No Access to Health Treatment

Welcome

2006-10-31T12:08:00.114-05:00

chilee blogs updated October 2009

- Jan./09 - From The International Journal Health Finance and Economics

Health Care Expenditure and Outcome Rankings - U.S. v. Canada

New visitors start here, then browse around the sidebar to get the whole story.

Download a copy of the article by Janice Mawhinney (Toronto Star, Oct. 13, 2006)...follow the link and click on the New Link in the New Window.

October 2009 - GES Patient in Miami

Sept. 2009 - Metozolv ODT Approved by FDA
Note: Metoclopramide is on the FDA's Warning List. The drug has serious side effects and may be linked to several patient deaths.

August 2009 - TZP102 Gets FDA Fastrack

June 2009 - Carbon Monoxide Reverses Gastroparesis in the Lab

Results from 4-Year U.S. Study of Gastric Pacing

I Need a New Pacemaker I Need it NOW

2006-10-27T10:12:00.000-04:00

I am a 40 y.o. female. I was diagnosed with idiopathic gastroparesis in 1994. I had a GJ tube inserted and received nutrition and medication via continuous feeds using the Kangaroo-Backpack Enteral Pump. I had tried every medication/treatment available. Tube feeding was my only option. I was 27; my son was 4; my daughter was 3; my husband was (still is) supportive and an inspiration.

We agreed to live the best life we could regardless of the medical situation. And every day I strapped on this backpack, hooked up the tubes, took the kids to daycare, went to work, picked the kids up, played at the park....lived life the best we could.

In 1996 I participated in a study to assess the efficacy of Gastric Electro-Stimulation therapy. It uses an implantable programmable device with leads connected to the stomach to simulate gastric motility. I was the first in Canada to receive this type of therapy. It's a pacemaker for the stomach and it worked!

I got my life back. My children got their mother back. My husband got his wife back. Life was great!

In October 2004, the pacemaker had to be removed because of serious chronic post-surgical infections. Immediately, the symptoms from the gastroparesis returned: continuous nausea, daily episodes of vomiting, unable to keep even the most elemental/simple foods down, weight loss, muscle-wasting...you get the idea. It's terrible.
I now receive all my nutrition via IV (Parenteral Nutrition). It takes 10 hrs to complete the therapy. I infuse medication intravenously each day.

I need a new pacemaker and I need it now!

Gastric Pacing Therapy is not an insured service through my provincial health plan. I was advised last year, by GI to begin a campaign to pressure the provincial health ministry to add gastric pacing to its list of insured services. So I did.

More than 100 letters were sent to the Minister, MPP's, opposition critics and Admin at the Hospital. Over 500 postcards were mailed to the Minister's office. Each explained the need to insure the service so that I may have a significantly improved quality of life.

I spoke with directors and chiefs at the Ministry several times each week. And then,

We were denied by the Ministry. I received a letter that explained to me that Gastric Pacing Therapy is still considered experimental. It is not recognized by the province as medically necessary, nor the most appropriate treatment for gastroparesis.

And yet it is both medically necessary and the most appropriate treatment for intractable gastroparesis like mine.

Action	Hours Used (Original Protocol)	Hours Remaining	Hours Used (New Protocol) Oct/06	New Hours Remaining
		24
TPN Nutrition	10	14	10	14
Additives,Priming,Flushing	.5	13.5	.5	13.5
Medication (3 intervals)	2	11.5	4	9.5**
Priming, Flushing	.5	11	.5	9
Hydration	5	6	5	4
Priming,Flushing	.5	5.5	.5	3.5
School Carpool	1	4.5	2.5*	1.0

Action	Hours Used	Hours Remaining	New Hrs. Remaining
		4.5	1.0
Drive after-school	1.5	3	incl.
Any day Jess plays hockey	3	1.5	- 2
Nursing Visit	1	3.5	0

Cost of Pacemaker for 1 patient		$40,000
Cost of TPN for 1 patient	$800/wk
Weeks On Home PN ( to 10/22/09)	262	209,600
Additional Cost to OHIP to treat with home PN instead of Pacing Therapy (excluding Dr. visits, Clinic follow-up, diagnostics, lab tests, social cost, etc.)		($169,600)

Fall 2003	Developed Small Intestine Obstruction.
Winter 2003-04	Met with Surgeon. Pacemaker Eroded through skin.
Spring '04	Surgery 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 2004	Pacemaker Removed. Advised that I could have one reinserted in the future. Parenteral Nutrition (TPN) started.
January 2005	GI got optimistic. Developing business plan to present to Admin to secure funding to support GES Therapy for patients with severe gastroparesis.
April 2005	Advised to contact MOH to have Gastric Pacing Devices listed as an insured service.
June 2005	Letters went out! Let the money start rolling in!
July 2005	Received letter from MOH Hospitals Division denying funding for Gastric Pacemakers. Contacted the manufacturer of the device for assistance/direction.
August 2005	Letter 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 2005	Advised 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 2005	Letter sent to hospital Admin (June) acknowledged. Gist: Understand that they are undergoing organizational changes, please be patient.
January 2006	The 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 2006	Well, the application is waiting for a signature and then it will go to OHTAC.
March 2006	Really, the application went to OHTAC. I mean it. No report issued from OHTAC yet. Alberta's Heritage Foundation is reviewing GES Therapy.
April 2006	Preliminary review done. OHTAC is assessing Gastric Electric Stimulation. Go to OHTAC 's site.
May 2006	May passes.
June 2006	Letter sent to MAS at OHTAC asking when I might expect to hear something. Anything.
July 2006	Received 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 2006	Waiting for September.
September 2006	Heard it will probably be sometime in October that OHTAC has completed its review.
October 2006	Toronto 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 2006	No 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 2007	Office 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 2007	I 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 2007	Surgery date set. (early June)
June 2007	Surgery completed. Gastric Stimulator re-inserted without complication. Light up the grill!

Old reader -	First reading -	Device off
	Second reading -	Device off.

New reader -	First reading -	Device off
	Second reading -	Device off

And the Winners Are...
Kathy Muldoon	WestJet Return Airfare
Bruce Moore	Toronto Maple Leafs Tickets
Joe Magnacca	Toronto Maple Leafs Tickets
Ron Wickens	DBR Racing Bicycle
Lizette Lacoursiere	Chill Prize Pack
Angelo Pellagata	A Week of Wine

Assorted Hoodies, Sweaters, Sweatshirts & Fleece Jackets Were Awarded to...
Alice Barrett	Sheila Chessell	Ray Daley
Gina Fagerman	Susan Hemsworth	L. Hendron
Dave Knight	Menad Lackovic	Wendy Leslie
Mike Morgan	Shari Ross	Ed Novakowski
Ljuba Orescanin	Milan Orescanin	Ana Popadic
John Quinlan	Kathy Muldoon	Peter Reid
Doug Richardson	Joe Sapienza	Mark Spurrell
Paul Ward	Wayne Wickens

Cost of Pacemaker for 1 patient		$40,000.
Cost of TPN for 1 patient	$800/wk
Weeks On Home PN ( to 10/22/09)	262	209,600
Additional Cost to OHIP by NOT re-inserting Pacing Device (excluding Dr. visits, Clinic follow-up, diagnostics, lab tests, etc.)		($169,600)

Shannon,	Kara,	Kayne,
Makenzie,	Tiffany,	Victoria,
Nicholas,	Samantha,	Nicole,
Michael,	Rachel,	David,
Kate.

Carol McAndrew	Matthew McAndrew	David McAndrew
Matt McAndrew	Kelly Amos	Sheila Eccles
Pauline and Wayne Isbester	Ted Chudleigh, M.P.P.	Jack and Ann Morrison
Michlynn Walton	Melissa MacLennan	Krista Burden
Ernie Parsons, M.P.P.	Isidore and Marcelle Philosophe	Hy and Judy Sarick
Gerry and Gaetane Lacoursiere	Heather Gilbae	Gordon R. Edwards
Sandy Gardner	Rita Jakobschuk	Rosanna Garcia
Charlena Tucsok	Cheryl and Ron Carlucci	Gloria Tomlinson
Kathy Muldoon	Irene LaFrenais	Lincoln Trudeau
Laura Hunter	Milan and Ljubica Kajganic	John Deighan
Anne Brown	Dr. A. Ryley	Dr. P. Brownrigg
Golden Horseshoe Serbian Association	The Black Dog Pub Staff and Patrons	Beta Sigma Phi Sorority, Oshawa/Whitby
Shari Ross	Sue Turchet	Sue Savoie
Wendy Solway	Shelley McMillen	Dr. E. Soucy
Dr. A. Sharma	Dr. L. Liu	Kate MacNaughton
Ray Rosenberg	Nat Merenda	Don Rodgers
Penny Ganetakos

Amplitude	The maximum strength of the current delivered along the electrical waves (wires) from the gastric stimulator to the stomach
CCAC	Community Care Access Centre. Community Agency that coordinates nursing and other services for patients who need them. Sometimes called Home Care, but that doesn't truly reflect the breadth of services offered.
Enteral Nutrition	Nutrition infused directly into the gut via a GJ tube
GES	Gastric Electro-stimulation
G-J Tube	Gastro-Jejeunestal tube. A feeding tube inserted into the small intestine. A nutritional formula is infused directly into the gut.
HDE	Humanitarian Device Exemption
HHS	Hamilton Health Sciences Corporation - includes McMaster University Site, Chedoke, Hamilton General, Henderson General Hospitals and Juravinski Cancer Centre
HPN	Home Parenteral Nutrition.
Impedance	A measurement taken to see the resistance between the patient's body and the device. Impedance is extremely high immediately following implantation and should decrease in value as the body begins to accept the device.
LYS	Life Year Saved. Life Years gained by a patient through use of new therapy
MAS	Medical Advisory Secretariat
MBS	Management Board Secretariat
MHLTC	Ministry of Health and Long Term Care. Also MOH
MUMC	McMaster University Medical Centre
OHTAC	Ontario Health Technology Advisory Committee
Parenteral Nutrition	Nutrition formulation infused intravenously. Also called TPN: Total Parenteral Nutrition
QALY	Quality Adjusted Life Year. A factor which quantifies a patient's quality of life in one year. 0.5 is recognized as the QALY for a bed-ridden patient
Volts	Electrical potential between two points along a connecting wire. In the WAVESS study, the voltage of the gastric stimulator was set to a constant of 2.6 v.

No Access to Health Treatment

Welcome

I Need a New Pacemaker I Need it NOW

Living With Gastroparesis Isn't Really Living At All

This is What My Life is Like

TPN in Real Time

The Simple Math

Advanced Math

A Gastric Pacemaker To Go

Chronology

Post-Surgery Update

Recovery and the Economy

Cue the Trumpets - Chris Meets Food

Taking Back Time

Winning with Gastroparesis

Contemplations

I Became an Orphan

Developing a Research Program

Humanitarian Device Exemption

The Politics of Medicine

The Mechanics of Health Care

Mr. Smitherman, You've Got Mail

Thank You for Supporting Me

Acronyms and Glossary

Climate Change: Parenteral Nutrition and the Environment

Non-Compliance Isn't Rebelling

What does $40,000 Buy?

Chris Becoming More Unstable

Chris Losing Steam

You Can Help

Run for the Cure

Something Stinks. It Isn't Me.

Have a Hum-Drum Day