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Justice Denied

distress_October-15-2013

Recently, the Emmy for best drama series went to Breaking Bad, a story featuring a high school teacher in the US who reverted to criminal activity to pay for his cancer care. When a loved one is struck by cancer in Canada, there’s plenty of worry and heartbreak. However, one thing we aren’t burdened with is concern about how to pay our healthcare bills. If that same person becomes disabled by a mental illness, care by a psychiatrist is covered, but there are many financial obstacles on the path to recovery – like access to psychotherapy provided by a psychologist or other care provider.

In September, the New York Times featured stories of people with mental illness who struggle to pay for their health care – even when they have insurance. One story featured Melissa, age 13, suicidal and cutting herself. Her family’s insurance carrier refused to pay for recommended hospitalization on the grounds that “she had not been getting better in a significant way.” A second featured an executive whose insurer declined coverage for his anxiety disorder as “he was generally functioning well …and should be able to manage his condition on his own.” In a third vignette, a teenager with depression was denied coverage as “there was no expectation of further improvements in the shorter term.”

Who says things like this?

The director of the California Department of Managed Care summed up these obscene examples saying “insurers seem to continue to view mental health as secondary to all other health.” How would these comments sound if Melissa had severe acne that was not responding to usual treatments; if the executive had arthritis but was still able to go to work; if the teenager had relapsed after a course of chemotherapy for leukemia?

It’s time to accelerate our messaging. There must be no room in our society for care “secondary to all other health” for those with mental illness. We will be embarking on a new awareness campaign with the CAMH Foundation in the near future. We need to be heard in a crowded media space, and many of the people we serve have very soft voices.

We intend to be very bold in our message, amplifying the voices of our best storytellers – our patients and their families. During our Strategic Plan consultations our stakeholders unanimously confirmed an expectation that CAMH lead the way in driving social change by offering the promise of a different future for people with mental illness.

It’s only fair.

16 Comments Post a comment
  1. Alicia #

    I have suffered from severe bouts of panic lasting for months/years at a time. I don’t even know where to start when it comes to the ridiculousness of “health care” I’ve received. One Doc advised me to abruptly discontinue a medication or else I would not be able to continue on in my outpatient program. I went into such severe acute withdrawal that I almost died. Found out later that it could have caused serious brain damage. And who is taking responsibility for these blunders?? No one! Because if we (ppl who suffer from mental disorders) complain or report, we run the risk of losing any type of “help” we may have.

    October 15, 2013
  2. dmarion2013 #

    I am so pleased that your messaging will be bold in an effort to create a better and brighter future for people like me who only want to be treated fairly. I had my first one-on-one meeting with my new manager today and it was very demoralizing to say the least. After asking me what she should know about me, I proceeded to state that I have mental health issues and before I could add anything further, she promptly stated “We all have issues. My husband has cancer and so we all have issues.” It was clear from her tone that she was not interested in hearing anymore about the subject and was implying for me to suck it up and deal with it. She was completely unaware of the insensitivity of her comment and had not stopped to think about how these words would impact me and our relationship going forward. In addition, I found out recently that senior management is considering removing mental health related content from my wiki page because it is not considered work related (and they are questioning my mental stability). It is times like these when I question my efforts as far as volunteer work and my role as a mental health advocate/champion. I ask myself if it’s all worth it – why should I put myself out there and have people question my sanity/well-being/competency?

    When I returned home and saw my daughter (who also has lived experience) and read this post, it renewed my resolve to fight on – because if I don’t, who will tell my story? I need to be strong for my daughter and those who cannot speak for themselves. We must stand together, united in our determination to create positive change and ensure justice is served.

    We need your help to ensure mental illness is not considered “secondary to all other health.”

    Thank you for leading the way for a better, brighter future for patients and families like mine.

    October 15, 2013
    • “He that knows little (too) often repeats it” Thomas Fuller (plus a little edit by me.).

      October 17, 2013
  3. Thanks Darlene and Alicia for these powerful comments. Your experiences reveal how common instances of prejudice are – in the workplace and even in the healthcare system. It is disheartening to be subjected to this kind of discrimination but your perseverance and openness are truly inspiring.

    October 17, 2013
    • Darlene Marion #

      Thank you for the encouragement and support Dr. Zahn. I am committed to focusing on the positive and will not give up! Change must come! :)

      October 17, 2013
  4. annick #

    Good, good, good Let’s go

    October 17, 2013
  5. Thanks for bringing this to our attention. Not to steal your thunder but Dr. Torrey’s newly
    published book “American Psychosis” ends with a quote by Frank Wright from Out of Sight, Out of Mind (1947):

    “Throughout history the problem of the mentally ill has been dodged. We have continually avoided mental patients–we have segregated them, ostracized them, turned our backs on them, tried to forget them. We have allowed intolerable conditions to exist for the mentally ill through our ignorance and indifference. We can no longer afford to disregard their needs, to turn a deaf ear to their call for help. We must come face with the facts”.

    And I would add that we have disgracefully ignored the scientific brain research that could free them from the prisons of their chronic brain diseases.

    October 17, 2013
  6. Patricia Jane #

    Your campaign would be much more effective if you were to give more examples from Canada. Psychotherapy isn’t covered by medicare in Canada, but what other examples do we have here? I find your campaign message confusing because you quote examples from the United States where private insurance companies control the health care system, and often refuse people the coverage for treatment recommended by their doctors. Does this happen in Canada? In addition, your quote from the director of the California Department of Managed Care is also about problems with the US health system where private insurers control access to treatment and care instead of doctors. The only comparable situation I can think of in Ontario is that the Ontario Health Insurance Plan (OHIP) does not cover many of the anti-psychotic medications prescribed by doctors and this leaves many people with psychotic illnesses and their families unable to afford these medications — which are very expensive. Do you have other examples in Canada?

    October 17, 2013
    • Hi Patricia – you’re certainly right that there are important differences between Canada and the United States when it comes to medical coverage. In this blog, my goal was to illustrate that even though medical care is covered in Canada, there are still obstacles to recovery from mental illness – unemployment, poverty, and inadequate housing for example – many of which have their roots in prejudice and discrimination.

      October 18, 2013
      • Patricia Jane #

        Thanks Dr. Zahn for your explanation. If your campaign were to give specific examples of systemic obstacles in Canada, it would help people focus their advocacy efforts to make a difference here. For example, someone I know had his psychiatric medications paid for when he was receiving income and drug coverage from the Ontario Disability Support Plan (ODSP). However, when he was finally successful in getting paid employment, his drug coverage through ODSP was cut off. His medications are not on the formulary and,are not covered by the Trillium Drug Plan., so he has to pay for them himself, which greatly depletes his entry-level earnings. The cost is $189, a package, which the psychiatric nurse told me was “cheap” because it’s an older anti-psychotic and the newer atypicals are much more expensive. My questions: 1) Why do psychiatrists prescribe medications they know their clients cannot afford? is this just thoughtlessness or a form of discrimination? 2) Couldn’t we make a difference if we all (psychiatrists, clients, families, friends) joined our voices in advocating for universal coverage of prescribed psychiatric medications?
        (This is the kind of specific information that I think might galvanize some effective action.)

        October 18, 2013
  7. The tragedy is that it was easier to get appropriate care and treatment in a hospital setting 40 years ago than it is today. Apparently the stigma of mental illness is so pervasive that even some psychiatrists are reluctant to provide a diagnosis of schizophrenia or bipolar disorder unless an individual has been suffering from symptoms of delusions and/or hallucinations for six months or more. That’s nuts! How do you treat effectively without a diagnosis. Sure, it isn’t an exact science but neither is the diagnosis of many other life threatening diseases, especially ovarian and pancreatic cancers. The reality is that my husband would have been dead long ago if he didn’t receive immediate emergency care and a hospital bed when he needed it, both in the US and Canada. Instead, we are celebrating our 40th wedding anniversary with our two wonderful children and five adorable grandchildren soon. Sure there have been setbacks along the way and challenges getting the right mix and the right meds, especially in the early days because there were fewer choices. We’ll be popping the cork with a bottle of French Champagne on December 1st and celebrating our good fortune to have caring health professionals who have made this possible.

    October 19, 2013
    • Patricia Forsdyke. #

      I agree with your comments Lembi . Timely medical intervention for a serious mental illness is becoming a thing of the past for a lot of afflicted people . Money is now spent on some pretty flimsy propaganda campaigns. Though stigma may be a problem, it hardly disappears when there are so many exhibiting acute psychotic symptoms on our sidewalks. The mental illness mess does not have to continue, but policy and priorities must be changed in order to reverse the nonsense. A new book called American psychosis- How the Federal Government destroyed the mental illness treatment system. We are well on the way to copying the mess present south of the border. Compassion through understanding ( more science based treatment )would do a lot to rebalance a very flawed system. Patricia Forsdyke.

      October 23, 2013
  8. Scarecrow #

    Hi Dr, my concern here is a few things. I am currently on social assistance and therefore on a sliding scale but even with that sliding scale I could not afford any private help for my issues as I’m recovering from a TBI that occurred July 22, 2011 and has left me with many issues still; slurred speech, tick, anxiety, headaches, migraines, equilibrium and balance problems, memory issues, anger and temper, focus and attention problems, fear, PTSD, agoraphobia, shakes, pain, addiction, poor judgement, highs and lows, depression and all of this has led to the complete ruin of my life. I went from being a highly paid executive making over $120K per year to jail and now social assistance there is NO help unless you are prepared to go on a wait list with CAMH that is currently 10-12 weeks long while CAMH is on a huge advertising drive raising awareness that there is a mental illness problem only to have those people get their hopes up that they’re going to get help and then be put on a wait list for 10-12 weeks. I can’t even afford to go private as even with their sliding scale they would expect some money but with my current social assistance of $625 per month I couldn’t pay a dime, I’m already in a deficit each month, I used to make over $115K a year, now I can’t work and WSIB doesn’t believe in brain injuries, our whole system is so flawed.

    November 25, 2013
    • Thank you for your comment. I hear your frustration about your symptoms as well as encountering a wait list at CAMH.
      Wait times vary from program to program and are based on capacity. We are working hard to improve how people access care at CAMH by simplifying the intake process and establishing one main entry point for all services and programs. We are determined to do better. Please keep in touch with the CAMH program you contacted, or reach out to a CAMH Information Officer at 416 535-8501 ext. 6111 or info@camh.ca to see if there are any other sources of help we can suggest in the meantime.

      November 27, 2013
  9. Patricia Jane #

    “Scarecrow” raises a really important issue. With all the emphasis now on raising awareness, reducing stigma and encouraging people to ask for help early, we are obviously hoping for an increased volume of people asking for help. But early access to treatment and care has been a barrier for people with mental illnesses for decades. So we need a two-pronged effort to raise awareness AND to increase capacity to deliver appropriate help when more people come asking. We also need to ensure there is a continuum of care when the person is discharged from hospital and/or finishes their out-patient program because mental illnesses such as schizophrenia, bipolar disorder, major depression, etc. are not over when the hospital stay or program is over, and lack of continuing support involving the family and community services has been a serious barrier to recovery for decades.

    November 27, 2013
  10. MM #

    I just found this post today. Thank you for writing it and thank you to CAMH for all your hard work thus far. I have suffered for a number of years now and CAMH programs, both in patient and out are helping. So thank you. MM

    January 2, 2014

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