February 01, 2006

Chronology

Jump to Today

Fall 2003Developed Small Intestine Obstruction.
Winter 2003-04Met with Surgeon.
Pacemaker Eroded through skin.
Spring '04Surgery to remove adhesions and Renovate/Relocate Pacemaker.
May-
Oct 04
Aggressive Antibiotic treatments do not resolve infections at Pacemaker Site/Leads.

Debridements Performed; Level of infection monitored.

Health continued to deteriorate. Continued to lose weight. Became malnourished.

October 2004Pacemaker Removed. Advised that I could have one reinserted in the future. Parenteral Nutrition (TPN) started.
January 2005GI got optimistic. Developing business plan to present to Admin to secure funding to support GES Therapy for patients with severe gastroparesis.
April 2005Advised to contact MOH to have Gastric Pacing Devices listed as an insured service.
June 2005Letters went out! Let the money start rolling in!
July 2005Received letter from MOH Hospitals Division denying funding for Gastric Pacemakers.
Contacted the manufacturer of the device for assistance/direction.
August 2005Letter sent to the hospital (June) was acknowledged. I was advised that it's a complicated situation and they would be meeting to discuss Gastric Pacemakers for patients with severe gastroparesis.
September 2005Advised that the hospital would review the potential to allocate funding to Gastric Pacemakers once the device is assessed approved and by OHTAC.
Advised that the application is in to OHTAC.
October 2005Letter sent to hospital Admin (June) acknowledged. Gist: Understand that they are undergoing organizational changes, please be patient.
January 2006The application went to OHTAC. The hospital's position regarding funding hasn't changed. There is also an application being reviewed in Alberta.

Funding approval in Alberta may help influence decision in Ontario.

If Ontario approves it, then it's back to the hospital to allocate some funding.

February 2006Well, the application is waiting for a signature and then it will go to OHTAC.
March 2006Really, the application went to OHTAC. I mean it. No report issued from OHTAC yet.
Alberta's Heritage Foundation is reviewing GES Therapy.
April 2006Preliminary review done. OHTAC is assessing Gastric Electric Stimulation. Go to OHTAC 's site.

May 2006May passes.
June 2006Letter sent to MAS at OHTAC asking when I might expect to hear something. Anything.
July 2006Received reply from MAS at OHTAC advising that the findings will be made available on the website when their review is completed. I should check their website in September.
August 2006Waiting for September.
September 2006Heard it will probably be sometime in October that OHTAC has completed its review.
October 2006Toronto Star writer Janice Mawhinney covers the story. Download copy (.pdf) here. Click on orange download button in new window.
OHTAC posts its review and states: At this time, the quality of evidence is insufficient to make a recommendation in favour of the use of gastric electrical stimulation (GES) for people with severe, treatment-resistant gastroparesis.
December 2006No further review at OHTAC. No money in the hospital's global budget. The optimist says: the year closed with progress, just not positive results.
January 2007Office of Ontario's Ombudsman officially closes its investigation. We've been advised to seek treatment out of country, at our expense.

For statistical tracking, it is suggested the doc file an application to have the costs of surgery reimbursed through OHIP.

It is considered a futile exercise since the application and review process is heavily stacked against the patient. GES does not meet the current criteria for serious evaluation.

That's nothing against the therapy; it's a reflection of the antiquated and complex rules.

April 2007I arrange to see a Specialist at The Cleveland Clinic.

After some clinical investigations, Dr. Chand, at The Cleveland Clinic, agrees I am a candidate for Gastric Pacing.

May 2007Surgery date set. (early June)
June 2007Surgery completed. Gastric Stimulator re-inserted without complication.
Light up the grill!

Top

2 comments:

Biddie said...

I had no idea. None. I can't believe that the health care system is like this in Ontario. I mean I BELIEVE it, but still...It's crazy. Please keep me up to date. PLease. :)

Christine said...

It is unfortunate that patients are put in the position to advocate so strongly for treatment. I am lucky to have a very strong support network behind me.