Tuesday, September 20, 2011

this could be me

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca


Lene Andersen said...

this is so scary. ANd nonsensical. Are you going to submit your story?

Delaney said...

I would love to hear if/how you are involved in this issue! I'm also her2+, metastatic, and only continuing to receive herceptin because it is part of the trial I'm on (TDM-1 at Sunnybrook). I was previously on just herceptin after the initial chemo/herceptin combo wiped out my liver mets, but after almost 3 years, I recurred. Anyways, I did contact Rethink Breast Cancer about this very issue, knowing that if TDM-1 fails, I will be denied Herceptin again. I contacted them in the midst of the Jill Anzarut story, but they were very involved in that issue. I did receive several emails from them initially, but I've just neglected to get the ball rolling again. Anyways, I'd love to join the fight on this issue, let me know if you have any other thoughts! Otherwise, I will use the contact info from your blog post.
Delaney Janhunen

laurie said...

I don't really have a story to submit - yet. I have not relapsed while on Herceptin but I've been warned that this could happen.

Delaney: Your story is so much like mine! I was on vino+herceptin after the liver mets was diagnosed. I've been in remission for 4 years. Glad to know that there are TDM-1 trials happening here, as it appears to be a wonder drug for some women. I hope it works it's magic on you - and quickly.
I actually haven't done anything other than post this - although I've been meaning to. Thanks for the kick in the pants. I'd also like to connect with you. You can email me: laurie dot kingston at gmail dot com.