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ADVOCACY, LIVING WITH BREAST CANCER, METASTATIC BREAST CANCER

Queen’s Park Advocacy Day: Making Noise for MBC

By Rethink Contributor October 29 2018

By Vesna Zic-Côté

Last week I had the opportunity to stand with a group of Rethink’s breast cancer advocates at Queen’s Park and call on our elected representatives to be allies to women with metastatic breast cancer. Forty-five of us used the power of our collective presence and voice to educate and inspire our government towards change.

This is the second time I’ve travelled from Ottawa to Ontario’s legislature for Rethink’s Advocacy Day.  Last year, I was part of the group that presented the #MBCintheDark petition with more than 10,000 signatures calling for better communications, more transparency and deadlines for drug negotiations.

That led to pCPA making commitments to timelines for negotiations for the first time.  This year we called on Ontario to be an ally to ensure these commitments are held up and that both government and industry are held to account.

This couldn’t be more important to me. But I also know that women with MBC cannot advocate alone. We need family and friends and early stagers to help make noise and be our allies.

I was diagnosed with breast cancer in 2012. I was 38; my kids were 2, 4 and 6. I had the standard care of surgery, chemo and radiation, and everyone thought I was in the clear. Low risk to reoccur, no major side effects from the treatment.  Off to Wellness, have a nice life.

But in 2017, I was diagnosed with breast cancer again. Breast cancer in my lungs, breast cancer in the bones in my neck, breast cancer in my lymph nodes. I was officially metastatic and incurable. One of the worst days of my life.

I got a new oncologist, one that came with excellent reviews and a penchant for difficult cases and thinking outside the box. We agreed to try a new treatment plan, one that not all of his colleagues agreed was the best course of action, one that was still relatively new.

Twenty months later, I am stable. Not cured, nowhere near it. The cancer still reminds me it’s there with the wheeze and the aches and the stiffness. But I’ll take it. With gratitude.

When I was first diagnosed metastatic, I realized that I had this window. It’s between diagnosis and progression. And in the window, I had an opportunity to make some noise.

Some noise to say early detection didn’t help me, not one bit. That too many people still live and die with breast cancer. That my doctor in Canada has fewer options to treat me than other doctors around the world. And I need for this to change.

When the second worst day of my life comes and my doctor calls me to tell me the cancer has grown and moved and changed enough times to make my treatment plan useless, I need him to have more than the handful of options currently available.

And some of these options have already been created. But they are too often stuck in endless price negotiations – negotiations that can go on for more than a year without any update or resolution and add to the uncertainty patients living with MBC already face.

Last week, I stood in front of the members of parliament and shared my story. They need to know why timelines are important.  And that we’re going to call on them to help make sure if the benchmark for negotiations of six months goes by, we will call on them to hold it to account. To be our ally. Because we need these treatments to be available when we need it most.

But I also need you.  When my window closes and my energy must turn inwards to focus on my beloveds and me, this is when I need each and every one of you to continue to speak up, not only for me, but for yourselves and for anyone with an ailment that will require new treatments. The MBC community is the trailblazer, but this is an issue that affects us all.

If you haven’t already, please sign the pledge to be an ally. Make a promise that you will stand up and make noise if the timelines for drug negotiations aren’t met. And share it, and encourage your friends and family to sign as too.  Because timelines and allies and accountability are important – like life and death important – for people like me.

~ Vesna


Vesna Zic-Côté is a member of Rethink’s Metastatic Breast Cancer Advisory Board. Initially diagnosed with breast cancer in 2012, Vesna is now in active treatment for Metastatic Breast Cancer (MBC) since early 2017.