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Waiting for treatment in Ontario

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Posted 9/13/2015 2:12 AM (GMT 0)
Hi Everybody

I live in Ontario and have stage 2 hep. c. In July 2015 the nurse coordinator have sent all documentation regarding putting me on harvoni treatment to the government and my private insurance for approval. I have to add that I am past 65. My private insurance approved the treatment long time ago but still no word from OHIP.
My private insurance would pay for Harvoni treatment, but first ( I'm over 65) government has to pay or refuse to cover the cost of medication. So far 10 weeks passed and no answer from the government.
I wonder what was your experience in this matter.
Thank you.
Posted 9/13/2015 12:45 PM (GMT 0)
spodek

Welcome to the HW Hepatitis Forum. We are a group of patients and loved ones of those affected by all kinds of liver disease.

I am the caregiver type...and you can see below that my Mike has been through it all.

We have many members from Canada, some of whom have been through the treatment routine and fought with their "systems". Most eventually get it worked out.

Mike is about your age and has done both the transplant and treatment in FL and had any number of disagreements with his insurance. During the bad parts he was on Medicaid, our State insurance, and they were a pain sometimes....with all their special rules.

I am just guessing, but some in the UK and others with similiar state run insurance triage their treatment approvals..sickest first until they have reached the budgeted $$$ for the year and then make the rest wait.

I will check with my co-moderator themiz who is better than I am about keeping track of former posters and see if has the url for the good post on appealing and "encouraging" insurers to approval folks for their procedures and treatments.

The good news is that you are not in an END STAGE situation. Mike was at END STAGE liver disease when he got his transplant and carried the Hep C forward into the NEW LIVER...a bad situation but now he has been treated and we hope he gains some extra years with that new, but damaged liver.

Can you or your doctor reach out to the state? Can you? Is there a number?

I found this information on another site about Harvoni HELP in Canada:

For more information regarding the Momentum Program in Canada, please call 1-855-447-7977. - See more at:

www.gilead.com/news/press-releases/2014/10/health-canada-issues-notice-of-compliance-for-gileads-harvoni-ledipasvirsofosbuvir-the-first-oncedaily-single-tablet-regimen-for-the-treatment-of-genotype-1-chronic-hepatitis-c#sthash.jGp6akXX.dpuf

I have read that IF you have state insurance the Canadian help programs don't work. But I am thinking maybe they WILL help you with advice on how to get the govt program moving along.

Most here will say that curing Hep C before it gets really bad is imperative and a HUGE cost savings. Those in late stage have many problems that can be avoided...waiting until folks are desperatly ill seems crazy to me. But I can also see the argument that there isn't limitless funding. A huge dilemma.

Keep in touch and let us know how you worked this out.

Hugs,
Mama Lama
Posted 9/19/2015 4:10 PM (GMT 0)
Hello Spodek,

I understand your frustration, I am stage 2 Hepatitis C, diagnosed in 2005, I was offered the Interferon/Ribavirin treatment, but I refused because of the side effects involved.

I am in Stage 2 since last October and noticed an increase in fatigue and brain fog and have a hard time putting in a five day week.

I have a social worker who helped me enroll in the Trillium Drug Benefit Program and it took a long time to receive approval (4 months) meanwhile I had drug benefits from work who were willing to pay 80% of the drug, My Doc and his nurse enrolled me in the Gilead Momentum Program and they paid the rest. I was so elated, 10 years is a long time to wait. Life dealt me another curve ball when I was laid off from work recently, benefits ended Sept. 18th, I was in a turmoil thinking what am I going to do? I called my social worker and who confirmed approval to the Trillium Drug Program, whew! Dodged another bullet.

Here are the URLS for Trillium Drug Benefit Program (http://www.health.gov.on.ca/)

Don't discourage, also contact the Gilead Momentum Program in Canada and see what they can do. Never give up!
Posted 9/19/2015 7:11 PM (GMT 0)
Dorad, Thank you for posting IN here. It is so important that we share information so that others can quickly get the help they desperately need. When the brain fog of Hepatic Encephalopathy sets in, folks without a caregiver or advocate can get lost in the fight...it can be complicated and require dozens of follow up calls. We are so glad this worked out for you. Hugs, ML
Posted 3/27/2017 6:52 PM (GMT 0)
Consider trying to get a lawyer if they refuse you. University Law Schools have law students who help people, for instance.
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