Latest News from CF Canada – March 27
MARCH 27, 2020
COVID-19 INFORMATION & SUPPORT
Across the world, everyone is dealing with the fallout of the COVID-19 pandemic, and for people living with CF and their families, the risks and challenges are even more significant. Living with CF is difficult at the best of times, but we know how resilient the CF community is, and Cystic Fibrosis Canada is here to help in any way we can.
CF Information & Referral Service
Our Information & Referral Service is available, and we are regularly updating our COVID-19 & CF Q&A page. We’re also regularly updating our website with clinic information by province, where you can find information and updates specific to your CF clinic, and government supports both federal and by province.
If you have any questions or concerns that are not addressed on these pages, please send an email to our Information & Referral Service at advocacy@cysticfibrosis.ca or call us at 1-800-378-2233 ext. 403 and we will do our best to assist you.
Coming soon: Ask the Expert web series
Many of you who are living with CF have questions about the COVID-19 pandemic and how you should change your routines, your treatment regimens and clinical care. At this busy time, you may not be able to reach your CF clinic teams in the same way you are used to.
To help ensure that you can get answers to your questions about CF and COVID-19, we’re launching an Ask the Expert web series starting next week. Each session will feature a Canadian CF clinician and will offer people a chance to have their questions and concerns addressed. This is currently in development. Follow our social media channels for upcoming details of when and how to tune in.
CF Clinical Trials and COVID-19
CF Canada’s clinical trial network, Cystic Fibrosis Canada Accelerating Clinical Trials, advises that trials will not be enrolling new patients at this time due to the COVID-19 pandemic. For patients who are currently participating in a clinical trial, situations may arise where practices need to be modified in order to safeguard the well-being of individual patients and the CF community. This may include; visits outside the hospital, virtual visits, local lab testing, and/or shipping of drugs.
While we are committed to promoting continued excellence in research, the safety of our community is one of our main priorities. If you have any questions on how clinical trials may be affected by COVID-19, please send an email to clinicaltrials@cysticfibrosis.ca, or contact your study research coordinator.
An update on CF Canada events
As a result of the pandemic, we have made the decision to move our largest national fundraising event, the Walk to Make Cystic Fibrosis History to a virtual format. The date for the event will remain Sunday May 31st.
If you have already registered, your registration is still valid and you are automatically now a ‘virtual walker’. Please register, fundraise and donate to help make the event a success in spite of these challenging circumstances, and stay tuned for more information about how we’re ‘going virtual’. This is an important event for the CF community and we hope you will join us in our Walk to Make History.
CF Canada CEO, Kelly Grover, has provided an update about further CF Canada event impacts as a result of COVID-19. Please contact your regional CF Canada office if you have specific questions.
#CFcantwait: ADVOCACY UPDATES
HCCC Letter to Patty Hajdu
On March 23rd, the Health Charities Coalition of Canada (HCCC), Canadian Organization for Rare Disorders (CORD), the Best Medicines Coalition (BMC), alliance des patients pour la santé and Regroupement Québécois des Maladies Orphelines (RQMO) sent a joint letter to the federal Minister of Health, Patty Hajdu.
The letter called on Minister Hadju to halt the implementation of changes to the Patented Medicines Prices Review Board (PMPRB) regulations in light of COVID-19, and the need for more consultation. CF Canada is an active member of Health Charities Coalition of Canada, Canadian Organization for Rare Disorders, and the Best Medicines Coalition. This letter is aligned with our call for a stop to the regulatory changes so that we can ensure that access to innovative medications, like Trikafta for people with CF, are not impeded.
Letter to Vertex
Together, with our Health Advisory Council Chair, Dr. Mark Chilvers, CF Canada sent a letter to Vertex calling on the company to quickly provide access to modulators for Canadians as a humanitarian measure during this time of crisis.
Stopping the PMPRB changes
We continue to put pressure on the PMPRB to stop the implementation of the changes which will limit access to new, life-changing medications like Trikafta. We are writing to the PMPRB board to request a virtual meeting in lieu of the meeting that was cancelled.
COMMUNITY IN ACTION
Do you have anything you’d like us to share? We want to see your CF related stories, news, pictures and updates, and possibly share them! Email us at hello@cysticfibrosis.ca to submit your content.
THIS WEEK’S MEDIA COVERAGE
- P.E.I. woman with cystic fibrosis needs Islanders’ help to stay healthy during COVID-19
- For people with cystic fibrosis, COVID-19 fear amplified
- If you have Cystic Fibrosis, COVID-19 is a death threat
- Stay home, parents of at risk 4-year-old child plead, because his life depends on social distancing
DID YOU MISS IT?
- Last week’s #CFcantwait advocacy update from March 19th
- Kelly Grover’s latest message about CF Canada & COVID-19
- Our COVID-19 Q&A for the CF Community