition for years.

This is no different than how so many other drugs are prescribed for ongoing conditions, like high blood pressure, high cholesterol, or depression. Especially when we’ve been seeing the same doctor for years, such repetitive documentation of the obvious and unchanging seems a waste of time.

Like most chronic conditions, chronic pain rarely improves and usually worsens with age. Once the pain has been investigated, sometimes diagnosed but often not, and the medically appropriate decision has been made to start opioid therapy, the necessary dose will rarely decrease and can be expected to continue forever.

That sounds crazy to people who don’t understand what a positive difference opioids can make for us, how they are literally life-saving for someone like me who faces a lifetime of unrelenting pain. For anyone else but the bureaucrats trawling through long-ago prescription records, the reasons for an ongoing opioid prescription should be obvious: unresolved pain.

The article quotes, “But it’s unclear if the overall effect of the project will be good for patients.”

No, it’s not unclear at all: forcing doctors to reduce the dose of opioids a patient is prescribed without a medical reason is always bad for patients. I can’t understand how mandated changes in medication regimes that are made against a doctor’s judgment can possibly be imagined to benefit patients.

The CDC’s opioid prescribing guideline is intended only for primary care physicians, not pain specialists, and for patients who haven’t already been taking them for years and decades, like I have. Yet, these caveats are ignored as anti-opioid advocates rush to make the guideline’s suggested opioid dose risk boundaries (at 50 and 90 MME) into absolute limits for every patient in every situation.

I don’t believe the current punitive policies were either unforeseeable or unintended when the CDC guideline authors chose to quantify that which is not quantifiable, namely chronic pain and its relief. Universally mandated dose limits ignore the complexity of patients, our genetics, body chemistry, mental state, and lifestyle, to focus only on a single number.

The amount of pain relief achieved by a specific opioid, at a specific dose, at a specific time, for a specific patient can vary by a factor of 10 or more: some need only 30 MME per day, others may need 300 and even up to 3,000 MME; I know pain patients at both extremes.

Even worse, these dose limits on pain relief are targeting the wrong substance and the wrong people. The government’s own data shows that the majority of “opioid” overdoses are from combinations of illicit street drugs, not from opioids prescribed to pain patients.

Trying to stem illicit opioid overdose deaths by mandating restrictions on opioids for patients in pain is only a cruel experiment fueled by ignorance and fear.

Angelika Byczkowski is a patient with Ehlers-Danlos syndrome who blogs at EDS Info.

Image credit: Shutterstock.com

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