May 2019

Founder Robert Davidson leaves a legacy with CPFF

Robert Davidson, CPFF Founder
It is with great sadness that we announce the passing of Founder Robert Davidson on May 1, 2019 at 71 years of age. He established the Canadian Pulmonary Fibrosis Foundation in 2009, less than two years after his own diagnosis and a few months before receiving a double-lung transplant.

“There is no doubt that the Canadian Pulmonary Fibrosis Foundation owes its existence to the determination and hard work of Robert,” says Kirk Morrison, President of the CPFF Board.

“He was an inspiration to so many, including others living with IPF, their families, volunteers and researchers.”

“Everyone I have met in the PF community knows him,” says Sharon Lee, Executive Director of CPFF and its first paid staff member, hired last year. “He rallied everyone and gave them hope. He launched our website providing reliable information about the disease for Canadians living with PF. He raised funds for research and started the support groups that were so desperately needed.”

In 2018, the first two Robertson Davidson Fellowships were granted. And this year, research funding may top $1 million in total. He leaves a monumental legacy of awareness, information and hope for the pulmonary fibrosis community in Canada and around the world.

Born in England on May 24, 1947, Robert and his wife Heather immigrated to Canada, where Robert pursued a career as a Chartered Accountant and they raised two sons. He was also a senior level soccer referee. It was difficulties he experienced during fitness testing to retain this status that led to his diagnosis of IPF at 60.

Rather than give in to the disease and die, he decided to fight and live as normal a life as possible, borrowing from Winston Churchill, the mantra “Never surrender.” You can read his own account of his journey and accomplishments in establishing CPFF in his 2018 last annual report as President CPFF.

“We are all incredibly grateful for his monumental contributions,” says Kirk, “and we extend our heartfelt condolences to his wife Heather, his sons, grandchildren and his many friends.”

Those who wish to honour Robert with a donation to CPFF, can do so online at:
https://www.canadahelps.org/en/charities/canadian-pulmonary-fibrosis-foundation/

Dixon Garden Funeral Home
166 Main Street
Markham, ON L3P 1Y3
Visitation on Sunday May 5th from 3 pm to 6 pm
Edmonton collaborative care approach for IPF delivers true patient-centred care

Dr. Meena Kalluri, a member of the CPFF Medical Advisory Board, pioneers an innovative IPF care model featured in NEJM Catalyst article
When Dr. Meena Kalluri talks about the patient-centred care delivered by the team at the Kaye Edmonton ILD (interstitial lung disease) Clinic and its community partners, her passion and pride is evident.

“When specialists talk about patient-centred care, the focus is still on diagnosis and treatment,” she says. “I believe that is just the bare bones of care. We focus on the individual’s needs after diagnosis and beyond basic medications and monitoring.

We’re talking to patients about quality of life, how to live their best life possible, advanced care planning and palliative care to support patient goals and wishes, right from their first visit with us.”

Last month this multidisciplinary, collaborative model to deliver early integrated palliative care to patients with IPF (idiopathic pulmonary fibrosis) was featured as a case study in the March 28, 2019 issue of the prestigious New England Journal of Medicine Catalyst journal. You can read the full article here.  You may also want to share the article with your own care team members.

The goal of the program, serving about 400 patients each year, is to create an integrated patient-centered approach for patients with IPF that systematically identifies and addresses escalating symptoms, improves advance care planning, reduces hospitalizations at the end of life, promotes living well and facilitates dying with dignity.

This model of care is the only one of its kind in the world, certainly in Canada or the United States, according to Dr. Kalluri.  The Catalyst article describes traditional care models: “(They) lack the infrastructure, care philosophy, and provider training to address the needs of IPF patients. Clinicians lack experience in providing anticipatory guidance (e.g. what to expect in the future, how to prepare for deterioration, or what to do and who to call in a crisis). In the absence of this type of care, guidance and support at home, patients in crisis have no recourse but to call 911 and go to the hospital, where they eventually die.”

“The challenge was to develop a care model to help individuals to live their best life while addressing their escalating needs from diagnosis to death,” says Dr. Kalluri. “And for each individual, their needs, preferences, and local resources, are unique.”

Along with multidisciplinary staff in the clinic, (physicians, nurse coordinator, dietitian, respiratory therapists, etc.) the care model relies on partnerships with individualized community teams developed according to patient needs and resources in each patient’s local community. These can include resources such as community home care, community pharmacists, oxygen vendors and support groups.

Patients are empowered from the outset with information and encouragement. Clinic visits can last up to two hours and each patient receives an education binder and training. And caregivers are actively involved from the start.

“We encourage patients and families to self-manage anticipated dyspnea, instead of waiting for it to happen. In doing so, they learn how to recognize their own risks for breathlessness, how to minimize them, and how various strategies can allow them to stay comfortable at home.”

The results of the program are impressive. Patients receive pain medication when needed and earlier than in traditional care, in which 71 per cent receive opiate treatment only within the last week of life. Patient preferences regarding care and death were documented in 84 per cent of cases within the first three clinic visits, in contrast to rates of 13 to 17 per cent in other clinics.

Hospitalizations were also reduced. There were no emergency visits in the last six months of life in 63 per cent of cases and no hospitalizations in the last six months of life in 35 per cent of cases. The majority of patients, 67 per cent, died at home or in hospice, in keeping with their wishes. Other researchers have reported rates of hospital deaths ranging from 57 to 80 per cent and rates of home deaths ranging from 0 to 14 per cent.

In addition, a survey of 15 patients and seven bereaved caregivers showed high satisfaction with care, with a median score of 4.7/5 for the domains of illness management, relationship with doctors and team, education, quality of communication, self-management, palliative care and engagement.

Here is what one bereaved participant in another article about the program said:
“I believe palliative care should be with you from when you’re diagnosed, saying “You know what, you’re terminal, but we’re going to help you live until you die.”  I figure you should enjoy every moment of your life. We don’t know, you could live two years, three years, you could live six months or a month. But if you could access someone and say, “This is the disease I have. What steps can I do to stay in my home, be happy in my home and as the disease progresses, who can I have, whether it be nursing staff, any access to anything that’s going to make my life at home easier for myself and my caregivers.”

Quote from study participant in article “Early integrated palliative approach for idiopathic pulmonary fibrosis:  A narrative study of bereaved caregivers’ experiences,” published in Palliative Medicine  1-10, 2018
Dr. Kalluri acknowledges that there are challenges and hurdles to implementing true patient-centred care for any disease, as well as ILD. “Physicians and health care systems must make the delivery of such care a priority. This requires training and most importantly resources, which can often be re-directed from savings realized in reduced hospital care. In fact, cost savings outweigh resource investment in this type of care, often by many times.”

She has first-hand experience of the frustration caused by the lack of prioritized resources. CPFF funded the nurse-coordinator position for the clinic for two years, with the understanding that the position would be funded by Alberta Health Services going forward. CPFF funding ended on March 31, 2019.

“Despite the excellent results we have shown and the reduced costs to the health care system, we have still not secured funding for this critical position in our clinic,” says Dr. Kalluri. She is not giving up though. She will continue to advocate for this care model, which truly puts patients at the centre of their care in every way.

PF highlighted in House of Commons statement

MP Frank Baylis
Frank Baylis, the Member of Parliament for Pierrefonds-Dollard congratulated the brothers Parvinder and Narinder Maloni for their fundraising success on behalf of CPFF in a recent statement in the House of Commons.

The family has raised more than $70,000 to date for the Parkash Kaur Ahluwalia Maloni Legacy Fund, which they established in honour of their mother. Parvinder Maloni

believes it was his late mother’s intervention that sent him the life-saving gift of a donor lung on Mother’s Day, 2018, five years after his diagnosis with pulmonary fibrosis. It was a medical intervention that was not available to his mother Parkash Kaur Ahluwalia Maloni, when she succumbed to the same disease in 1997 at the age of 73.
MP Frank Baylis attended an event to celebrate the success of the Legacy Fund held by the Maloni brothers in Montreal on March 16. You can view the statement by Frank Baylis clicking here.
Screening for myositis antibodies can mean a change in diagnosis for some ILD patients
A recent article in the journal Lung has caused quite a stir in the ILD medical community both in Canada and internationally, according to Dr. Lee Fidler and Dr. Shane Shapera of the Toronto General Hospital ILD (interstitial lung disease) Clinic. “We’ve had quite a bit of feedback through Twitter and follow-up phone calls,” says Dr. Shapera.

The article outlines a study that was conducted over several years and involved a review of

Dr. Shane Shapera

165 cases of ILD, in which patients’ blood was tested for myositis antibodies. Up to one third of patients with myositis – an auto-immune disease – have ILD as their first and dominant symptom. Other symptoms include rash, muscle weakness and arthritis.
“Essentially, we found that screening for these antibodies led to a change in diagnosis for 8.5% of patients.  For those patients, the results had major implications for their care,” says Dr. Fidler. While myositis-ILD treatment is focused on immune-suppressing medications, the same medications can increase mortality in patients with IPF (idiopathic pulmonary fibrosis).  Anti-fibrotic medications are currently unproven in the treatment of myositis-ILD and are routinely used to treat IPF.
“We find that some of our sickest ILD patients are the ones with myositis,” says Dr. Shapera, “yet when properly diagnosed and treated, many respond well and some can experience a dramatic recovery. For instance, one young woman is no longer on oxygen therapy and with proper medication is able to live a fairly normal life.”
In addition to a change in diagnosis and treatment, screening for myositis antibodies may prevent the performance of surgical lung biopsies for some patients.
Testing for myositis antibodies has only been available within the past five years and is not covered by Ontario health care. It costs between $150 and $250 per test. CPFF funded such testing for several years for this research project. The screening is now part of routine clinical care at the TGH ILD Clinic and covered by the hospital.
Dr. Fidler presented preliminary data of the study at a University of Toronto Annual Day in Respirology, attended by more than 250 respirologists.

“Our goal is to perform research that has a real impact on the lives of patients; this is what keeps us in the ILD field motivated,” says Dr. Fidler. “We are hopeful that we can continue to make such advances in treating these complex diseases.”

“We are very grateful that CPFF was able to support this important research early on and help our program to improve care for ILD patients in Toronto, across Canada and around the world,” said Dr. Shapera.
Mark your calendar for these upcoming events
Blow Bubbles for Pulmonary Fibrosis Month

September is Pulmonary Fibrosis Month, when we band together to increase awareness of PF in communities across the country. The Blow Bubbles for Pulmonary Fibrosis campaign is one way you can get involved in a fun and easy way.
This September invite your family, friends and colleagues to blow bubbles with you and post (pictures and/or videos) onto our Facebook page. Use with the hashtag #CPFFBubbles.

Share your story of who you are blowing bubbles for, by sending your story and pictures to admin@cpff.ca.

Contact media in your community asking them to broadcast, write about and take pictures of you and your group blowing bubbles and raising awareness of pulmonary fibrosis.

Clarke Walk for Pulmonary Fibrosis

Join the Clarke family on Sunday September 15, 2019, in Calgary, Alberta for the Clarke Walk for Pulmonary Fibrosis in support of the Canadian Pulmonary Fibrosis Foundation.

The Clarke family has several members living with PF. Help them raise awareness and funds to continue the work of the CPFF for a better future. To register for this event, click here. To donate and for more information, click here.

Scotiabank Charity Challenge
  1. Halifax – June 9th, 2019 Click here to donate or register to run/walk
  2. Vancouver – June 23rd, 2019
  3. Toronto – October 20th, 2019
We need volunteers to help solicit walkers and runners for the above events that are willing to collect pledges. Our goal is to raise $15,000 at each event. Please contact Executive Director, Sharon Lee at sharon@cpff.ca, if you’re able to help out.
First recipient of Robert Davidson Fellowship tackles the complexities of ILD

Dr. Alyson Wong is the first recipient of CPFF’s Robert Davidson Fellowship Award.
Dr. Alyson Wong is currently involved in several interstitial lung disease (ILD) research projects and is completing a Master of Health Science at the University of British Columbia (UBC). She also spends time treating patients in ILD clinics at St. Paul’s Hospital in Vancouver, shares her findings with colleagues at local and international medical conferences and engages with the local Pulmonary Fibrosis support group.

It’s all part of her work during the first 10 months of her two-year Interstitial Lung Disease fellowship, with funding of $90,000

per year from CPFF. “I am honoured to be the first recipient of the Robert Davidson Fellowship,” says Dr. Wong. “A highlight of this program has been the unique opportunity to improve care for ILD patients by advancing my clinical and research expertise in parallel.”

The goal of her first research project is to evaluate the economic impact of ILD in British Columbia and determine sources of diagnostic delay and the associated impact on patient outcomes. The aim is to identify health care inefficiencies that when addressed will reduce the time to diagnosis, improve patient outcomes and reduce health care costs.

Dr. Wong’s second research project will evaluate whether the presence of other medical conditions in patients with pulmonary fibrosis have an impact on lung function by using the Canadian Registry for Pulmonary Fibrosis (CARE-PF). This will be a multi-centre, national study using patient data from five provinces.

Her third research project involves identifying what features respirologists, radiologists and pathologists use to help distinguish chronic hypersensitivity pneumonitis from idiopathic pulmonary fibrosis (IPF). “It is important to make an accurate diagnosis and distinction between these two diseases because the treatments are different and could be harmful if used in a patient with the wrong diagnosis,” says Dr. Wong.

An essential component of research is sharing findings and knowledge. In February 2019, Dr. Wong presented a poster abstract at the Heart and Lung FEST in Vancouver. Later this month, she will present a poster at the American Thoracic Society International Conference in Dallas, Texas.

She is also an active member of multidisciplinary meetings where complex patient cases are discussed among physicians with an expertise in ILD. “This broad involvement and interaction of various disciplines is part of what attracted me to the ILD field,” says Wong.

“This unique opportunity to work with patients in clinic and pursue research simultaneously means my research questions and projects are focused on ‘real life’ questions and my research can have an impact on patient care.”