Friday, September 26, 2014

Chronic Pain, Opioids, and Quality of Life: A Guestpost by Dan Malito

September is Pain Awareness Month in the US. One of the crucial issues to people living with high levels of chronic pain is the ability to have access to opioids. Yet, there are so many misconceptions that block that access. To help raise awareness and understanding about what it’s like to live with the kind of pain that requires opioids, I asked Daniel P Malito, author of So Young: A Life Lived with Rheumatoid Arthritis, to do a guest post on the topic. I’m very happy to say that he agreed! Please share his wonderful post as widely as possible. And while you’re at it, check out his book. It’s an amazing memoir of his life with RA.

Opioids.  The word conjures up visions of junkies in back alleys offering to sell a broken TV just for a half pill of Oxycontin.  It’s no surprise either, the government and other media outlets have spent countless millions telling the country about the prescription pill epidemic and its insidious effect on regular people.  Now, whether or not I believe that America’s pain med habit is as bad as they say, it doesn’t really matter.  What everyone seems to forget is the effect banning opioids will have on people like me, those who count on narcotics for quality of life.

There are many here in the U.S. who now believe that anyone who takes Oxycontin is an addict, and that there are other drugs that can be prescribed in its place.  Well, I’m living proof that this is untrue.  My pain doctor and I embarked upon a two-year quest to find a combination of narcotics that worked best to control my pain, and no matter what we tried, we ended up back where we started – Oxycontin and oxycodone IR (instant release).  For those who don’t know, Oxycontin is just a concentrated, time-release form of oxycodone.  The reason I take both the time-release version and the instant-release version (oxycodone), is because current pain treatment theory says that patients should have one pill to reduce overall pain, and one pill to take for acute, “breakthrough” pain.  The overall pill, Oxycontin, is taken three times a day, and lasts for eight hours at a time, which is part of the reason why it is so popular with addicts.  They can get a concentrated high from just one pill.  For me, though, someone who uses Oxycontin the way it is prescribed, it provides all day relief from pain severe enough to make most people stay in bed for months.

The current social attitude towards pain medicine is getting worse every day, and for anyone who studies history, it is quite easy to recognize that this is the fervor that comes before a product is banned.  I do believe this is the direction we are heading in, and for me, that would mean the end of life as I know it.  Let me break down exactly what my day would be like without Oxycontin.

First, I’d wake up in pain.  There’s no two ways about it.  I’d awaken with my joints aching, my back on fire, and my muscles sore.  Doctors like to quantify pain on a scale of 1 to 10, so I’d say that it would be a 10, most definitely.  The agony of bone rubbing against bone in joints that no longer have cartilage to cushion them would be experienced, in full, the minute I stepped off my mattress.  It’s a pain I hope none of you ever have to experience, and my pain medicine only alleviates about 70% on a good day, but that’s enough to live my life.

That’s assuming I was able to get to sleep at all, which is very unlikely without having narcotics to help.  When most people go to bed at night, they sleep soundly and get up once or twice to go to the bathroom or get a drink.  I get up every four hours to take another dose of pain medicine, because it’s just about the only thing that allows me to get to sleep.  When you have a disease like rheumatoid arthritis, the illness is much more than the sum of its parts.  What I mean by this is that R.A. has a systemic component that is difficult to put your finger on, but it makes life so much harder when this general, overall malaise is not counterbalanced by narcotic pain medicine like Oxycontin.  The severity of this uneasy, general pain varies from day to day, but it never goes away completely, and it can easily be the cause of a day spent in bed.  Without anything to combat this wonderful facet of my disease, I’d spend at least half of my time doing nothing at all but trying to weather the phantom, nebulous, pain that comes and goes with no rhyme or reason.

Talking about a general overall pain brings up another concern about doing without narcotics.  The “w” word.  Withdrawal.  Everyone who uses narcotics for pain control has to live with this demon.  Our bodies become physically dependent on the pain medication we take, and we are unable to go without it for very long.  Doctors claim that withdrawal doesn’t begin until 24 hours after discontinuing narcotics, but those of us who use high doses know that withdrawal symptoms can occur as soon as 8-10 hours after we have missed a dose.  It is difficult to explain exactly what withdrawal feels like, because just like the overall malaise R.A. causes, the symptoms are not acutely localized.  The best way that I can describe it is that when withdrawal hits, you feel like someone has shoved you into a freezer in your underwear, and while you are in this freezer, you also feel like someone has tied a knot in your gut that you simply cannot untie no matter what you do, and that’s just the beginning.  After a day or so, the real trial begins, and you vomit, sweat profusely, shake, and if you are very unlucky, your heart can even give out.  I know this because during one of my hospital stays, the nurses neglected to give me my pain medicine for an entire night, and I almost died the next morning.  If they hadn’t given me a massive dose of morphine when they did, I would have suffocated.  That’s withdrawal.

This is just a small taste of what can happen if those of us who rely on narcotics have our medication taken away.  Yes, some people chose to abuse these medications, but that is true of anything.  There are people who abuse over the counter sleeping pills – you can’t ban it all.  The simple fact is that narcotics are just another medication that helps to give people like me a quality of life that we would normally be unable to enjoy.  Unfortunately, Oxycontin has become a four-letter-word, and some very unfortunate incidents involving addicts have been held up to show the evils of prescription pain meds.  The truth of the matter is, though, that those of us who use pain medication to control actual pain have an addiction rate of below 3%.  If our narcotics get taken away, though, we will suffer a serious loss of quality of life, and that’s 100% a guarantee.

Thanks so much for sharing your reality with The Seated View, Dan!

Dan Malito is the author of So Young: A Life Lived with Rheumatoid Arthritis. You can read more of his writing on his personal blog, his blogs for CreakyJoints and at Huffington Post.

Wednesday, September 24, 2014

Mayoral Debate on Disability Issues

Earlier this week, I attended a mayoral debate on disability issues. For those not familiar with the Toronto political scene, we have a municipal election coming up in about a month and the candidates have been debating up a storm. The main contenders for mayor are John Tory, Olivia Chow, and Doug Ford (taking the place of his brother, Rob Ford). Doug was a no-show on Monday, which was no surprise considering his past statements about people with disabilities. Or maybe this particular part of his constituency just isn’t important to him. Which is a mistake. Given the under-and unemployment of people with disabilities, these are people who have a lot of time to sit around and think. And talk to others. Making a good impression here could make a difference.

Not that I’m opinionated or anything. 

The debate was moderated by Helen Henderson, freelance journalist and writer on disability issues. 


There were ASL interpreters, deaf intervenors, augmentative communication workers, live captioning, and attendants available for those who needed them. Which made me wonder why at least some of those aren’t available for every debate or City event. Kind of interesting, given that the candidates were there to talk about eliminating barriers for people with disabilities.

There was quite a throng. The Toronto Star estimated 200 attendees in a fairly small auditorium. I overheard one member of the audience wonder why disability events were always held at relatively small venues. Good question, especially considering that wheelchairs take up a lot of room.

Each candidate was given time for an introductory statement and then Henderson asked them questions on four specific areas, after which the audience could ask questions. The candidates had two minutes for each question. Henderson wonderfully instructed them to be specific about their plans, rather than just stating they would refer questions to the City’s Disability Issues Committee, as had apparently happened in the past.

In the opening statement, Tory describe progress as “halting” and committed to annual targets in the next term. 

Chow said it was important that the mayor wouldn’t leave anyone behind and emphasized how much could be learned from people with different capacities. 

Next came the four questions from Henderson:

Affordable housing and accessibility
Chow wanted 20% of newly developed condo towers to be affordable, saying this would create 15,000 affordable housing units in the city. Apparently, this is something done in her old riding of Trinity-Spadina. Great idea. She also said that there should be clear targets for rates of accessible housing and that she would invest in the Toronto Community Housing Corporation (TCHC) to meet the needs of people with disabilities.

Tory stated that there needed to be more effective advocacy to provincial and federal levels of government and he wanted to focus on two areas. One, to repair existing public housing and including targeted percentage of accessible units in those repairs. Two, new affordable housing on public land owned by TCHC and the Parking Authority. His idea was to move these parking lots underground and build affordable housing on the land. He also specifically focused on housing for people with mental illness.

It was interesting that both candidates didn't seem aware of the already-exisiting rates for accessible units (10% now, going up to 15% in January, 2015)

This question specifically focused on employment of people with disabilities in the City and with City contractors.

Tory wanted all phases of City employment to meet AODA standards, to set targets for employment, and to engage with private sector prganizations known for excellence in employment of and services for people with disabilities (e.g., TD Bank) for examples of best practices.

Chow felt that any endeavor that use City funds (e.g., contractors) should be mandated to hire people who live in the city, including people with disabilities, First Nations, and youth.

This question had specific focus on the changes in the TTC five-year plan, which previously included a commitment to create accessible subway stations as per the AODA. Magically, these targets were recently reduced and delayed.

Chow emphasized that the deadline had to be met and the City couldn’t break the law. She also felt that this delay was due to the plans for subway in Scarborough and took the opportunity to mention her vision for a Scarborough LRT, which would cost less and be finished sooner. She felt that the money saved by this could be used to bring the TTC up to accessibility standards.

Tory states it’s important to move the busiest subway stations up on the priority list to remove barriers to travel for people with disabilities and seniors. He also took an irritated swipe at Chow, stating that she had spent the subway savings three times over in there is debate over the city. I don’t know if that’s true, but it was nice to see one of the candidates break out of the smooth performance.

Preventing discrimination and prejudice.
That candidates were asked if they would support the development and implementation of an anti-ableism policy akin to the City’s anti-racism policy. Needless to say, neither of the candidates were stupid enough not to commit to this.

Tory mused about laws having time frames that were too long, leading to nothing being done for years and ending in a rush to finishing by the deadline. He committed to consulting with those who had experience with prejudice and discrimination and wanted better information for the public about barriers to people with disabilities.

Chow felt that the Disability Issues Committee should be involved in consulting with the community and that there should be an annual evaluation of how the City was doing. This would lead to an accountability measure and action plan

There were many questions for the candidates. Clearly, the disability community is an engaged and opinionated one. It’s a pity that this community is mostly forgotten when it’s not an election year.

Walking out of the event, I had one clear thought: that now I know why Olivia Chow is losing. From everything I’ve heard about her, she excels in the day-to-day work of being a politician. She is innovative and collaborative and has just the healing touch City Hall needs after the last four tumultuous years. But she sucks at selling herself. Within a very short time, I knew exactly what John Tory stood for. In fact, I tweeted a few things during the debate and could easily sum up the three main points of his platform (consultation with the community, set targets, involve private sector). It took me a long time to sum up Olivia Chow’s platform., but I eventually settled for “inclusive, City contractors must be representative of the community and ‘get it done’” (her apparent motto).

Another thing that impressed me about Tory was his repeated commitments to setting targets starting in his first year, should he become mayor. He was also very opinionated about the actions of the Harris government’s closing of large mental health institutions in the 1990s without following it up with housing for those who have a psychiatric disability, calling it “a scandal of which we should all be ashamed.”

This is not to say that Chow appeared any less committed. She had a very matter-of-fact approach to the issues of lack of accessibility, returning more than once to the point that eliminating barriers is the laws, so let’s just do it (would that more politicians did that). She commented a few times on things that she was already doing to remove barriers (e.g., her business card is also in braille). She gave me the impression of being someone who has already been doing this for a while.

And maybe that’s the crux of why I walked away feeling like there was something missing from Olivia Chow’s presentation. She seems to run on her record, which by all estimations is an impressive one. The problem is that she is not running in her old riding, she is running in the riding of Toronto. Most of the citizens in Toronto don’t know her record. Tory understands that he needs to present himself in a clear, easy-to-summarize way and as a veteran politician and broadcaster, he knows how.

Although I’m rooting for Olivia Chow, I wouldn’t be surprised if John Tory becomes our next mayor. I do wish that Chow would give him more of a run for his money, though. Maybe she should hire Kathleen Wynne’s campaign manager. That could even help her win.

Friday, September 19, 2014

New Patient-Driven Arthritis Charter in Canada

To mark Arthritis Awareness Month, the Canadian Arthritis Patient Alliance (CAPA) has released the Arthritis Charter, created by people who live with arthritis for people who live with arthritis. What is the Charter? Dawn Richards, Vice-Chair of CAPA, graciously agreed to answer some of my questions

What is the Canadian Arthritis Patient Alliance and what does it do?
CAPA, as we call ourselves, is a not-for-profit, patient-driven organization that strives to represent Canadians living with arthritis. It’s been around since 2001. We advocate for all things arthritis, to educate and raise awareness, and for access to treatments (drugs and otherwise), often through partnerships. For example, we have recently submitted patient input to the Common Drug Review, which is part of getting a drug approved for provincial formularies. We represent the patient perspective about why it’s important to have new options to treat arthritis, and that even though some of these treatments are very expensive, in the long run, allowing people access to these medications is a good thing. Having a person who is able to have a job, contribute to their family, take part in social activities, etc., costs society and our healthcare system far less overall than what the actual pharmaceutical treatment costs.

What is the Arthritis Charter?
The Charter is a bill of rights and responsibilities that helps people with arthritis understand the kind of care they should expect to receive from their healthcare providers, as well as remind them that they are active partners in their care. I see this as reminding us patients of the important role we play in our care.

How and why was the Charter developed?
A Canadian Arthritis Patient Bill of Rights was drafted in 2001, led by the Arthritis Society, and with input from many arthritis stakeholders. Since 2001 so much has changed! Biologics have changed the landscape of care, inflammatory arthritis is being aggressively treated before joint damage, our population has aged and the healthcare system is close to maxed out.  As well, our society has decreased its attention span - we’re bombarded with messages from different media. Maybe most importantly, we’ve seen a ‘new’ kind of patient emerge - one who’s no longer so patient. We’re much more educated about our illness, and eager to be part of our care.

We saw all of these things as an opportunity to update the Bill of Rights, now called the Charter, and to remind people that they need to play an active role in managing their disease. We’ve created long and short versions of the Charter – one that gets to the point for those of us with really short attention spans (!) and a longer one with more detail.

It’s also an opportunity to remind people that even though we often don’t have control of arthritis, there are some things we can do to feel a bit of control over our lives with it. That may sound like an oversimplification, but I know that I have zero control over my disease, except taking my medication how it’s prescribed, asking my healthcare team questions, and being smart about how I approach my life with arthritis (e.g., when I need a nap, I take it, and when I travel, I figure out how my meds are getting there with me). That’s what I mean about control.

What are the important things CAPA learned through developing the Charter?
The Canadian arthritis stakeholder landscape has a lot of players – patient organizations, a charity that represents people with arthritis, physician and healthcare provider organizations, and an umbrella group, and yes, pharma is a part of that group, too. It was important to get buy-in from all of these organizations. We were also able to leverage these organizations’ outreach capabilities, and even people like you who generously tweeted about our survey to gain feedback and input about our Charter’s first draft. 

There is a strong arthritis community in Canada, and we were wonderfully reminded of this each time we asked for help for support of any kind. Without our stakeholders’ support, we would not have been able to achieve the creation of this Charter.

Was there a particular moment that stood out or was meaningful for you personally?
I was project manager on the Charter since we started on it back in January. At times this felt like ‘the project that would never end,’ but I’m just so pleased with what we’ve been able to achieve with really minimal resources. I think it was the day when I was stuffing envelopes, poster tubes, and sticking address labels on things that I felt what we’ve actually achieved. I hope it’s in my rheumatologist’s office, because if it’s not, he will be asked about it! We’ve developed something that is important, useful, and has input and support from the community. It’s still not going to end, either, because we’d like to see the Charter in places like pharmacies and physio/occupational therapy offices. So I see that as phase 2.

Please tell The Seated View readers about the upcoming Arthritis Alliance of Canada conference in Toronto.
The Arthritis Alliance of Canada is the ‘umbrella’ organization for all arthritis organizations in Canada, raising awareness about arthritis and its burden. It’s a pro-active organization that brings groups together to share best practices across the country. It represents a united front for arthritis, especially when it comes to talking to government and helping policy-makers and decision-makers understand the burden of arthritis on Canadians.

The 2nd annual conference is held in Toronto October 30-November 1, 2014 and it’s a free event. This year, it’s held in conjunction with the Gairdner Awards. For non-science people, these awards can be seen as a prelude to Nobel prizes - many Gairdner winners have gone on to receive Nobel prize recognition for their work. This year’s winners were instrumental in developing the first biologics used to treat people with inflammatory arthritis. They’ll speak at the Alliance conference. You can find more information on the conference here (PDF) and you can register on the Arthritis Alliance website. The audience will include researchers, patients, clinicians, pharma, and all stakeholders. Hopefully some of you will join us! 

Thanks for taking the time to tell everyone about the Charter, Dawn. It's a wonderful thing. I'll be at the conference at least one day - looking forward to it!