Bitter about #BitterestPill
5 MINS to read
Band-aids don’t fix bullet holes.
Yes, I’ve resorted to quoting T. Swift. And yeah, I’m bitter over #BitterestPill.
I can tell I’m bitter because I’m not even waiting until after Tuesday’s Ontario budget announcement to write about my disappointment that funding to improve access to take-home cancer drugs was not included. The writing is on the wall and to be honest, we’ve already been discussing post-budget announcement strategies with our government relations team like “writing an op-ed expressing disappointment.” It’s so depressing.
Why do I sound so defeated? So certain that no news is not good news? The Ontario Government’s silence on this file speaks volumes. Years of advocating—advocacy days, meetings, dozens of media articles, reports, roundtables, budget submissions—resulted in the Government’s commitment to tackle the take-home cancer drug inequities faced by cancer patients younger than 65 in their 2022 budget announcement. Two years later, nothing has changed. Promises not kept. Follow up letters to Minister Jones sent jointly by Rethink and the CanCertainty Coalition over the past year have been completely ignored. Not even a quick note back indicating the letter was received let alone any type of meaningful response or update. That is a first. We have always had productive meetings with past Ministers of Health over the years. Now, we’ve been ghosted.
Rethink has always been a friendly disrupter, bringing tangible, realistic recommendations to government meetings. We know that being collaborative, understanding everyone’s pain points and challenges – including those of any government – is key to making change.
But enough is enough.
The current status quo is a box of band-aid solutions trying to make a cancer system created decades before precision oncology even existed work for today’s targeted treatments. The “band-aids” for cancer patients in Ontario younger than 65 are often a maze of administrative challenges, expensive out-of-pocket costs, and stressful delays in starting treatment.
And band-aids don’t work when it comes to cancer because the stakes are too high.
Last month, our friend Diane Di Cesare passed away from metastatic breast cancer. Diane was a Rethink Key Collaborator, member of Rethink’s Metastatic Breast Cancer Advisory Board since 2019, fierce advocate and the sweetest soul. She played major roles in our advocacy campaigns over the past several years, including being a key spokesperson for our #BitterestPill campaign.
Diane experienced a delay in starting treatment simply because she’s living in Ontario and was under age 65 and had a subtype of metastatic breast cancer that was best treated with an oral cancer therapy. And now she’s gone too soon. It’s so unfair. Cancer is unfair but when someone’s outcome is affected because of an unnecessary delay, that just feels cruel.
Even a 4-week delay in cancer treatment increases the risk of death by approximately 10 percent.
We learned about this devastating consequence of delaying cancer care by just a few weeks through a Canadian-led study published in the British Medical Journal in late 2020. I think it’s time to get a lot louder about this impact. While we speak to this startling statistic in all our meetings with elected officials, we haven’t been as vocal about it on social media. Even though we’ve historically been the ones to have the bold and uncomfortable conversations, perhaps we’ve been self-censoring with this one out of fear of increasing the anxiety of breast cancer patients in Ontario with subtypes that are best treated with a targeted cancer drug that is only formulated as a pill taken at home. Cancer patients live with uncertainty and those with advanced cancer, like metastatic breast cancer, live with extreme uncertainty. They don’t need extra stress.
But knowing the facts, even the scary ones, creates urgency.
All cancer patients in Ontario should receive their prescriptions for cancer medications taken at home without delay and at no cost, the same way that it’s done for patients prescribed IV therapies. The same way that it’s done in the majority of the provinces.
An investment of approximately $30 million per year will close the financial gap for take-home cancer drugs for uninsured and underinsured cancer patients in Ontario, which will directly impact 10,000 cancer patients per year. This is less than 1/10th of the current provincial healthcare spending and will eliminate the emotional, physical and financial burdens put on patients.
Tuesday’s budget announcement will be a non-announcement on take-home cancer drugs, which kind of marks the 10th anniversary of advocating on this issue. And I’m irate. But we have to keep going. Cancer patients in Ontario shouldn’t face health inequities because of their age, cancer subtype or socioeconomic status.
I started this blog post sounding bitter and defeated. I don’t know if it’s adrenaline from hammering out my frustration on my keyboard, or the inspiration I feel just thinking about Diane and Rebecca, our other beautiful spokesperson affected by this issue who has been experiencing devastating health setbacks and refuses to give up. But we are not giving up either. We can’t. We won’t.
Please help us by:
- Connecting with us if you or a loved one is a breast cancer patient in Ontario under age 65 currently taking or have taken Kisqali or Ibrance for metastatic breast cancer or Verzenio or Olaparib for early-stage breast cancer with a high risk of recurrence. These are the take-home, pill-form breast cancer drugs in question. Gathering patient experiences, even if you don’t want to share your story publicly, helps inform our continuing work on this issue.
- Sharing this with your network. People love to say, “early detection saves lives”, but it only does so when cancer patients access the treatment they need without delay.
Thank you,
MJ