Advocating on World Cancer Day 2024

*Note: This is a longer, more detailed version of the World Cancer Day email we sent out this morning! MJ dives deeper into Canada’s drug approval issues. Read on!

Despite January being the darkest, coldest month of the year, for me, it went by in a flash. I am not sure if that’s a good thing or a bad thing. I guess like everything, it depends. Our little Rethink team has been busy behind the scenes prepping, organizing, and laying the groundwork for the months of work ahead in 2024. But it seems like each year the world gets faster and faster. Maybe I’m just freaked out about AI, and it feels like the 24-hour news cycle we once complained about has now become a 15-minute social media cycle. And what we’re cycling through as we scroll, like and share has somehow become an even more divisive, echo chamber-y place to navigate misinformation and bots. Yikes.

Ok, breathe, right?

We closed off the year with a promise to be back in 2024 rested and ready to crank things up on our Breakthrough the Bullsh*t advocacy to improve cancer drug access in Canada. And we are. Our advocacy to improve the experiences and outcomes for people with breast cancer must and will push forward. We have to be even smarter and more strategic than ever about when and how we amplify our asks to decision makers.

Today is World Cancer Day. It’s a perfect day to make lots of noise on social media. This year’s World Cancer Day’s theme, “Close the Care Gap,” is all about raising our voices to engage our leaders to address health inequities. To quote the WCD organizers, “Where you live shouldn’t determine if you live.”

The truth is, Canada lags on cancer drug access.

Canada has a long, complicated, and duplicating drug approval process that results in access delays for Canadian cancer patients compared to the United States and much of Europe.​ This is not breaking news. And to be honest, when it comes to advocacy to improve access to innovative cancer drugs, I sometimes feel like we are caught in that frustrating time loop explored in the early 90s movie Groundhog Day.

Here we go again.

In 2017, Rethink launched a campaign called MBC in the Dark to raise awareness of the issues people with metastatic breast cancer face, in particular when it comes to the lack of transparency and accountable timelines in the drug approval process. At the time, price negotiations for a new, urgently-needed treatment for hormone-driven metastatic breast cancer were going on for far too long and we felt “in the dark.” Nearly 10,000 people, including many of you reading this, signed our petition asking the Ontario Minister of Health to champion our ask. As a result of the campaign, the pan-Canadian Pharmaceutical Alliance (pCPA), which negotiates drug prices on behalf of the provinces with manufacturers, committed to more transparency and announced negotiation benchmarks of 6 months. This worked for a while, but now we’re back to delays and distress.

It’s been extra frustrating that these delays are happening at a time when exciting advancements in cancer treatments are emerging. Recently, some of the new cancer treatments have shown such significant positive results in clinical trials they receive a “priority review” at Health Canada.

This sounds exciting – a treatment that can really make a difference where there is a glaring gap is going to reach patients ASAP. But that’s not what’s happening. After receiving expedited approval at Health Canada, these breakthrough drugs go back into the same, slow, first-in-first-out processes for all the other steps towards publicly-funded access, namely CADTH (cost effectiveness) and pCPA (price negotiations).

Cancer treatments that have been identified for priority review at Health Canada, should be prioritized and reach patients as soon as possible. This doesn’t mean the rest of the cancer treatments should go through the process slower. It means the handful that are extraordinary breakthroughs should be reviewed and negotiated quicker.

Because cancer patients do NOT have time to wait.

This is affecting people living with MBC.

Until very recently, there were no targeted treatments for metastatic Triple Negative Breast Cancer. If you were unlucky and your triple negative breast cancer (TNBC) metastasized, your only option was weekly chemo infusions, which typically provides a patient with one more year of life and usually poor quality of life at that.

So, in 2021, we were so excited that two new breakthrough treatments emerged for metastatic TNBC. And because of the absence of targeted treatments for the subtype, they were both given a priority review at Health Cancer through a program called Project Orbis.

But they were not expedited for the rest of the bureaucratic stages of our multi-step drug approval processes.

In fact, one of them was held up at pCPA for over a year. During that time, we were receiving frantic, desperate calls from metastatic TNBC patients and their loved ones trying to access the treatment. Negotiations are to take no more than 6 or 7 months, so we met with the pCPA at the 7-month mark to find out what was going on – and we were told they were waiting for a lead province to pick it up. Negotiations had still not even started. It took another 6 months.

This was not the first time pCPA told us they were “waiting to find a lead provincial negotiator.” The lead negotiator is provincial government employee who takes on the negotiation for a new drug in addition to their own provincial duties. There are no dedicated lead negotiators at the agency whose mandate is to negotiate drug prices.

The pCPA is unique in that it is an amalgamation of all 13 provinces and territories, and three federally-run drug plans. It aims to achieve greater value for publicly funded drug programs through their combined negotiating power. But now 13 years into the pilot program, it needs the funding and accountability that matches the critical role they play. We are pleased there are signs they are becoming more independent with the recent addition of a CEO role. We need this type of professionalization expedited so drugs are negotiated quickly and fairly, and most importantly, so they reach patients faster.

What we’re doing and how you can help!

For the past year or so, as we juggled supporting individuals trying to access these new treatments case-by-case, we were also planning for broader system change. That planning involved months of fact finding, considering different opportunities to identify the “ask,” and a lot of consultation with key stakeholders, including a lot of facilitated focus group meetings with our MBC Advisory Board Members. And then last October, Rethink launched Breakthrough the Bullsh*t. Because enough is enough.

A highlight of the launch was an incredibly successful Queen’s Park Advocacy Day in Ontario, sharing our message with dozens of Cabinet Ministers and Members of Provincial Parliament. We asked the attendees to help us champion our ask for:

• The development of a clear process to prioritize breakthrough drugs beyond Health Canada
• Expediting the professionalization of the pan-Canadian Pharmaceutical Alliance (pCPA)

It was a great kick-off but there is so much more work to do. We met with the lead of the Drug Program at Ontario Health in December. Our next steps will be to meet with the leads of all the provincial drug programs.

And while we’re working on the bureaucrats, we would love your help getting your own MPP or MLA and your provincial Minister of Health to be aware of the campaign and help champion our ask. From the comfort of your home, you can send a letter to your elected officials.

WRITE A LETTER WITH OUR TEMPLATE

We’ll be posting all day on social today about these efforts, including highlighting some of the letter writing action that is taking place at an in-person advocacy event we are hosting in Toronto!

For more about more about our Break Through the Bullsh*t campaign here.

Thank you for continuing to Break Through the Bullsh*t with us!

MJ DeCoteau
Founder + Executive Director
Rethink Breast Cancer