Cost of CLL Treatment in Ontario

[Murphy63]

Hi all. I was diagnosed with CLL at age 48 and am now 52 and symptoms have progressed to the point where I expect treatment will be needed soonish. We are doing some financial planning, and I was wondering what I can expect in terms of personal cost for treatment of CLL in Ontario. My oncologist has indicated that there are programs available to assist with cost of drugs etc. that may not be fully covered by OHIP. I was wondering if anyone in Ontario could share there experience if any significant personal costs were incurred or what I should plan for.

Thanks in advance!

[New-bee-cell]

I am still watch and wait in Ontario, but it is my understanding that cost will depend on which treatment is recommended. My hematologist said, “Don’t base any major life/financial decisions on treatment cost”. If your oncologist is part of a teaching hospital, the social worker in the hematology or oncology department should been able to tell you about drug company compassionate care programs, special request forms for ministry of health/provincial drug coverage etc. If you have private coverage, your private plan may cover some. In general (but not always), drugs that are administered in hospital (think infusions) are covered while certain oral/pills may not. O + V are now covered as first-line (previously untreated patients) in all the Western provinces and Quebec - I think Ontario is still a bit more complicated, but hopefully your oncology team can help you navigate that! Kindest wishes for a successful first treatment and lasting remission!! 🙂

[Murphy63 in reply to New-bee-cell]

Thanks so much for the response.

[laldoroty]

I am 81 and started treatment in 2020, I started with six months of Betamustine and Rituximab and now am on maintenance of Rituximab every 12 weeks with one more treatment in July. All my treatments have been covered by Ontario. These are not the newer drugs but maybe my Oncologist prescribed me there because of my age and other conditions but so far it has worked and have been in remission since after the first 6 months. Here is a list of drug's Ontario covers. Good luck

[laldoroty in reply to laldoroty]

Sorry I forgot to include the list. cllcanada.org/treatment-acc...

[Murphy63 in reply to laldoroty]

Thanks so much for the information and link! Very useful.

[ivy39 in reply to Murphy63]

Hello. The coverage provided by Ontario also depends on your age. For someone under 65 I think provincial coverage differs from what is covered for seniors. I would definitely have my oncologist/hematologist connect me with whoever in the department is responsible for seeking coverage for you, from the province, private insurance or various compassionate programs of drug companies.

[Murphy63 in reply to ivy39]

Thanks for the reply and the suggestions. There are certainly seem to be a lot of factors in determining what treatment and/or cost recoveries one might be eligible for, including your markers, and even more so in Ontario vs other provinces where certain drugs are still under consideration.

[Northland]

I am in Ontario, age 62, diagnosed with CLL 3 years ago and on Imbruvica for 2 years. The Ontario Trillium Fund covers the monthly cost of the medicine except for a deductible based on your family income. My deductible would be $5K per year but Jannsen Pharma who make Imbruvica cover that deductible each year. So, my costs are covered 100%.

[Vizilo]

I was diagnosed with CLL at age 67 in Ontario. On w&w for 6+ years. Because of a nasty bacterial infection requiring hospitalization, I was placed on monthly IVIG 2.5 years ago and switched to weekly at home SCIG soon after. About 16 months ago, I was started on Acalabrutinib and currently am undergoing radiation of my spleen (to improve the effectiveness of the BTK inhibitor). During the 8 years, I have had numerous visits with my cll specialist, periodic blood tests, CT scans and ultrasounds.

I have no private insurance but I can honestly say I have not paid one cent for treatment. The continuing IVIG/SCIG is paid for by the government because of the threat of a repeat infection requiring hospitalization and the first year of Acalabrutinib was provided at no charge by AstraZeneca after which the provincial health authority started to pay for it. (Okay, I lied, the visits to the cancer centre initially cost me $27.50 for parking but I managed to find free parking 10 minute walk away🥳)

So for me anyway, the Ontario system has been very compassionate and with no significant costs.