Wednesday, July 27, 2016

Ontario Joins War on Pain Patients: Opioids, Stigma, and Human Rights

I used to start the day crying in the shower. The pain was so great that waking up and beginning to move was torture. So I sat in the shower, salty tears mixing with the fresh water. Every day.

And then my doctor gave me a prescription for opioids and the pain subsided. No longer did I start the day by dissolving in tears. Instead, I hummed in the shower, looking forward to my day.

I have used opioids for 12 years now and at no point have I been addicted or stoned. I take these medications for strong pain, which means they have something to do other than make me high. Namely control the pain so I can get on with my life. Because of these and other medications, I am able to be an active part of my family, nurture my friendships, volunteer in my community, and do the kind of work that enables me to pay taxes and feel that I am a productive member of society.

I’m not alone. For thousands of people who live with chronic pain, opioids are a literal lifesaver. Without them, they would not be able to live their lives, instead drowning in pain. Many would be suicidal.

The many ways of stigmatizing pain patients
And we are increasingly stigmatized. It is assumed that we are addicted. In a Toronto Star article about an opioid abuse survivor cycling across Canada to raise awareness, the reporter used the term opioid user in a context where they should have written opioid abuser or opioid addict. At best, it is lazy journalism. At worst it is an indication of how profound the stigma has become.

The doctors who prescribe these medications are viewed with suspicion and regulated so tightly that they have limited options for treating their patients. And the medication that controls our pain is becoming ever more restricted.

Case in point: in six months, the Ontario Drug Program will stop paying for certain high-dose opioids, in an attempt to reduce accidental overdoses and addiction. According to statements made by Ministry representatives, this will deal with the problem of “overprescribing” that contributes to addiction. 

Many of the articles about this piece of news included comments from the Ministry of Health, as well as addiction specialists. Only the Globe and Mail included a quick quote from a palliative care specialists, and followed up with a more in-depth article about the impact of this news on people who live with the kind of pain that warrants these kinds of medications. None of the others included the point of view of people who use these medications legitimately (Toronto Star, CBC, I’m looking at you. The Toronto Sun gets smacked, too, for belittling the concerns and needs of people who have chronic pain or receive palliative care).

Lazy journalism that colludes in creating stigma.

Real facts about opioid addiction potential
The fact that opioids inevitably cause addiction has become a truism. But guess what: it's not inevitable. One meta-study showed that when prescribed and taken correctly, opioids result in addiction in one quarter of one percent of cases (1). Another (Canadian) meta-study showed that when the sample included people who had previously been addicted — the biggest risk factor for addiction — rates rose to a whopping 3.3 percent (2).

In other words, when these medications are used correctly by physicians and patients, 97 percent or more do not become addicted.

And that’s the crux of the matter here. Correct usage. Prescribed correctly. Quotes from doctors and Ministry officials indicate that this policy change is designed to limit overprescribing by doctors, a legitimate problem.

The Ministry of Health had two options. One was to educate doctors so they know when and how it is appropriate to prescribe opioids, and so they can educate their patients on how to avoid overdose and addiction. The second option was to remove access to these medications for people who live with high levels of pain, or who may be receiving palliative care — the populations also more likely to require the Ontario Drug Plan.

Not surprisingly, they went for option two.

The Ontario Minister of Health calls it an “important first step” by Ontario’s Minister of Health. Clearly more changes will follow that further restrict access to the kinds of painkillers that have a potential for addiction, but also a great potential for enabling people who have high levels of pain to function, even enjoy their lives.

One such change could be the adoption of an opioid prescribing policy, such as thone much lauded one recently developed by British Columbia, which is based on the national prescribing policy in the US. These policies urge doctors to focus on non-medication treatment of pain and if stronger medication is required, to start on a low dose and only give patients a few days` supply.

Again — and really, do I have to say this? — the realities of living with high levels of pain are not considered at all. If you have the kind of health conditions that cause this kind of pain, non-medication treatment may be part of what you are doing for pain, but it does not take the place of medication. As well, coming back to your doctor after a couple of days is next to impossible. And, quite frankly, unreasonable. Likewise if you are taking opioids for palliative care.

Pain patients and human rights
And I could go on. In story after story after story, pain patients are ignored, excluded, and their needs dismissed. This level of repeated and concerted stigmatization of a group of people who have done absolutely nothing to deserve it is heinous. Restricting access to treatment results in those of us who live with these kinds of medical conditions being exposed to the kind of pain that can only be called torture. The kind of pain that make people take their own lives.

The Declaration of MontrĂ©al bit found that “pain management is inadequate in most of the world.” It declared that access to pain management is a fundamental human right.

Opioid addiction is a problem that needs to be addressed with a great deal of thought and understanding of the issues involved. Not by bulldozing across it, in the process trampling on the rights of people in pain to have that pain treated in the best possible way, a way that may include high doses of opioids.

     (1)    M. Noble, et al., “Long-term opioid management for chronic noncancer pain,” Cochrane Database of Systematic Reviews 1 (January 20, 2010): CD006605.
     (2)   The National Opioid Use Guideline Group, Canadian Guideline for Safe and Effective Use of Opioids for Chronic Non-Cancer Pain (2010): 10.

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Friday, July 22, 2016

Photo Friday: The Photos That Are in My Mind

I love my camera. It is a really excellent compact camera (a.k.a. point-and-shoot), with a killer zoom. The latter is really important when you can’t always get close to what you’re photographing.

Nonetheless, I have been drooling at The Boy’s camera for the past two years. It’s a Sony Alpha, and it’s as close at DSLR as I can get and still lift/operate it (with some of the lenses, not all). But it didn’t belong to me, so I only borrowed it occasionally. (click photos to embiggen)

Every time we’ve gone out on one of our adventures, carting our own cameras, we’ll spend some time looking at each other’s photos afterwards, grumbling about how we hate the other person. Me because of the things that camera can do. Him for the exact same reason (aforementioned zoom).

For a while now, my beloved has been talking about upgrading, telling me that I’d get his camera when he did. I’ve tried to be relatively restrained about asking when he was going to upgrade — dignity is important, isn’t it?

And then last week, it happened. And I am now the very happy owner of a Sony Alpha. It’s a bit too heavy for me to lift, but I do it anyway. Have been wrecked repeatedly as a result, but it’s worth it!

What makes it different from my camera is the quality of the images. It has a much better lens and the result is photos with a lush softness, yet as crisp as a newly starched shirt.

It also helps me do nifty things with macro shots (I luuurve me some macro photography), shallow depth of field (oh, yum), and bokeh (haven’t begun to bokeh!). And what it does, more so than any other camera I've ever owned, is take the photographs that are in my mind. And that connection, the flow between what I envision in my mind and what actually shows up is a pretty spectacular feeling.

Which is not to say that I have disowned my old camera. It still has a better zoom and I can use it longer without getting wrecked.

If you see a woman in a wheelchair juggling two cameras, that’d be me!

Tuesday, July 19, 2016

Book Review You

“You should own what you love.”

Joe Goldberg is in love with Beck (first name Guinevere, can’t blame her for going by her last name). So naturally, he tries to woo her and that starts with research. The kind of research that involves watching her and hacking her email, and that’s just for starters.

You, an absolutely brilliant debut (!) novel by Caroline Kepnes, is about Joe and his pursuit of Beck. It’s also about Beck and her friends, who we get to know intimately through their emails. It’s a story of obsessive love and it is in so many ways recognizable. Isn’t therean element of obsession every time you fall in love?

The book starts like this:

"You walk into the bookstore and keep your hand on the door to make sure it doesn't slam. You smile, embarrassed to be a nice girl and your nails are square and your V-neck sweater is beige and it's impossible to know if you're wearing a bra but I don't think that you are. You're so clean that you're dirty and you murmur your first words to me - hello - when most people would just pass by, but not you, in your loose pink jeans, pink spun from Charlotte's Web and where did you come from?"

And right there, I was hooked.

The whole book is like that — it sounds like stream of consciousness, but it isn’t. Underneath this writing that describes exactly what Joe is thinking, which like with most of us can be a bit rambling, is the most pristinely tight writing. From a technical and artistic point of view, this author is one of the best I’ve ever read.

And it all gets much better by the narration in the audiobook. Read by Santino Fontana (such a great name), who appears to have been born to read this book. At no point does he falter, there are no re-reads that gets copied on top of the original, yet sounds sort of different. And more than that, he doesn’t read the book. He becomes Joe, embodies him, and this stream of consciousness writing sounds like Joe talking. Fontana’s inflections are perfection, disturbed, subtly conveying Joe’s emotions, whether he is smiling and happy, or enraged. Fontana also perfectly captures the accents of young women in the emails from Beck’s friends. And I could go on. I have read a lot of good audiobooks, but this man is at the very top.

Alternately creepy, chilling, and heartbreaking, You is one of the best audiobooks I have ever heard, and maybe one of the best books I’ve ever read. It does feel a bit weird to so highly recommend a book in which the protagonist is such a strange, disturbed man. And it is deeply strange to realize that you come to care about him, like him, forgetting how disturbed he is. And then you are reminded and that feels even stranger, but you can’t put the book down — it has sucked you in so deep that you need to know what happens next.

I devoured this book, and when it was over I was both relieved and disappointed. Relieved because of the intensity of the experience, and disappointed because it was hard to let go of a book that had been so amazing.

Go get this one And make sure you get the audiobook.