Wednesday, 28 December 2011

Entry 2: Funding in Ontario for HCV

It is a good day to get some paperwork completed on the funding applications I need to submit by next week in order to receive coverage for treatment costs not picked up by the insurance company. 

There is a misconception that Canadians have all their medical costs covered by the government.  This is not so.  

In 2001 when I was prescribed a drug called Sandostatin LAR for a diagnosed condition called acromegaly I was told the medication was not covered by OHIP.  I will need to be on this drug for the rest of my life. At the time the drug cost $2,100 every 28 days and was not covered. It has since come down to $1,800. I feel fortunate to have 85% of the costs covered through my insurance company which leaves 15% not covered. Many others do not have this support.  

I am told by the specialist this new HCV treatment will cost an estimated $70,000 dollars over a period of 1 year.  A drug representative quoted me $60,000. 

Currently, the Ontario Drug Benefit: Trillium Drug Program  provides assistance to those living in the province who are prescribed expensive drug treatments and are eligible for subsidizing.

Basically they want a copy of your previous year's income (T4 slips), proof of current income, your monthly expenses, along with your insurance company information.

The treatment of choice the specialist has prescribed is incivek, pegasys and ribavirin.

 Hep C and Lipid Droplets by Torsten Schaller
Take care,

Deborah

Tuesday, 27 December 2011

Entry 1: New Beginnings


In 1975 I was rushed into an emergency room in Calgary, Alberta.  I would be diagnosed with an unknown illness physicians considered to be a 'phenomenon'.  

Two years later during another stay in the hospital I would learn what this 'phenomenon' was. As attending doctor and nurses stood before me in full white protective jump suits, masks, goggles, gloves and footwear they asked me questions about my past medical history. After hearing about my previous admission to the hospital they explained to me they believed I had come in contact with a virus known as non-A, non-B hepatitis

They did not share much else so I went on with my life.  


Hepatitis Virus
 
I would not understand the implications or my responsibilities regarding this virus until about 1991. It was at this time I would hear this virus was dangerous and contagious with an appetite capable of consuming personal energy, time, relationships, good health and so much more.

Over the next 20 years I experienced numerous hospital stays, operations, biopsies, treatments, and challenges I seemingly was never prepared enough for.  Most of all, my biggest fear and regret would be the imprint all of this would have on my children and my partner.  

Some days I think this virus has denied the loved ones in my life as much as it has taken from me.  Other days I see the compassion, love and patience this virus demands and I experience a sense of gratitude for these gifts that may not have been birthed in the absence of this experience.

By May 2010, I realized my children's lives and careers were flourishing in ways they had hoped for and worked towards.  My career was maturing as was my education. For the first time in 21 years I was single.  My life was beginning to find a new  rhythm.


Hepatitis C Virus

Early December 2011, after completing one of my regular tune ups I was told the Hep C virus had picked up momentum and was now sweeping through my body faster than before. Devastated, I did my best to listen as the specialist recommended I begin a new treatment recently approved in Canada.
 
I originally turned down the treatment after reading the research I was able to find.  Upon talking to family, friends, and weighing my options I realized without the treatment I was looking at a high probability of liver cancer and failure. 


And here I am...about to start the journey.  I have decided to blog the experience in hopes that it will help me through the days, keep me company through the challenging evenings and perhaps offer hope and understanding to others.  

This is my journey.