Get vaccinated as soon as you can
The Canadian Pulmonary Fibrosis Foundation has been receiving many inquiries from individuals with PF and their carers about COVID-19 vaccines, asking whether it is safe for them to get a vaccine, which one they should get, and when and how they can get a vaccine.
“We understand the anxiety in the PF Community about COVID-19 and the vaccines,” says Sharon Lee, Executive Director, CPFF, “especially with the appearance of new variants of the virus in Canada and the different vaccine roll-out programs and messages from across the country.”
There’s no doubt it can be confusing. Some provinces and territories have already started vaccinating older adults in the community, while others have not yet launched their systems to book vaccination appointments. In addition, as more vaccines are approved and become available, media outlets are reporting that some vaccines are better than others for various populations and against different variants.
Dr. Shane Shapera Director of the Interstitial Lung Diseases Program at Toronto General Hospital, UHN, is adamant that everyone with pulmonary fibrosis should get any one of the available COVID-19 vaccines as soon as it is offered to them. All of them protect against serious illness, hospitalization and death from the virus.
“The risks of the COVID-19 vaccines are very minor compared to the substantial increased risk of death among people with ILD or IPF,” he said during a CPFF webinar in January 2021 about IPF therapies. In his presentation, he refers to a recent European analysis of 161 people hospitalized with COVID-19 between March and May of 2020. The study found that patients with ILD had a high mortality from COVID-19, at 49 per cent, compared to 35 per cent for those without ILD. And hospitalized patients with IPF had a mortality rate of 60 per cent.
Experts across the country seem to agree that individuals should take the COVID-19 vaccine they are offered as quickly as possible. If you have any doubts, consult your physician or specialist.
To help you track vaccine programs in your province for when you may be eligible to receive a vaccine and to book appointments, please consult the appropriate provincial or territorial website addresses below. Check back regularly for updates.
For more information and resources for living with pulmonary fibrosis during the pandemic, please visit the COVID-19 section of our website.
Provincial and territorial COVID-19 vaccine information online
Newfoundland and Labrador
Prince Edward Island
CADTH and INESSS recommends nintedanib for treatment of other ILDs
Late last month, the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Quebec equivalent L’Institut national d’excellence en santé et en service sociaux (INESSS) recommended that nintedanib (Ofev) be reimbursed for the treatment of chronic pulmonary fibrosing interstitial lung diseases with a progressive phenotype under certain conditions. (You can read the CADTH summary report here and the INESSS report here.)
“We are very pleased that this first step in gaining coverage by provincial drug plans has been positive,” says Sharon Lee, Executive Director of CPFF. “We’ll now start planning our advocacy strategy for Ofev to be listed on provincial drug plans and eventually to be fully reimbursed by federal, provincial and territorial healthcare plans for treatment of other ILDs in addition to IPF.”
Ofev has been used to treat IPF patients in Canada since 2015 and, after determined advocacy efforts by CPFF, is now covered under all provincial health plans across the country for IPF patients.
In August 2020, CPFF made its patient group submission to CADTH and INESSS for this additional use for Ofev. You can read our submission, along with those of other patient groups to advocate for access to this medication for patients with other progressive fibrosing lung conditions.
Now that the CADTH and INESSS reviews are complete, the pan-Canadian Pharmaceutical Alliance (pCPA), a joint provincial/territorial/federal body, will manage the process of private negotiations with manufacturers to find acceptable, undisclosed, drug prices, eligibility criteria, and risk sharing arrangements (rebates, expenditure caps, etc.) Once negotiated, the provinces or territories still need to determine whether they will add it to their list of covered medications (formulary.) Each jurisdiction is responsible to its own government for fiscal restraints and so drug formularies across the country vary drastically, meaning that coverage for Canadians is not consistent.
Once a medication is accepted for inclusion on provincial approved drug lists, it will be covered by private drug insurance plans, partially or fully, depending on the individual’s healthcare plan. It needs further approval to be fully reimbursed by provincial drug plans.
“Advocating for treatment access, for any approved therapy, across the country, is a critical part of our mission on behalf of people living with pulmonary fibrosis,” says Lee. “It can be a long and involved process, but we are hopeful that this treatment will be covered by provincial health plans relatively quickly, since it is already available for people with IPF.”
If you have pulmonary fibrosis, especially a type other than IPF, and are interested in helping CPFF advocate for access to Ofev in your province or territory, by sharing your story, please contact Sharon Lee at [email protected] with your contact information and address.
Changes to Nova Scotia organ donation law should save more lives
As of January 18, 2021, eligible Nova Scotians who have not registered a decision regarding organ and tissue donation will be seen as having consented to organ and tissue donation after death. This is called “deemed consent” under the province’s Human Organ and Tissue Donation Act.
Residents of the province are being encouraged to let the people in their life know of their decision to ensure it is honoured. Families will continue to be consulted about their loved ones’ wishes regarding organ and tissue donation. Those who do not wish to make such donations, should register this preference – or “opt out.”
This new law makes Nova Scotia the first jurisdiction in North America to implement a policy of presumed consent for organ and tissue donation. And the change could increase organ donation by 30 to 50 per cent within the next five years.
Dr. Shaf Keshavjee, Director of the Toronto Lung Transplant Program, addressed the change in Nova Scotia while answering questions during a CPFF webinar in January. He noted that this is a significant change in organ donation legislation and that Nova Scotia should be commended for making the change.
“In the rest of Canada, people need to opt-in to make organ donations and the fact is, most people don’t think about it, or talk about with their families, or register as donors. So, if the time comes, the family is distraught and simply decide no and many organs that could have been transplanted are not used. This change in Nova Scotia means people are forced to address the decision about organ donation. I’m sure we will find that more organs are donated and hopefully the rest of Canada will follow Nova Scotia’s lead.”
According to the most recent figures compiled by Canadian Blood Services, 250 Canadians died while waiting for a transplant in 2019 — an increase from 223 in 2018. They also showed that Canada still has a shortage of organs, with 4,419 patients still waiting for transplants at the end of 2019.
No doubt other provinces will be watching how this change in Nova Scotia’s organ and tissue donation impacts lives in the province and beyond. For more information about the Nova Scotia Human Organ and Tissue Donation Act, you can read an overview here.
LBGTQ+ activist supports CPFF with proceeds from autobiography
Last fall, Gerard Veldhoven, a pioneer and champion of the LBGTQ+ community of Nova Scotia and beyond, published his autobiography A Passion for Equality: My Personal Journey. Born in 1940 in Bilthoven, Netherlands, his book touches on life under Nazi occupation and his family’s immigration to Canada in the 1950’s. The book relates stories of his life as a closeted gay man, who was married and had two sons, before he came to terms with his true identity and began another journey as an activist for equal rights.
He enjoyed a 36-year relationship with Norman Carter, who he was finally able to legally marry on October 16, 2004. It was one of the first such unions in the province. Media was allowed at the ceremony, attended by three clergy, to help promote social acceptance of same-sex marriage.
“I have an intense desire for positive change and I decided over four decades ago that I must participate in the change of direction for members of the LGBTQ+ community everywhere,” says the author. “So, I began to write. As a freelance columnist for several newspapers, I took on our government, religious leaders and all who would not give, or indeed allow, equality in all its forms.
“As a columnist, I had the opportunity to reach thousands and raise awareness. I felt that if I wrote a book presenting my experiences regarding the plight of LGBTQ+ citizens, here and beyond, I would be a proud contributor to a more inclusive society.”
Norman died in 2010, and Gerard subsequently retired from the upholstery and drapery business they ran together and moved from Amherst N.S. to New Glasgow. Veldhoven is now on another journey, one of living with pulmonary fibrosis. He is 80 and lives in an apartment with his “super friend” John. Veldhoven is on oxygen therapy 24/7 and takes several medications to ease his symptoms, manage pain and relieve anxiety.
He was diagnosed with COPD (Chronic Obstructive Pulmonary Disease) 20 years ago and in 2007 underwent surgery to replace a heart valve. Regular monitoring each year following his heart surgery, eventually led to the discovery of his PF in 2018.
“Following my relocation to New Glasgow from Amherst, my internist was sent an X-ray of my lungs and discovered I had pulmonary fibrosis. My coughing had increased and my breathing was becoming laboured. I was transferred to an internist in New Glasgow and he ordered a CT scan and pulmonary functioning tests. It was established that I had pulmonary fibrosis and it was severe.”
Life has changed dramatically as his disease has worsened. Gerard says he is fortunate that John is able to do the cooking and shopping for them both. And, on Tuesdays and Fridays he receives care from “wonderful” VON continuing care assistants, as well as nurses. He is also under the care of the palliative team at the Aberdeen Hospital in New Glasgow, who make certain his medications are up to date and that they are working. “They are a super team,” he says.
“My advice to others who are at the beginning of this disease is to make certain that you follow doctors’ orders and please do not wait for terrible long-lasting coughs and discomfort in the chest to go for tests,” says Gerard. “I waited too long and now my condition is serious and my daily routines are interrupted. I know my time is limited and that is the reality and I have accepted that fact. I am a realist and I take each day as another chance to contribute something, even if it is just making the effort to make a person smile. I try not to dwell on my IPF and having people around me is a great source of positivity. What would I do without the daily assurances of my friends and family?”
The support he receives from his brothers and their families is very important to Gerard. And he is looking forward to a visit from his son Mark at the end of the month and they plan to spend quality time together after his required isolation. “Mark, his wife Evelyn and my grandchildren Mia and Abby are a constant in keeping up my desire to be around as long as possible,” he says. Although they live in Toronto, they are always in touch.
Mark even designed the cover of his book. To date, Gerard has donated $700 to CPFF, which is a portion of the sales of his book so far. It’s another example of the generosity and community spirit that has been a hallmark of his life for decades as he has advocated for “equality for all.”
You can order Veldhoven’s book, for yourself, or as a gift, and a potion of the proceeds will be donated to CPFF.
Submitted by Moyra Martin
Sophia is a beautiful, six-year-old, grade one student living in Chestermere, Alberta, with her sister Lucy and her parents Leah and Michael Ficaccio. Her grandparents Jack and Audrey MacDonald have always had a very special presence in the lives of Sophia and Lucy. When their ‘Papa’ passed away from pulmonary fibrosis it was a difficult time, but they are so thankful for the many happy memories of their times together.
On a cold, snowy, January 17, Sophia, her parents, grandmother and sister Lucy visited me to share Sophia’s story. Sophia proudly presented me with an envelope for CPFF that contained $216.25.
Sophia and I had the following conversation:
MM: Sophia, where did you get the idea to collect pop bottles for Papa’s charity?
SF: My teacher challenged me and my class to show you love others like Jesus did to everybody.
MM: So, what was your challenge that you completed to show your love?
SF: I picked up pop bottles from the ditches and the streets to make my community clean.
MM: When you collected the pop bottles, your Dad asked you what you were going to do with the money from the bottle depot. What did you decide?
SF: To give it to Papa’s charity.
MM: Why did you want to donate this to Papa’s charity?
SF: Because he had a very bad disease and that disease was pulmonary fibrosis.
MM: You don’t want others to have this disease, do you?
SF: No, that’s why I am donating money to Papa’s charity, so that no one else will get the disease that Papa had.
Sophia’s actions reminds us all that in difficult and stressful times, we can still be kind and caring people. Her love for her ‘Papa’ and her family are examples of that love for others.
Build strength and achieve better balance with this new exercise video
A new video presentation by Dr. Darlene Reid, professor, University of Toronto, and KITE Rehab Institute Senior Scientist, aims to help you build muscle strength and achieve better balance. Created for the Lung Health Foundation, the video is designed for people with chronic lung conditions.
The video takes a practical, at-home approach and features a short series of exercises you can do at home. Dr. Reid explains how strength and balance exercises can improve your quality of life and how to know when you’re doing too much or not enough. She also offers some tips on staying motivated. This video gives you useful information, and demonstrates exercises you can do without a huge time commitment and at little or no expense.
Application deadline for research fellowships is April 16
If you, or someone you know, or maybe a physician on your healthcare team, is interested in applying for a CPFF Robert Davidson Fellowship, please direct them to the Research section of the CPFF website. Everything they need to apply can be found there, including the terms of reference and the Application Instructions and Checklist.
The CPFF is proud to support eligible physicians who wish to further their training in PF in order to advance clinical, translational, or basic science knowledge in the field and deliver excellence in clinical care to the PF patient community in Canada. The fellowship is named after Robert Davidson, the IPF patient and lung transplant recipient, who founded the CPFF in order to provide education and support for patients and families affected by PF and to support Canadian PF research.
The CPFF Robert Davidson Fellowship program supports two, one-year, $90,000 fellowships in PF in Canada each year, with at least 75 per cent of their time protected for research-related activities. The combination of clinical and research activities provides candidates with the opportunity for academic career development that will enable them to become key national and international members of the ILD community. Candidates will be expected to lead a research project at their training institution, with the goal of also participating in multicentre activities that will establish nationwide connections with other Canadian centres.