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Why Can’t We Access Care?

A call to action for Canadians!

F.E.A.S.T. Board of Director member and Canadian Representative for the F.E.A.S.T. Global Task Force shared a petition with us in July.

A young woman, dying, due to no accessible treatment in Ontario Canada faced a years long waitlist! Lisa Burns, also the parent of a young woman with an eating disorder has been a vocal presence in this arena for several years. Lisa’s daughter was deemed, ‘too young’, ‘too old’, ‘too sick’ and ‘not sick enough’ by every program they tried to access while living in Ontario.

Lisa says, “They told us our daughter could die from this. What they didn’t tell us was how to save her life. We looked to the professionals for life-saving treatment only to be told she didn’t meet the criteria for any of the available programs. When we implored the professionals with questions about how to help our daughter, the response was, ‘she’s your child, you know how to feed her’ and so we tried. We tried with every fiber of our being, only to discover we did NOT know how to feed this child. It wasn’t until we found F.E.A.S.T. and subsequently found other carers/parents that we began to understand exactly what we were up against and how we could save our daughter.”

Lisa first met Dr. Anita Federici in June of 2017 at the WaterStone Foundation’s annual Garden Party. Lisa and Dr. Federici spent time discussing the shortfalls of available treatment and lack of adequately trained professional.

Lisa asked, ‘what other life-threatening illnesses are caregivers expected to remedy in their own home without the help of medical professionals?’ She’d bet money the answer is NONE!

On July 20, 2019, Dr. Anita Federici & Associates posted to Facebook; Dear Canada, I am watching my patient die. Dr. Federici wrote, “Week by week, I watch her body deteriorate, shut down, collapse into itself. I watch as her thoughts become diffuse, no doubt due to atrophy in her prefrontal cortex.” To read the full story please go to Dr. Fedirici’s business page. Dr. Federici began a Change.org petition for Canadians to sign, highlighting the gaps in care for her patient(s), severely ill with an eating disorder. As a community, we began watching with eye’s wide open, the progress to the petition and Dr. Federici’s patient. On August 1, 2019, the community celebrated when we saw this post “She Got Into Treatment!” until we soberly understood that while this young woman would now have the chance to begin to receive life-saving care, millions, yes millions, more are still waiting. Here is what the public and professionals are saying on Dr. Anita Federici & Associates Facebook Page,

  • “We are nowhere near done. Please stay with us. Share our petition. Sign our petition. Help us connect with the people who can move us forward. Millions of Canadians are suffering without access to care. We will stay loud for them.”
  • “Please know that, while my patient was accepted into a program, she was only able to attend because her parent’s insurance plan was willing to cover it. This is not the norm. Most patients DO NOT have insurance coverage for intensive eating disorder treatment or treatment for suicide and self-injury. The current wait time for an OHIP covered bed at the facility I am referring to is FOUR YEARS.”
  • “What are we supposed to do? What will become of him? Do we wait until he collapses? When I hear of the multi-tiered recovery programs in the US, I’m so jealous. He needs so much help, but there is nothing. I truly feel failed by our medical system. There are no choices for him. His entire life experiences will be compromised. My heart breaks every day. I’m so tired of crying.”
  • “I’m glad your patient got into treatment. Mine died on the waiting list.”
  • “Until Ontario can create a comprehensive system for all levels of care for patients with all types of eating disorders, including comorbid, access to the states must be the first choice if community/outpatient care is not enough. These are the lives of our future generation. Every person I met with an eating disorder has been a high achieving, beautiful sensitive soul fighting a demon they did not ask for. A demon that takes over the mind and body of its captive. A demon that is allowed to fester because of the lack of services in Ontario.”
  • “How does a single Mom on an average income pay over $40,000 USD A MONTH to save her child’s life? And knowing that there is no follow up care for her to come home to?”
  • “Really, there is nothing but a bunch of parents fighting to keep their children alive…at the expense of their own lives.”

We applaud Dr. Anita Federici, her bravery in so openly advocating for her client and for individuals everywhere. This is what it will take to have this illness receive the attention it deserves. Professionals, parents, affected individuals all coming together, demanding more and better treatment, demanding more health professionals receive current and adequate education, demanding treatment costs be covered by both a provincial health plan and extended health insurance benefits.

We also need you to know, the treatment wasteland isn’t only in Canada!

While the USA has more and better options, they also face a host of debilitating roadblocks within this community. There are virtually zero treatment options in so many countries that it can feel truly an insurmountable issue – and yet we persist! We must!

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7 Comments

  1. Alexis Burger

    As a person who considers myself recovered from my eating disorder, only because I had the privilege of attending university in the US and receiving a comprehensive residential-outpatient treatment process, and now having worked in the field of eating disorder treatment, I continue to be appalled by the state of the ED treatment system in Ontario, and Canada.

    I received treatment in Ontario, but didn’t have access to the appropriate level of care because my BMI was just above the cut off, and I was kicked out of the program for my behaviours being too severe.

    I just moved back to Ontario, and the time for change is here. The fact that people are literally dying on 4 year wait lists should. NOT. be. happening. These illnesses are treatable, and the sufferers are worth treating. Something’s gotta give.

    • Kym Piekunka

      Alexis, Thank you for sharing your experience! Others are outraged as well and many are signing the change.org petition. Because of stories like yours, an enormous light has been shone on the incredible inadequacies of treatment causing far too much suffering and death.

  2. Laurie-Ann Pozzebon

    I fight everyday for my daughters life. She is my heart and soul. Nothing has brought me to my knees like this. I will never be the same.

  3. Lisa Burns

    I understand exactly what you mean Laurie-Ann!

    Our world has become a new normal that no one should have to experience!

    There is great carer peer support available on Facebook, search ATDT-FB and join us! No carer should face this alone!

    • Kym Piekunka

      Thank you for sharing MPH! Yes, as this piece came out, more and more of our community are sharing the challenges and lack of treatment! We need to keep advocating and educating.

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