My Patient is Dying and We Can't Access Treatment
My Patient is Dying and We Can't Access Treatment
Imagine for a moment that your child was diagnosed with a life-threatening medical condition. You are told the following things about the condition:
- 1 in 10 will die.
- Suicide is the second leading cause of death (after cardiac failure).
- For those who live, life expectancy will be shortened by 20 – 25 years.
- The illness is brain-based with genetic underpinnings.
- The illness will attack and erode every muscle and organ system in your child’s body, including the brain. The doctor tells you to expect damage to the gray and white matter in your child’s brain if proper treatment isn't given quickly.
- Their bones will weaken and they are at risk of developing osteoporosis at a young age.
- Their gastrointestinal system will malfunction.
- They are at high risk of a fatal cardiac event
- Work, school, and relationships will all be significantly impacted.
- Depression, anxiety, trauma, substance use, self-harm, and suicidal behavior are likely to occur.
- There is treatment. Your child will need to attend an intensive hospital-based program for 4 to 8 months. There are different levels of care: day treatment, inpatient treatment. Long term support will be necessary following intensive treatment
Now imagine that you learn the following details about the treatment:
- The wait time for OHIP funded treatment is 6 to 12 months (some patients will die waiting, others will become increasingly more ill).
- Treatment programs are located in large cities. This means driving six or more hours per day if you live in a rural location, or renting an apartment in the city.
- There are experts in the community, but the cost is prohibitive for most people.
- You could go the USA today and receive the treatment that will save your child’s life if you can afford the costs, that typically exceed $45,000.
- You can petition OHIP for out of country coverage, however, many patients and families are turned down.
If I told you the diagnosis was cancer, would you be satisfied with the state of treatment and the access to care?
If I told you the diagnosis was a congenital heart condition, would you expect more from your doctors? from the government?
And if I told you the illness was Anorexia Nervosa would it make a difference?
It seems to makes a BIG difference in Canada.
Eating disorders are characterized by the inability to properly feed oneself. Next to the opioid crisis, eating disorders have the highest mortality rate than any other psychiatric illness. At any one time, more than one million people in Canada suffer with an eating disorder. Often brushed off as a "choice", a poor attempt at dieting, or an expression of vanity, most patients with an eating disorder never get the treatment they need. Except there is no choice here. Eating disorders are like an autoimmune condition where the body does the unthinkable: It turns upon itself….rejecting nourishment, counteracting metabolic indicators, perceiving the body as the enemy, distorting thoughts and perception.
I have spent 20 years researching, treating, and advocating for those suffering with eating disorders. And while we have made strides in some areas, particularly in identifying the neurobiological causes of these deadly diseases, I still wake up most days feeling like it’s groundhog day. My patients (and thousands of others) are dying because they can’t get access to the treatment that would save their lives.
Over the course of my career, I have been shut down, talked over when bringing up these issues, and completely disheartened by the political landscape that, in my opinion, impedes progress. I am tired of the in-fighting, the egos, and the misguided policies.
Together, we can create the change that is needed to save the lives of children and adults with eating disorders. We are asking the Canadian Government to recognize eating disorders in the following ways:
1. Patients, like mine, need treatment now. We need help getting her into a program ASAP. She doesn't have weeks or months to wait. We have contacted ALL of the ED programs in the province and many out of the province. We have been told that the waiting time is at least another two to three months. We need OHIP coverage NOW so my patient can access treatment in the USA immediately.
2. Fund evidence-based eating disorder treatment in the community. Long wait lists mean that people are dying and becoming more ill as they wait. OHIP coverage for proper eating disorder treatment (e.g., 40 sessions for CBT-E, intensive outpatient programs, family-based treatment) by certified providers would provide the following:
- No/short waiting times. There are many reputable ED providers across the country and more is being offered via video technology for under-serviced areas. OHIP coverage means that patients would have access to timely treatment.
- The progression of the disease may be stopped. Those in early stages of the illness or those relapsing could be helped right away which could circumvent the need for inpatient care (which costs the Ontario provincial government an estimated $107.7 million dollars per year).
3. Establish appropriate treatment centres in under-serviced areas. We are asking the government to provide the funding and infrastructure to develop and maintain eating disorder treatment centres across our country (e.g., northern Ontario, East Coast). Funding for the training of doctors (most of whom receive less than 5 hours of ED-specific education), dietitians, and family health teams is necessary.
Please sign the Petition and share it with your friends. Let our elected officials know that you won’t stand for children and adults dying because they don’t have timely access to treatment.