The Canadian Pulmonary Fibrosis Foundation is pleased to announce two, $20,000 research grants for 2019-2020 and gratefully acknowledges the Parkash Kaur Ahluwalia Maloni Fund for supporting this year’s research grants.
One grant is awarded to Dr. Jolene Fisher, Clinical Investigator with the University Health Network (UHN) and Assistant Professor at the University of Toronto (U of T). The other grant is awarded to Dr. W. Darlene Reid, Professor at U of T and Dr. Dmitry Rozenberg, Clinical Scientist – Respirology at Toronto General Research Institute and Assistant Professor at U of T.
Dr. Fisher and her team will study IPF in Ontario, Canada. Her grant application states the following: “There have been significant advances in the IPF medical field over the past decade, with changes in the diagnosis and availability of effective treatments. However, little is known about the current number of people with IPF in Canada, their expected survival and use of healthcare resources. … Our primary objective is to determine the current incidence, prevalence, mortality and healthcare utilization of IPF in Ontario. This research will act as a foundation for health policy decision making, advocacy and future research designed to improve the care and health outcomes of people living with IPF.
Drs. Reid and Rozenberg and their team will investigate the changes to muscles during hospitalization with acute exacerbations of IPF. They describe their research project as follows: During hospitalization, the breathing muscles have to work harder because the lungs do not exchange oxygen as well. In addition, low oxygen levels in the blood and muscles can result in a reaction of small molecules that negatively affect the breathing and limb muscles. …The deterioration of breathing and limb muscles during hospitalization with respiratory exacerbation may be predictive of how individuals with IPF do after they leave hospital. The diaphragm (largest breathing muscle), if it becomes inflamed or reduces in size, can be an important indicator of survival after critical illness. Similarly, muscle wasting of the thigh muscles can indicate decreased survival in chronic obstructive lung disease. Although these muscle changes have been examined in other lung diseases, diaphragm and thigh muscles have not been studied in IPF during hospitalization and could have significant effects on outcomes.
We propose to study diaphragm and thigh muscle strength and their respective sizes during hospitalization and 3 months after discharge to better understand how these muscles change. In addition, we will measure if low oxygen levels resulting from whole body stress could damage skeletal muscle. Lastly, we will examine how diaphragm and thigh muscle size and function could affect mobility, daily function, quality of life, need for hospital re-admission and three-month survival.
This will be the first study to describe the changes in respiratory and limb muscles during hospitalization of people with IPF. Our findings of how muscle structure and function change during hospital will help with exercise planning, home supports and may ultimately help improve the quality of life of those living with IPF.
CPFF Research Grants are one-year grants of $20,000 each, which can be used to support clinical and/or translational research in interstitial lung disease. The proposed research project must have approval from the principle investigator’s institutional ethics review board. The principal investigator/applicant for a research grant must be either a physician, scientist or healthcare professional with an academic appointment and therefore eligible to apply for her/his own research grants as an independent investigator.
We look forward to reporting on the results of these CPFF research projects in a 2020 issue of Hope Breathes Here.
Dr. Andrei Vagaon, who just completed a one-year, $90,000, CPFF Robert Davidson Research Fellowship, has implemented changes and developed new tools to improve the lives of people living with pulmonary fibrosis, in Canada, and potentially the world. He has also improved his clinical skills as a respirologist and plans to help improve access to care in the Toronto area.
During his fellowship year at Toronto General Hospital’s (TGH) Interstitial Lung Disease (ILD) clinics, which treat thousands of patients each year, he has broadened his knowledge of how to approach and treat patients with pulmonary fibrosis. Newly qualified as a respirologist (October 2018), he has already been applying this knowledge in his own Toronto practice, helping patients live their best lives with the disease.
“There is something very basically human about meeting with people living with ILD,” say Dr. Vagaon, “When you cannot breathe, nothing else matters. It’s a question of survival and I want to help.”
The teaching, mentorship and guidance he has received at the TGH clinics has prepared him well to pursue his plan to partner with other ILD-trained physicians to start a dedicated clinic in another part of the city. “The increasing needs for care are likely to outpace the increase in resources,” he says. “I believe increasing ILD (Interstitial Lung Disease) clinic capacity is paramount to ensuring timely patient access.”
Asked about what drew him to respirology, Dr. Vagaon refers to his earlier studies in physiology and biology. “The processes of the body, including breathing, are so logical and interconnected,” he says, “fitting together like the pieces of a puzzle. I find this research fascinating and satisfying, because it can be used to help patients now.”
After completing his Bachelor and Master of Science degrees at the University of Toronto, Andrei pursued his medical studies at Queen’s University, earning his MD and completing a residency in internal medicine and then a residency in respirology.
With support from the CPFF Robert Davidson Fellowship, he was also able to complete a Master’s in Quality Improvement and Patient Safety this year. This has helped him to broaden his understanding of our health care system. “I’ve gained a much better appreciation of how to conduct health care needs assessments, root cause analyses, identify deficits in care and acquire the tools to enact change.”
Dr. Vagaon was able to implement such a change at the ILD clinic by initiating a project to increase the use of anti-acid medications in IPF patients with symptoms of acid reflux disease. His initial analysis found that only 36 to 60 per cent of the time (depending on the time period) was this guideline-suggested standard of care being met. To date, the changes he implemented, with the support of the team at the TGH clinic, have seen anti-acid medication use rise to 70 to 80 per cent of the time and is expected to rise to more than 95 per cent.
About 50 per cent of people living with IPF have symptoms of acid reflux disease and while a causal relationship between the two conditions is not certain, there is evidence that the use of anti-acid medications can slow the progression of IPF in some patients with the symptoms of acid reflux.
“With the lessons we learned at TGH, we, and others, should be able to implement other changes to optimize care at TGH or other ILD clinics,” says Dr. Vagaon.
Another research project pursued by Dr. Vagaon also has the potential to improve care for ILD patients beyond his own clinic and practice. In partnership with a member of the Computer Science and Artificial Laboratory (CSAIL) group in Boston, he has been able to develop an open-source, open-access software algorithm, which automatically measures body composition (muscle and fat tissue) in whole-chest CT (computer tomography), based on image recognition.
Determining body composition from chest CT images is currently a manual, time-consuming, process. “Automating this process will help us determine if body composition can be added to other clinical factors, such as age and gender, to help us help our patients,” says Andrei. So far, the algorithm is reliable about 80 to 90 per cent of the time, compared to analysis by a trained human evaluator. Continued development of the algorithm should see the reliability rise to 95 per cent or greater, and become available for clinical and research applications, around the world.
If body composition is then shown to be a determining factor in pulmonary fibrosis survival rates, then “nutritional and exercise treatments could become important factors in helping improve patients’ quality of life,” says Dr. Vagaon.
None of Dr. Vagaon’s clinical and research endeavours would have been possible without the financial support of the fellowship from the Canadian Pulmonary Fibrosis Foundation. “I am very grateful for this past year of ILD training. It has been an outstanding experience,” says Andrei.
Across the country, groups large and small are taking time this September to educate Canadians about pulmonary fibrosis as part of their Pulmonary Fibrosis Month activities.
For instance, a small support group in Prince Edward Island has decided to let Islanders know a little more about pulmonary fibrosis through community education. The local CBC affiliate on the island has given them a short time slot to talk about PF on Wednesday, September 18, at 6:00 p.m. local time on the nightly news show Compass. During the program, the group will promote an information afternoon to be held at the Stratford, PEI, town hall on September 24, from 1:00 p.m. until 3:30 p.m.
Guest speakers at the event will include: a drug company representative, someone from the University of PEI pulmonary rehab program, a dietician and a representative from an oxygen supplier. The afternoon will also feature a chair yoga instructor and refreshments. Following the guest speakers, members of the support group with IPF will be available to talk to people about IPF, how it affects them, medications and other topics.
In Burnaby, British Columbia, several groups, including CPFF, are working together to hold an education event featuring local pulmonary fibrosis experts and people living with PF on September 20, from 10:00 a.m. until 3:00 p.m. at Element Vancouver Metrotown, 5988 Willingdon Ave, in Burnaby, B.C.
While attendance is free, you must register in advance. To register, call the BC Lung Association at 604-731-5864 or e-mail: [email protected]. Space is limited. This event is intended for people living with PF and their caregivers. There is a limit of one guest per registrant.
An educational event is also being planned in Edmonton, Alberta, on September 18. More details will be available in the September 4 issue of Hope Breathes Here, and in the coming weeks on the CPFF website and on the CPFF Facebook page.
A PF patient education forum was held earlier this summer in St. John’s, Newfoundland, with a capacity audience of more than 55 people. Sessions included: An Overview and Updates on Interstitial Lung Disease with Dr. Gokul Vidyasankar; An Introduction to CPFF with President and Board Chair Kirk Morrison and Sharon Lee, Executive Director; Genetics in PF with Dr. B. Fernandez; Drug Therapy in Interstitial Lung Disease with Pharmacist L. Carter; Travelling with Chronic Lung Disease with Dr. Vidyasankar and D. Stone, a senior travel consultant; and Pulmonary Fibrosis Support Groups with patient expert John Hodder.
Ed Georges travelled almost 700 km from Corner Brook, Newfoundland, to St. John’s to attend the forum. He wrote this on his Facebook page: “Thank you to all that volunteered to make the Patient Education a success. It was very informative, educational and supportive. It is reassuring to know there are so many people to reach out to if needed! Glad I made the trip in from Corner Brook.”
Mark your calendar now if a PF education event is planned in your community this September. Like Ed, you’ll find it’s worth the effort.
Four years ago a school project inspired 12-year-old Abbie Clarke to do something to help both her family and her community. She started the Clarke Walk for Pulmonary Fibrosis in Calgary, Alberta, to raise awareness of PF and raise funds for research.
This year the Clarke Walk will be held at Edworthy Park, 5050 Spruce Drive in Calgary, on September 15 from 11 a.m. to 3 p.m. It’s a fun, family event for a worthy cause. You can register to walk or run yourself and collect pledges, or sponsor someone else, or just make a donation. Check out the web page here and watch the video where Abbie shares her story with you.
The Clarke family and CPFF gratefully acknowledges the contributions of the following sponsors of the Clarke Walk for Pulmonary Fibrosis.
Title Sponsor: Telus Corporation
Gold Sponsors: Stantec Consulting Limited and Telford Land & Valuation
Bronze Sponsor: Respiratory Homecare Solutions Canada Inc.
Communities across Canada are gearing up to increase awareness of pulmonary fibrosis and raise funds for education, research and support. Proclamations will be being issued by governments, landmarks will sport red and blue lights and groups of friends, colleagues and families will gather to blow bubbles in support of those who cannot summon the breath to do it themselves.
The theme of this year’s campaign is: Living with Pulmonary Fibrosis and Staying Positive with Every Breath. And with August 1, 2019 marking the 10th anniversary of the Canadian Pulmonary Fibrosis Foundation, there is plenty to foster a positive outlook.
“With research increasing our knowledge all the time, there is hope for the future,” says Sharon Lee, CPFF Executive Director. “And public awareness is critical when we approach governments to implement policies to improve the quality of life for people living with PF.”
Individuals are encouraged to gather their friends, family and colleagues to blow bubbles and then post their photos and videos on Facebook using the hashtag #CPFFBubbles. You could do it as part of your lunch hour at work or school, at a family dinner or picnic, or with friends or teammates after a game.
Please share your post with Sharon Lee at [email protected] or simply post it onto the CPFF Facebook page. Let your local media know when you are going to get together and ask them to cover your bubble blowing moment in their broadcast, newspaper or online.
In PEI, the local support group has made arrangements for a symbolic flag raising event at the Lieutenant Governor’s residence. The event will receive press coverage by the Charlottetown newspaper The Guardian.
Vancouver, Markham, Calgary and Toronto will all make proclamations declaring September Pulmonary Fibrosis Month. It may not be too late to have a similar proclamation made in your community. Contact Sharon Lee at [email protected] for assistance and a sample proclamation to submit to your local or provincial government.
Several landmarks across the country have already agreed to shine the light on pulmonary fibrosis by lighting up buildings and signs in the CPFF colours of red and blue. These include: BC Place, the Calgary Tower, the CN Tower, the Toronto sign at Nathan Phillips Square and the Toronto City Hall, Mississauga City Hall, the Hamilton City Hall sign and the Niagara Falls sign. Again, it may not be too late to make similar arrangements in your community for September. Contact Sharon Lee at [email protected] and she’ll send you the form letter to make such a request. And, let her know if you make such arrangements and post a photo on Facebook.
If you or a family member is living with pulmonary fibrosis, participating in one of these events or initiatives can make a positive impact on your outlook and offers hope for the future of all Canadians living with the disease.
Are you a highly motivated and experienced professional? Do you have exceptional interpersonal and communication skills? Do you want to make a meaningful contribution to the future of the pulmonary fibrosis community in Canada?
If you answered yes to these questions, consider applying for a position on the CPFF Board of Directors. The Foundation has recently embarked on an exciting and challenging journey to implement its three-year strategic plan. Become part of our volunteer team and contribute to the success of our plans.
The time commitment is reasonable: Six to eight hours a month (board meetings, preparing for board meetings, participating in committees and attending special events.) Occasionally, additional time may be necessary when working on a fundraiser.
Directors serve for a two-year term, renewable once, unless the Board of Directors make an exception for the individual.