Friday, December 19, 2014

Letter to 60 Minutes, Re: Battle for Mental Health Treatment Segment

Dear 60 Minutes:

Thank you for your look inside a world that is terrifying to far too many sufferers and parents of those with eating disorders – the world of capricious and perplexing insurance coverage and denials. An interesting and productive follow-up piece would be the story of what happens when clinicians and insurers put the best interests of patients and families at the forefront. In the case of eating disorders, this means early diagnosis and prompt, aggressive, appropriate-level-of-care treatment. This protocol can take the mortality rate for anorexia from up to 20% down to 3%. In real terms this means reductions of from an estimated 180,000 for a six month stay in a residential facility and more costs for step down treatment to around 7,000 at the low end for a year of intensive outpatient family based treatment. As a bonus one would think insurers would consider this also costs the insurer far less in the long run. Let alone save countless lives, lost productivity and resources. 

The physical complications of untreated eating disorders develop quickly, are very expensive to treat, and require medical management that cannot be denied—these run the gamut from heart conditions to gastrointestinal problems to bones that fracture easily and often to death. Insurers have an opportunity to lead on changing the abysmal outcome metrics for those with eating disorders by insisting pediatricians, primary care physicians and emergency room doctors are trained to recognize the signs of an eating disorder and refer for treatment immediately. And for insurers to insist on increased specialized eating disorder training for clinicians both pre- and in-service. 

We are a coalition of 500 carers, parents and survivors working on advocacy and support respectively. Please visit our 100% volunteer website at www.iedaction.weebly.com to see our current and past actions; and our Facebook group pages. We would be pleased to assist in any upcoming stories. 
The parents, patients and advocates of International Eating Disorder Action and the parents and other carers of Eating Disorder Parent Support

FB: International Eating Disorder Action, Eating Disorder Parent Support
Twitter: @iedaction

Thursday, December 4, 2014

Letter to Health Canada on Advisory Panel on Healthcare Innovations

We still have 24 hours to add Canadian signers to this letter; please leave a comment here or on our Facebook page if you would like us to add your name (deadline noon EST 12/5/14).

Stakeholder Input on Eating Disorders

Submitted: Eating Disorders are deadly, brain-based illnesses with an unacceptably high mortality rate directly related to the lack of services.  For further insight into this, please read Eating Disorders Among Girls and Women in Canada: Report of the Standing Committee on the Status of Women which was just released.

As parents of someone with an eating disorder, the deficiencies in the Canadian health care system in this arena are painfully apparent. Of great interest it is that because the current system is run so inefficiently, more money is being spent to help people only at a late stage of the disease than would be spent if the system were run in a medically and fiscally responsible manner.

The current system, vis a vis eating disorders diagnosis and treatment is analogous to this scenario: A patient presents to a physician with a mole of irregular color and shape. The physician either doesn’t recognize that this type of mole can be dangerous or does recognize it and recommends the patient see a specialist. If the patient sees a specialist, the specialist says, “We don’t intervene this early—we will put you on a list and call you when there is a spot.” Provided the patient lives until the spot is available, the patient presents again and is told the disease is far too entrenched to treat effectively, and in any event, treatment at this stage is so costly there are very few options.

Suggested Innovation #1
·       Provide for adequate training, and continuing education of, physicians, nurses and other healthcare professionals, in the recognition and medical management of eating disorders. (This need not be a costly endeavor. The international group Academy of Eating Disorders has excellent resources on which to base a curriculum and continuing education program.) Note that the current curriculums, which provide only a few hours of training on the deadliest of all mental illnesses, are clearly insufficient.  All training and materials must reflect that eating disorders can strike any gender or age and occur across cultural, ethnic and socioeconomic lines.

Suggested Innovation #2
·       Increased access to Community-Based Partial Hospitalization Programs (PHP) and Intensive Outpatient Programs (IOP).  It is indisputable that early detection and intervention are key factors in the ability for someone to make a full recovery from eating disorders. Beginning treatment immediately upon early diagnosis also increases the likelihood that expensive inpatient and residential programs will be avoided.

Suggested Innovation #3
·       Pursue evidence-based treatments for PHP, IOP and Residential Options. This will acknowledge that in most situations inclusion of families is a key factor for recovery. Family Based Treatment (FBT) is the top choice for adolescents with anorexia nervosa and Cognitive Behavioral Therapies (CBT) are indicated for bulimia nervosa and adults with anorexia nervosa. Given the persistence of, and resistance to treatment in, eating disorders, all programs should provide education for Carers on how to support recovery outside the medical environment; again this is important both from a medical and cost perspective. The Families Empowered and Supporting Eating Disorder treatment (F.E.A.S.T.)  site contains the latest research and citations on treatment protocols.

Suggest Innovation #4
·       Pursue the use of technology in providing services to those in remote locations and for follow up after more intensive treatment—including platforms similar to Skype and phone applications like Recovery Record.

Suggested Innovation #5
·       As the above innovations will take time to develop, increase funding and streamline processes for sending patients to the United States for treatment if a residential option is the only suitable one (as is the case for many at this point as the system has never properly functioned). While this may seem like a high initial cost, it must be noted that the very expensive physical complications of an untreated eating disorder are costing, and will continue to cost exorbitant amounts of money that far exceed that spent on treatment for an eating disorder.

Response to "Eating Disorders Among Girls and Women in Canada" parliamentary report released by The Standing Committee on the Status of Women

We are still collecting Canadian signatures for this letter to be sent ASAP; please leave a comment here or on our Facebook page if you would like us to add your name.

Health Minister
Honourable Minister Rona Ambrose
House of Commons
Ottawa, Ontario K1A 0A6

December 3, 20014

The members of International Eating Disorder Action, (IEDAction) are writing to you in regards to the recently released report from The Standing Committee on the Status of Women: “Eating Disorders Among Girls and Women in Canada.”

Thank you for undertaking the study and allowing the testimony of 30 witnesses and for recognizing eating disorders are serious mental health illnesses. It’s important to be clear eating disorders affect all genders, cultures, ethnicities, age groups and socioeconomic classes.  Additionally, eating disorders have the highest mortality rate of all mental illness. 

Due to the serious nature and the wide-ranging affects on Canadians, we feel strongly further studies should have be undertaken by the Standing Committee on Health. While we appreciate a dialogue being opened, we are disappointed that very little concrete action has been indicated by the report as recently published and are frustrated by the Committee’s recommendations.

We implore your office to put Eating Disorders on the Agenda for the upcoming Joint Provincial, Federal and Territorial meeting of the Ministry of Health. 

Those with eating disorders, and their families, continue to be negatively impacted by the lack of resources, research and funding for these illnesses, which have a high rate of recovery when diagnosed early and treated using evidence-based, best-practice treatment modalities that include families. It is worth noting that early diagnosis and aggressive treatment save substantial money when compared with the high costs associated with the medical complications of untreated eating disorders.

Three areas of immediate need are a Pan Canadian Strategy for Eating Disorders, a National Data Base and strong research programs; currently, the global Anorexia Nervosa Genetics Initiative (ANGI) cannot be participated in from Canada—though the U.S., U.K. and Australia are all supporting this important study.

We look forward to news of a renewed emphasis on finding solutions via the Joint Provincial, Federal and Territorial meeting of the Ministry of Health and we are happy to support this effort in any way possible.


Tuesday, December 2, 2014

Eating Disorders in Canada: Help Needed!

The news from The Standing Committee on Women report on Eating Disorders Among Women and Girls in Canada is not good. A lot of, yes it's bad and no, we don't really have any plans to fix it. As Globe reporter, Andre Picard says, Eating Disorders are a Scourge in Need of a Strategy.

Health Canada is asking for stakeholder input for their Advisory Panel on Healthcare Innovations and we certainly have ideas on how to save both money and lives by revamping the way eating disorders are treated in the Canadian Health system.

We are currently at work on letters to both organizations mentioned and will promote their content via social media once submitted.

Early diagnosis and prompt, evidence-based treatment saves both money and lives--and this is true around the world whether bills are paid via an insurer or a national health system. Doing the right thing should be easy!