Pubdate: Sun, 07 Sep 2014
Source: Washington Post (DC)
Copyright: 2014 The Washington Post Company
Author: Janice Lynch Schuster
Page: C4


For 18 months, I have lived with chronic pain - burning mouth 
syndrome - triggered by oral surgery and nerve damage. On my worst 
days, it creates the constant sensation of having scalded my tongue 
and palate. On good days, it feels as though a binder clip was 
snapped on the tip of my tongue. It has been a miserable experience, 
and I try my best to manage the pain.

Opioids, once hard to get, now are widely prescribed for an array of 
conditions, including mine. Americans consume about 99 percent of the 
world's supply of one such opioid, hydrocodone. Widespread abuse of 
prescription painkillers has led to addiction and, too often, 
overdose deaths. Despite convincing evidence that people who live 
with chronic pain need help from interdisciplinary pain management 
teams, which could offer help with physical and occupational therapy, 
social supports and more, most pain patients do not receive it. 
Instead, tens of millions of us find our way to pain experts who, 
almost without fail, prescribe opioids.

Once on the opioid train, we live with constant scrutiny from its 
conductors - our own fears of dependence and addiction and the 
suspicion of physicians, their office staff, pharmacists and families 
and friends who try but cannot understand our experience.

I have tried many pharmaceutical treatments and complementary 
therapies. Because my pain is centralized - it is really coming from 
my brain, not my tongue - it seems to be tamped down by exercise or a 
full night's sleep. I still rely on painkillers, though, to make it 
through days when pain makes it hurt to eat or talk or breathe.

I almost felt relieved this April when I heard that Maryland, my home 
for most of my 52 years, had legalized medical marijuana. Medical 
marijuana could never replace opiates, one pain expert told me, but 
it could very well reduce opioid doses and frequency.

A study in the Journal of the American Medical Association finds that 
states that have legalized medical marijuana experienced an almost 25 
percent mean reduction in opioid overdose deaths. The authors 
acknowledge that they do not know the interaction of policy with use, 
but some correlation seems likely.

I see my pain doctor every month. I dutifully follow all 
recommendations. I exercise often. I've worked on relaxation and 
meditation and stress reduction - and still, my pain persists, and 
so, too, my need for medicine.

These monthly visits invariably include enduring being chastised by a 
pharmacist who might or might not fill my prescription. Some 
pharmacists do not have an adequate supply of my medication, and some 
refuse to call other pharmacies to ask what they have in stock 
because all pharmacies, it seems, fear robbery. At one point, staff 
at my doctor's office suggested I "drive around" until I found a 
pharmacy to fill it.

I have talked to pain experts about the chance of medical marijuana 
helping me, and I decided to broach the subject with my pain doctor. 
I planned to ask for a time-limited trial, to see whether THC, the 
active ingredient in marijuana, would have any salutary effect on me. 
I worried about how it would be dispensed, knowing that, with my 
mouth pain, I could hardly smoke it. I was anxious about how the pain 
doctor would respond.

Those questions were almost irrelevant. It turns out Maryland has 
just begun a lengthy process in which the Medical Marijuana 
Commission has invited public comment on proposed regulations. 
Leaders want to launch a safe and effective program, but by some 
estimates, patients will not be able to try marijuana until late 2015 
or early 2016. The full document, more than 80 pages, details the 
very specific circumstances in which it can be prescribed and by whom 
and a process for licensing up to 15 dispensaries.

I asked my doctor what would happen if I went to another state and 
bought some to try. He assured me that a urinalysis would reveal this 
and that I would be removed from his pain practice. That seemed too 
great a risk for me to take, especially not knowing whether marijuana 
would work.

I am all for patient safety, and I have no desire to be a guinea pig 
for pain management. But a year or more with no real alternatives? At 
least I can live with my pain; it will not kill me (although some 
days, it does rob me of my joy). But for patients with severe and 
near-constant seizures, medical marijuana promises to be a lifesaver. 
Why deny them access to treatment?

Much of the debate over medical marijuana smacks of the moralizing 
and stigmatizing that pain patients experience as we try to find 
better ways to function. And while insurers cover medications and 
procedures, they are less willing to pay for the "soft" treatments 
that might really make a difference. If medical marijuana opens some 
sort of third way, I'd take it. What do I have to lose - other than pain?

Janice Lynch Schuster

Riva, MD
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