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Thursday, December 29, 2011

Health Policy paper provides review of changes in pharmaceuticals policy

In 2009, the Health Council of Canada released a report on the National Pharmaceuticals Strategy, which commented on the patchwork of drug coverage policies across Canada.

A recent paper in Health Policy by Jamie Daw and Steve Morgan reviews the changes in pharmaceuticals policies over a decade (2000-2010).  The paper gives a good overview of the trends and changes in policy with regard to drug coverage in Canada, and presents a follow-up to our own findings in 2009. 

Although many provinces are moving toward income-based catastrophic[1] drug coverage, there continue to be differences in the types and amounts of drugs covered, depending on where in Canada you live.

Federal leadership is needed to protect all Canadians from the high costs of drugs. 

Shilpi Majumder, Policy Lead, Health Council of Canada

[1] Catastrophic refers to the impact of the cost of drugs on one’s finances.

Key Words: Catastrophic drug coverage, Health Policy, National Pharmaceuticals Strategy

Tuesday, December 27, 2011

Health Innovation Challenge deadline fast approaching

In September, we challenged students to identify innovative policies or practices in Canadian health care, and let us know why the innovations are working and how they could benefit the whole country.

The third annual Health Innovation Challenge requires students to prepare a written submission of up to 2,500 words for the chance to win $1,000 and a paid internship at the Health Council of Canada office in Toronto. Several professors incorporated the Challenge into their curriculum, and as a result we’ve received many high-quality entries already.

The deadline is January 16, 2012 – so students get your entries in, professors remind your students to submit, and let’s all look forward to the shortlist announcement in February!

Key Words: Health Innovation Challenge, Student Contest

Thursday, December 22, 2011

Not enough specialists, not enough time

Frank Austin is a stroke survivor who is active in the Kitchener-Waterloo area with his own stroke website and works as a peer counsellor for other stroke victims. His big frustration with the health care system is the lack of specialists with enough time to provide adequate service. He suffers from aphasia, but cannot access sufficient speech therapy.

Affordability: Since a stroke is a sudden illness, the loss of one income in a home with a small child is very significant.   In my situation, I was about to start a new job on the Monday after my stroke, so I did not have any long term/short term disability coverage through an employer. I had to wait for therapy and was not able to afford private speech therapy while waiting for speech therapy at the hospital.

Timeliness of Care: I was in the hospital for a week after my stroke.  I was discharged from the hospital with a prescription for cholesterol medication and was told to make an appointment with my family doctor.  The neurologist in the hospital was an on-call doctor and he said he was not going to be my neurologist.   It would have been a lot easier and far less stressful if we had been given a referral to a neurologist after staying in the hospital for a week, or at least an appointment with the stroke clinic upon leaving the hospital.  While my doctor kept monitoring my blood pressure and ordering blood tests, my wife worked to get a referral to a neurologist ASAP.  It was not until I had finally started my speech therapy at the hospital that I found the name of a neurologist for my wife to call at the stroke clinic.    Once I was at home, I was left alone with knowledge of very few resources.  My wife contacted one organization that we were referred to, and they did not have my file or information.  My wife had a very difficult time trying to find assistance or answers to my many questions, as our life was suddenly turned upside down.  She contacted several private speech therapists who were very helpful at explaining what happened to my speech etc.,  but  charged  more than we could afford.   One therapist told her to call the organization back and tell them that “your husband needs and is entitled to speech therapy now.” She said “Don’t take no for an answer. The longer he goes without speech therapy the worse it can be.” 
Coordination of Care – When my wife called the stroke clinic, they had been in contact with my family doctor’s office. However, the receptionist at the stroke clinic mentioned they had to request copies of the test results from the hospital several times and she was getting frustrated, almost to the point of giving up since they took so long.  The neurologist was informed, he did have the test results once we finally had an appointment with him, i.e., approximately six months after my stroke.  

Patient Engagement:  The neurologist was exceptional. He completed a full examination, he asked a lot of questions regarding what happened the night the stroke occurred and my previous health history.  He took as much time as we needed to ask questions, and since I have aphasia, he was very patient with me.  He took time to explain the results of all the tests.  He also reviewed all the medications I was taking and increased the dose of the cholesterol pill.   He was concerned since I am young and he wanted to prevent another stroke if at all possible.   He also ordered another test right away.  

Self Management – I attended “Living with a Stroke” through the Grand River Hospital. This was very helpful and allowed me to meet other survivors.   I also attended “Stroke Recovery Canada” meetings to meet other survivors and as part of my post-stroke therapy. 
I was discharged from speech therapy after approximately nine months, but was in no way in a place to be finished.   I was sent home with no other resources, other than private speech therapy and, unfortunately, we were not able to afford it.   That was why I was determined to find help for myself and others sitting at home without the continued therapy we require to be self-sufficient.   That was why I created a website – – and worked hard to start an aphasia conversation therapy group for survivors – Expressive Café.

Key Words: Home and Community Care, Patient Engagement


Tuesday, December 20, 2011

Pumping up the volume on patient voices

Zal Press is Executive Director of Patient Commando Productions, an internet initiative dedicated to promoting the patient voice as a guide to practice change. has more than 1400 patient experience stories that will be loaded onto the site, considered the world’s largest collection.

I’m taking a biologic for Crohn’s disease. And I’m a lucky guy – my $30,000 annual tab is picked up by my wife’s benefit plan. But in five years, when I hit 65, we’ll be off her plan and I’ll be transferred to the Ontario Drug Benefit Plan.

I’m already fretting over what that future will bring. Will the continued financial strain on the health system foreclose on my access to this medication, and instead force a body-altering operation because it will cost the system less in the short run?

And will this decision be made by a cost-benefit analyst rather than by a collaborative agreement between me and my doctors?

US insurance companies have required multiple step therapies before approving many biologics, resulting in multi-year delays. In Ontario, the Exceptional Access Program has fallen behind in processing applications. The population percentage with chronic illness is growing and treatment of choice for managing many conditions is increasingly these pricey biologics.

After living with a chronic illness for over 30 years, I understand it’s important for patients to be active participants in our health care. But I also know that outside of the examination room, the patient’s voice is still faint and needs amplification as the discourse necessary over preserving access to treatment starts to gain momentum.

Our southern neighbour offers insights into the problem of access. Is the US experience just the tip of the iceberg of a dangerous Canadian trend? We can learn from that as we debate the broader issue of sustainability. In the meantime, I’ll take comfort from the security of my marriage - and my wife’s plan.

Key Words: Patient Engagement, Ontario Drug Benefit Plan

Friday, December 16, 2011

CMA’s Globe and Mail special section on health care

 A few weeks ago the Canadian Medical Association published a special information section in the Globe and Mail featuring articles on a range of health care issues, from various Canadian health groups. The section focuses on the upcoming 2014 accord negotiations, and which issues need to be at the centre of discussions.

You can find all the articles at:, but here are a few we found interesting, with links to what we ourselves have said about the issues:  

This article is an overview of topics covered in the others, focusing on four areas of transformation:
·         Enhance the health care experience
·         Improve population health
·         Improve value for money
·         Accountability (see John G. Abbott, Health Council CEO, discuss accountability in this video clip at 1:51:24.)

An apple a day may keep the doctor away, but what if you can’t afford to buy apples or other fresh fruits and vegetables? What if your home is overcrowded or has mould? What if you don’t even have a home?
This article discusses how social inequities affect health and wellness, with comments from Scott Haldane, President, YMCA Canada.


What is patient-centered care and why is it important? This article explores the challenges in maintaining a focus on the patient and discusses suggested solutions.

This article highlights the importance of EMR adoption across the country, and what it can mean for patients and the health system as a whole. We discussed the fulfillment of governments’ commitments to electronic medical records in our Progress Report 2011.

Key Words: Electronic health records, value for money, health care transformation, Health Accord

My experience with the mental health field

Paolo Scotti is currently the Peer Support Worker for the West Metro ACT Team at Canadian Mental Health Association Toronto and happily thriving in his transformation from his "illness phase" into his "recovery journey”.

I had always considered myself as being very healthy. Maybe I was so confident of my mental and physical strength that I arrogantly dismissed the fragility of life. So, at the age of 31, when I was admitted into a general hospital’s psychiatric ward with a psychotic break, it was totally devastating and completely debilitating. I had no idea at the time, but it was the beginning of my chronic schizophrenia. I am not sure that the physical symptoms of schizophrenia were my worst enemy.

Possibly more damaging was the human reaction and judgment from others, including some mental health professionals when I was first hospitalized in 1992. For example, my hospital psychiatrist was extremely unsupportive. He would get annoyed and inpatient with me, treating me with disrespect rather than a whole human being. I don’t have problems with self-esteem or self-worth. I was just a human being in a vulnerable situation, turning to “professionals” for support and guidance when I didn’t know what was happening to me. I was hoping for compassion, empathy and especially understanding and an explanation. Instead, I was made to feel like it was my fault for what was happening.

For example, when I couldn’t express myself because of thought disorder (a symptom of schizophrenia which no-one told me about even after being in hospital for over a year), I was told I was always repeating myself and that it was “so boring”.  Or, when I would talk about the strength of my religious faith, I was treated with complete contempt, ripped to pieces and treated as a fool and ridiculed. I don’t expect anyone to share my faith, but why not respect my worldview, especially since it may have made the difference between life and death? Just because someone is very ill does not mean that they are any less human and void of feelings.

When I was out of hospital, my community worker was also unbelievably disrespectful. She totally dismissed my goals, desires and my expressed employment wishes. Instead, she literally imposed her ideology on me (based on social goals). She did not listen to me and had no respect for my support systems. She criticized the fact that I lived with my mother, a source of huge support for me. That seemed an issue for her.

Happily, things appear to have changed dramatically in the past 20 years. Now, I work as a Peer Support Worker at a community mental health organization. Every day, I see amazing work done by many outstanding individuals. The mental health system still needs to transform, but now it’s focusing more on a recovery-oriented, strength-based, patient-centered, wellness-focused approach and treating people more holistically.

But looking back, with honesty and without dramatizing, if it were not for proper treatment, for my mom (who was an incredible source of hope and non-judgmental love) and my faith, I might not be here today. Back then, I think I would have seriously considered committing suicide. In my opinion, everyone else, including some mental health professionals in the hospital and in the community, failed terribly. Maybe I was just unlucky. Now, my only professional mental health support is an amazing psychiatrist. All of my family are very supportive now that they understand. However, it is important to say that some professionals, supposedly trained to help you when you’re most vulnerable, may actually harm you more and push you over the edge if you are not aware.

Key Words: Menral Health, Patient Engagement

Thursday, December 15, 2011

Why didn't they listen?

Nicoleta Woinarosky is a volunteer in the Ottawa area.

I’ve had several experiences where I had excruciating pain which limited my physical activity and life quality. I asked doctors for tests and was refused, but then they prescribed antidepressants (which I strongly refused), only to find later - after suffering for years -  that tests would have allowed diagnosis and physical, not mental, treatment. The Arthritis Society's physiotherapist helps me.

I struggle with doctors for my right to be actively involved in managing my health and not be unnecessarily drugged. From 2003-2005, I asked my family doctor to x-ray my neck. Instead, she prescribed antidepressants. Finally, after getting x-rays she said, “Your neck x-ray is not good.”
In 2004, a neurologist said, “People who come to see me are quiet. You talk, you’re fine. Here, take these antidepressants.” In 2008, a different neurologist diagnosed serious neck-hands-shoulders problems using MRI/EMG/nerve conductivity. 

In 2008, 2009 and 2011, in pain, I requested tests. My family doctor refused, but prescribed antidepressants. I wrote her a letter asking how she would feel being unable to walk, sit, stand, bend, refused tests, and drugged. Two days later, she suggested a CT Scan which revealed serious low-back problems.

X-rays, CT Scan, MRI, EMG, and nerve conductivity found various bulging disks, spurs, nerve and muscle damage in different areas. How would all those previous prescribed antidepressants mend my discs, spurs, nerves, muscles?

Doctors know I have an MA in Health Science. My thesis was, “The Effects of Exercise on Chronic Pain and Pain Related Mental Health Issues.” I have knowledge on pain anatomy and all pain treatment modalities. Why didn’t they listen? Due to health, I resigned March 2011 and now volunteer using my MA, teaching weekly physical activity in a seniors’ residence and monthly pain self-management at the Arthritis Society.

Wednesday, December 14, 2011

The cost of trial and error

New Westminster, B.C. resident Jason Bosher is crafting a career as a writer/editor. Since 2001, he has been dealing with rheumatoid arthritis, osteoarthritis in his hips, minor carpel tunnel disease, and a chronic spine issue.

I love this country and I am grateful for Canada’s health care system. If I had to find one fault with our system, it would be the medication hierarchy. I have rheumatoid arthritis. I am also considered low income. I spend about $400/month on medications.

After six years, my initial medications were no longer keeping my RA in remission. I had two basic options: if I wished to receive partial coverage from the government, I had to show the next two medications in the hierarchy were ineffective. Then, the drug my specialist believed would be the most effective would partially be covered.
Or, I could go straight to the recommended medication and pay the full price myself, which was quite expensive.

Wait a minute; let’s go back to option A. I would have to ingest medications with all sorts of potential side effects for a prolonged period of time. Then if my RA began to flare up and reduce my quality of life, I could move on to the next medication. If this medication failed I could then receive the recommended medication with some cost savings. The big danger with a disease like RA is that due to its unpredictable nature, once out of remission it may never go back into remission. If I chose to play the health care game, I could potentially become severely disabled for life.

To me the gamble wasn’t worth it. I chose option B. This raises a couple of questions: If I went with option A and became severely disabled, wouldn’t that place a far greater strain on our health care system? If I could no longer work, wouldn’t that be worse than receiving help with medication costs now?
A sound recommendation from a specialist should allow for partial coverage.

Tuesday, December 13, 2011

The cost of chronic illness

Lene Andersen is a writer and photographer living in Toronto. She has had severe rheumatoid arthritis since childhood and uses a power wheelchair. Lene is the author of the award-winning blog, The Seated View.
When we talk about the cost of living with a chronic illness, it usually refers to the impact on quality of life - the ability to participate in your family, community and work.

Living with a chronic illness is also expensive.

I am lucky there's a financial assistance program that covers the very expensive medication which has given me back so much of my life. Because of this I can work part-time, give back to my community and be there for my family.
Even so, other medical conditions pop up, as do side effects from the drug that gave me back my life. More medications are needed, some only covered in generic form and others not at all. Sometimes, the generics don't work as well as the brand name. I have two choices: endanger my health by not taking the meds or pay for the brand name myself. Every month, they cost me $400 I don't have.
Treating a chronic illness isn’t just about drugs. Physiotherapy can help maintain my level of function but costs $80 for one treatment. Without it, I have high pain levels that can reduce life to just getting through the day. With it, I go deeper into debt.
I have used a power wheelchair since I was a teenager. It is my legs, my mobility -  without it, I would be confined to bed. Because I do not receive social assistance, I pay for maintenance and repair myself. This past summer, it cost me $2000.
I am a lucky woman. I have good medical care and medication, treatment and equipment that give me the opportunity to live a wonderful life even with a severe chronic illness and disability. Without them, I risk my health and lose the ability to live my life. With them, I sink forever deeper into debt because I am also caught in a vicious circle of necessary expenses that I cannot afford.

Monday, December 12, 2011

Worrying about my future

Sharon Noseworthy had to leave her career as a Human Resource Counsellor due to retinal disease. Currently, she advocates for support and rehabilitation services for Canadians with vision loss, hoping to stop unnecessary hardships. Sharon has also written a compelling piece, Fear, about dealing with Polypoidal Choroidal Vasculopathy on the MD Support website.

I have an incurable, untreatable chronic illness, a retinal disease. Despite long wait times for appointments, hours spent in the waiting room and too little time with the doctor resulting in no time for questions, I believe my eyes receive excellent care. I did worry about the cost of the expensive drugs used to treat the eye. I was already spending thousands of dollars on tools to assist with daily living. 
To date, no treatment, no drug has helped. I recall the day the retinal specialist said, “We are sorry but there is nothing further we can do for you.” I understand that there is nothing that can be done to treat the eyes, but what about me! 
There was, and is, no offer of rehabilitation, no offer of counselling, no evaluation of my needs and arrangement for required services. I left the clinic feeling helpless and hopeless. I went home not knowing how to deal with living with low vision. With no continuum of care, my health has deteriorated. I became acutely ill.
My family doctor monitors my health, including side effects from vision loss. With, or without reports, she provides excellent care. The retinal disease is still active so specialists continue to monitor my eyes. However, what I truly need are comprehensive vision loss rehab services. These services do not exist. As a result, I am not able to live independently. I worry about my future. Will I, like so many others, have to prematurely enter a retirement or nursing home?

In search of support: the importance of communication in the heath care system

Daniel Stolfi is an actor, writer and producer and currently resides in Toronto, Ontario.  Daniel took his two-year battle with cancer and turned it into the heartwarming and hilarious one person comedy show, "Cancer Can't Dance Like This."  Daniel has shared his story all over Canada and has helped raise over $75,000 for cancer-related charities across the country.  "Cancer Can't Dance Like This" recently won the 2011 Canadian Comedy Award for best one-person show. 

 In March of 2008, I was diagnosed with Acute Non-Hodgkin’s T-Lymphoblastic Lymphoma.   An aggressive tumour was growing rapidly over my heart and if treatment wasn’t started immediately, this grapefruit-sized mass would end my life in a matter of weeks.  I was just 25 years old and had my whole life to live.   
During my two-year chemotherapy protocol, I was challenged to navigate my way through a complex world that was the Canadian health care system.   I struggled to find support from my peers in the young adult stages of life.   I became very vocal about my need for support and was eventually able to convince my doctors to introduce me to another patient around my age who was going through the same thing as me.  After eight months of treatment, I was finally introduced to a 22-year old young adult named Ari.  He was in the midst of completing the exact same protocol as I was, and through this commonality of experiences we provided each other with support to get ourselves through the remaining 60-plus weeks of chemotherapy.   Through patient interaction, engagement and overall communication with my health team, I was able to get what I truly needed to help make my journey a success.   

Unfortunately, this process of finding support took much longer than it should have.  Some patients never get that support because it isn’t made clear to them where they can find it.  Communication between patients and health care providers is a simple solution to creating a more empowering journey for any patient.

Tuesday, December 6, 2011

Time is of the essence (or, don’t put off today what you can’t do tomorrow)

A recent CBC article discusses the meeting of Health Minister Leona Aglukkaq and provincial health ministers on November 24 - 25, and the potential for preliminary discourse on a new health accord for 2014. More than once the article mentions that there is still time for these discussions in advance of the 2004 accord expiry in 2014.  However, given that the article further mentions the need to review the Canadian Health Transfer funding model, fundamental reforms to current health care delivery, and the “crisis-fuelled negotiation…conducted earlier this decade” to devise the 2003 and 2004 health accords, “more than two years” doesn’t seem like nearly enough time.

Added to this are the arguments presented by André Picard in his article on the upcoming meeting of health ministers, wherein he discusses the need for revamped health financing.

These arguments are all valid in the context of a new or renewed health accord for 2014.  But time is of the essence.  Although simple enough to suggest how to reform health care in Canada, it is much more difficult to come up with reforms that are evidence-based and have buy-in from all stakeholders (that is, provinces, territories, the federal government, health care providers and the public). 

The National Healthcare Service (NHS) in England began consultations in 2007 for national reforms that culminated in the NHS Outcomes Framework that was first implemented in 2011.

In Australia, the Council of Australian Governments agreed to a reform agenda in 2007 that included reforms to health care.  The National Healthcare Agreement established in 2008 (revised in 2011) outlines specific goals for healthcare, and requires yearly performance reports on progress towards achieving these goals.

Given these two examples and the timelines for developing health care reform agendas, is two years enough time to fully hash out health care reform in Canada?  Serious discussions need to start now at all levels of government with expert and public consultation in order to develop well-planned strategies for health care reform in 2014.

Susan Brien, Policy Lead, Health Council of Canada

Key Words: Health Accord