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Advocacy Update & Latest News from CF Canada: May 15

With Cystic Fibrosis Awareness Month in full swing, we’re pleased to share the latest advocacy updates and recent news from Cystic Fibrosis Canada:

#CFCantWait: ADVOCACY UPDATES

Constituency Member of Parliament Meeting Challenge

Our National Advocacy Network is holding constituency-based virtual meetings with Members of Parliament (MPs) across Canada, calling for access to Trikafta now. Our goal is to meet with as many of the 338 federal Members of Parliament as possible.

Our National Advocacy Network is a team of almost 250 volunteers who are trained and supported by our government relations and advocacy team. Collectively, our advocacy network is covering 55% of ridings for the constituency challenge. Right now, we need help to fill in the gaps in targeted ridings across the country. These gaps amount to 151 constituencies, or 45% of MPs.

If you are interested in getting involved, please contact advocacy@cysticfibrosis.ca, and put “Constituency Challenge” in the subject line. We provide training, support and mentoring for meeting with MP’s. We can help you prepare and partner you with an experienced advocate for any meetings you may have. After you send us an email, a member of our government relations and advocacy team will follow up with you in short order. 

One Step-Closer to Stopping Patented Medicines Prices Review Board Regulatory (PMPRB) Changes

One of the single largest barriers to getting Trikafta approved in Canada are regulatory changes that will drive drug prices down between 45%-75%. These changes take effect on July 1st. 

The PMPRB regulates excessive drug prices in Canada. It sets the maximum price that drug companies can charge for medicines in Canada. Provincial and federal drug plans can then negotiate prices down further.

Cystic Fibrosis Canada and the cystic fibrosis community are calling on the federal government to stop these changes, which are impacting access to Trikafta, and it seems like we are being heard. We have learned that a revised set of guidelines to support the regulations will be published on June 15th. There is some hope that we may see changes that will make it easier to bring drugs like Trikafta than what the regulatory changes first prescribed.

We must continue to work together to keep raising our voices to stop these changes and demand access now. For more information, please visit our website.

Last Chance to Show Your Support: Sign the PMPRB Petition Now

A community-led petition to improve access to cystic fibrosis medicines closes on Wednesday, May 20th. There are more than 12,000 signatures so far, but we know that there are countless more people across Canada who will show their support. 

The petition, to the House of Commons, is calling on the government to stop regulatory changes that will impede access to life-changing drugs, including CF drugs, like Trikafta. People living with cystic fibrosis can’t wait any longer. 

Interested in getting involved? Please sign the petition and ask your friends and family to do the same. 

Meeting with the pan-Canadian Pharmaceutical Alliance (pCPA)

A few weeks ago CF drug manufacturer, Vertex Pharmaceuticals, met with the pCPA to discuss access to modulators. The pCPA is the body through which drug prices are negotiated for provincial and federal drug plans. 

After the meeting, we heard from Vertex that our public drug plan leaders are not interested in further price negotiations for Orkambi and Symdeko. We are meeting with the pCPA on Wednesday, May 20th and will share updates after the meeting.

MORE NEWS

COVID-19: Provincial Reintegration Plans

Some provinces have begun to develop plans as to how and when they will start to ease the public health restrictions related to COVID-19. Each province has its own reintegration plan which we are monitoring and will be providing timely updates. See our latest updates on reintegration plans by province. 

Exploring Attitudes Towards and Impacts of the COVID-19 Pandemic on Individuals

Researchers from the University of Calgary are recruiting people living with cystic fibrosis (CF) to complete an anonymous survey on how COVID-19 has impacted their lives. The results of the survey will be used to provide actionable feedback to clinics/care centers and CF organizations during this time, so that they can better cater to the needs of individuals with CF. If you are interested in participating, or would like to learn more, please take a look at the survey. 

Walk to Make Cystic Fibrosis History: Virtual Challenge

Have you registered for the Walk to Make Cystic Fibrosis History: Virtual Challenge yet? If not, there is still time for you to register and start your fundraising efforts! This year, we are asking participants to #WalkYourWay4CF. For your Virtual Challenge, you can try challenging yourself to a bike ride, a walk around your backyard/ neighbourhood, or even a dance competition! The activity that you choose is totally up to you.

Have a challenge in mind? Be sure to share it with us on social media by using the official Walk hashtags, #WalkYourWay4CF and #walktomakecfhistory. 

When you register and fundraise for the Walk to Make Cystic Fibrosis History: Virtual Challenge, your support will help us continue to invest in world-class research, advocate for better access to life-changing medications and fund clinical trials. For more information on the Virtual Challenge, please visit our website. 

DID YOU MISS IT?

See the last #CFcantwait Advocacy Update blog post.