July 2021 Newsletter (larger text version)

In this issue

Protect our Access: Update on PMPRB Changes

The federal government’s plan to push patented drug prices lower continues to meet with controversy. The changes to the regulations governing the Patented Medicine Prices Review Board (PMPRB) have aroused criticism from patient groups and the pharmaceutical industry, which are concerned that the changes will result in fewer life-saving drugs being available in Canada. Rather than being open to dissenting voices and facilitating a constructive debate, the Patented Medicine Prices Review Board, the government agency responsible for ensuring that the prices for patented medicines are not excessive, has declined to engage in good faith with patient organizations, disregarded their input into the PMPRB’s consultation process, and planned to discredit them publicly.

In May 2021, an internal communications plan of the PMPRB was disclosed through an Access to Information and Privacy (ATIP) request. It revealed the PMPRB’s intentions to undertake a public relations campaign, budgeted at $56 000 of public money, aiming to persuading the public – not so much with facts as with rhetoric – that the new regulations are unequivocally in the public’s interest, and to discredit patient organizations that have voiced concerns. The document specifically names the Best Medicines Coalition (BMC), the Canadian Organization for Rare Disorders, and “the CF community” (probably referring to Cystic Fibrosis Canada), claiming that they have been “spreading disinformation” and conflating their views with those of the pharmaceutical industry. (CCSN is one of the BMC’s member organizations. Cystic Fibrosis Canada has also expressed concerns about the new regulations and is a member organization of the BMC.)

Read the full article on our website

Learn more about our Protect Our Access campaign

Cancer Can’t Wait Update

After three waves of the pandemic, cancer patients are still being left waiting. Healthcare systems across Canada are struggling to catch up with their backlogs of surgeries and of screenings and diagnoses. Although rising rates of COVID-19 vaccination help protect immunosuppressed people, cancer patients who are not vaccinated, or who have had only one dose, are still more vulnerable than most. In short, cancer patients are still in double jeopardy from both delayed access to cancer care and COVID-19 itself.

Highlighted Webinars

Your Vaccine Questions Answered: COVID-19, Cancer & Immunocompromised Populations

The CCSN and the Lung Health Foundation organized a webinar to address concerns that cancer patients and other immunocompromised populations may have about the COVID-19 vaccine. The panel, consisting of an oncologist and infectious disease and vaccine experts, discussed vaccine safety, efficacy, prioritization, and next steps. Watch the video

CCSN’s Ontario Virtual Action Week: COVID-19 and Cancer Care – Wave 2

In April, CCSN met virtually with MPPs throughout Ontario to discuss our COVID-19 and Cancer Care – Wave 2 Survey. In this webinar, CCSN’s Public Policy Analyst, Conrad, shares some highlights from our meetings with Ontario MPPs; patient advocates share their reflections; and Conrad examines the Ontario data from our survey. Watch the video | View the slides

CCSN’s Virtual Action Week: Highlights from our Meetings with Alberta MLAs

During March, CCSN and patient advocates met with Alberta MLAs to discuss our COVID-19 and Cancer Care – Wave 2 Survey. In this webinar, we hear from Tim Monds, a lung cancer patient advocate, share some outcomes from our meetings, discuss the key findings from our survey, and take a closer look at the Alberta data. Watch the video | View the slides

Impact of COVID-19 Crisis on Cancer Patients and their Ability to Receive Treatment – Wave 2

In this webinar, CCSN and Leger presented the results of the COVID-19 and Cancer Care Disruption in Canada Survey – Wave 2. This follows up on our first survey, which revealed that the pandemic response has triggered another public health crisis. Watch the video | View the slides

Third Survey Status

Following on our previous surveys in July and December 2020, the CCSN has engaged Leger for a third survey of cancer patients, pre-diagnosis patients, and caregivers. This survey has new questions about COVID-19 vaccination: whether respondents have been vaccinated, and whether they were hesitant to get vaccinated because of their cancer; as well as about the financial impact of the pandemic on cancer patients. Stay tuned for the results!

Past Webinars

Wanted to attend one of CCSN’s webinars, but didn’t get the chance? Curious about what you might learn? They are all available on our YouTube channel! Below are a few highlights from our webinar archives.

Tumour Agnostic Treatments and the Future of Specialized Medicine

Tumour agnostic treatments target tumours by specific properties of their cells, not by their location in the body. In this webinar, Dr. Poul Sorensen speaks about how his groundbreaking discovery contributed to the development of tumour agnostic treatments. We also hear from a medical oncologist and a TRK fusion cancer patient. Watch the video | View the slides

Canada’s Drug Pricing Rules

Our presenters, Wayne Critchley and Ryan Clarke, explain the changes to the Patented Medicine Prices Review Board (PMPRB) and receive guidance about how to support the cancer community’s engagement at this stage of regulatory reform. Watch the video | View the slides

Rare Cancers: The Time to Act is Now

Diagnostic breakthroughs like genome sequencing make earlier diagnosis possible; and breakthroughs in personalized treatment provide new hope. CCSN welcomed Durhane Wong-Rieger, President & CEO of CORD, and Lisa Machado, Founder and Chair of the CML Network, for this engaging webinar on the unique issues presented in rare cancers. Watch the video | View the slides

CCSN Twitter: @ProstatePost

For news, information and resources related to prostate cancer, follow our Twitter account @ProstatePost.

Follow now!

Agree that Cancer Can’t Wait?

Tell your Federal Member of Parliament (Responsible for Pandemic Planning)

Tell your Provincial Representative (Responsible for Healthcare)

Donate now!

Nova Scotia Election

Do you live in Nova Scotia? Check out CCSN’s election question to the official parties and candidates! Election day is coming soon as Nova Scotians are going to the polls on August 17th.

Once again, CCSN has crafted an election question that we’ll be sending to all the official parties and candidates in the 2021 Nova Scotia Provincial Election. Understanding that COVID-19 is top of mind for many voters, this year CCSN has developed our election question based on the research work we’ve done in partnership with Léger, which revealed that the response to the COVID-19 pandemic has led to a crisis in essential cancer care.

We know that the government of Nova Scotia has a critical role to play in making sure that essential cancer care is not disrupted by COVID-19. With that in mind we asked those running for office in Nova Scotia:

“If elected, how will your government manage the backlog of screenings and surgeries, and ensure safe and timely access to cancer care so that patients across Nova Scotia can feel confident that their healthcare system will be there for them when they need it most.”

We look forward to sharing the responses to our election question, and we’ll continue to post the responses from parties and their candidates to our website as we receive them.

Do you have concerns about access to healthcare and cancer care as a result of the COVID-19 pandemic? Visit our website to read the entire election question and see how the candidates in your riding responded.

For more information on where and when to vote, visit the Nova Scotia Elections website.

Upcoming Events

HOOFING IT Around the Globe for Neuroendocrine Cancer Research

Canadian Neuroendocrine Tumour Society

From Thurs., July 1st to Wed., September 15th, 2021

HOOFING IT! is an event run by the Canadian Neuroendocrine Tumour Society (CNETS) for neuroendocrine cancer research. Participants create their own fundraising activities, either on their own or as part of a team, and travel as many kilometres as they can by whatever mode they choose – for example walking, cycling, swimming, etc.

Find out how it works and register here.

Just Sweat!

Carley’s Angels

Sat., July 24th, and Sun., July 25th, 2021

Just Sweat! is a two-day virtual event where participants get sweaty in support of integrative cancer care! You get sweat-activated clothing and can join Zoom movement sessions.

Carley’s Angels seeks to make integrative cancer care more accessible to all by funding programs that help care for the person as a whole, in memory of Carley Allison.

Find out how it works and register here.

Call for Abstracts Deadline Extended

Canadian Lymphedema Framework

September 1st, 2021

The deadline for the Call for Abstracts for the 2021 National Lymphedema Conference has been extended by 30 days to September 1st. The conference itself will take place virtually on December 3rd and 4th, 2021. The CLF encourages both new and experienced presenters to submit an abstract that showcases the work being done in lymphedema research or clinical practice. Click here for more information.

Canada Walks for Bladder Cancer

Bladder Cancer Canada

September 25th and 26th, 2021

For Bladder Cancer Canada‘s annual Awareness Walk, like last year, participants are encouraged to walk wherever they are. This is an important fundraising event for Bladder Cancer Canada’s support for patients and caregivers and funding for research.

Find out more and register here.

Retinoblastoma Research and You! booklet

Canadian Retinoblastoma Research Advisory Board

Retinoblastoma is a rare childhood eye cancer. Treatment and follow-up for retinoblastoma patients can be stressful and confusing for them and their families. People affected by retinoblastoma have indicated that they want to learn about and help shape the direction of current research.

The Retinoblastoma Research and You! booklet was created to raise awareness about and catalyze patient engagement in retinoblastoma research in Canada. It highlights real-world examples of patient-partnered research activities and opportunities. You can download it here.