New Report Reveals Major Gaps in Quality of Care for Canadians with Rare Lung Disease

Burden of Idiopathic Pulmonary Fibrosis in Canada report sheds light on barriers to treatment and resources for Canadians living with this debilitating condition 

MISSISSAUGA, ON, Nov. 20, 2019 /CNW/ - A new report released today reveals gaps in quality of care for Canadians living with idiopathic pulmonary fibrosis (IPF). The Burden of Idiopathic Pulmonary Fibrosis in Canada report reveals major disparities in access to treatments, resources and support services, as well as significant burdens placed on the health care system and patients. Developed in collaboration with the Canadian Pulmonary Fibrosis Foundation (CPFF) and Hoffmann-La Roche Limited, with input and guidance from a committee of IPF experts, the report concludes that immediate action must be taken to make meaningful changes that will help alleviate the considerable burdens associated with the condition.¹

IPF is a chronic, debilitating condition that causes irreversible scarring (fibrosis) of the lungs. The cause of IPF is unclear; however, as the disease progresses, the scarring typically worsens and makes it more challenging to breathe.² Although the prevalence of IPF is higher in Canada than many other developed countries and leads to the death of 5,000 Canadians each year, the disease frequently goes undiagnosed for many years.^3,4,5  IPF symptoms can be mistaken for other lung ailments such as asthma, bronchitis, or chronic obstructive pulmonary disease (COPD).⁶  

"IPF is difficult to diagnose, and some patients can be symptomatic for years before they receive a correct diagnosis," said Dr. Martin Kolb, Professor of Medicine, Division of Respirology at McMaster University, and contributor to the report. "Since IPF symptoms can be attributed to common ailments, awareness remains low. Few physicians are trained to identify IPF at first instance, creating a delay in the diagnosis that can lead to patient suffering. Increasing awareness and understanding of the disease are critical to help prevent late diagnosis, reduce the cost of care and ultimately improve patient outcomes."

In addition to the concern of delayed diagnosis, the report highlights important disparities in quality and access to health care services at the national level, with drastic differences from province to province. Key challenges around equal access to treatment include limited availability of interstitial lung disease (ILD) speciality clinics and respirologists, as well as eligibility and access to supplemental home oxygen therapy and pulmonary rehabilitation.⁷ These gaps can negatively affect health outcomes for Canadians living with the disease.

"It is never easy to receive a life-altering diagnosis like IPF, and it can be a scary and isolating experience to face challenges on your treatment journey," said Sharon Lee, Executive Director of the CPFF. "By shedding light on the challenges that people with IPF face in Canada, we hope to encourage policymakers and stakeholders to prioritize support for Canadians living with this disease, and ensure that all patients, regardless of which province they call home, have access to the high quality of care they deserve."

The burden of IPF extends beyond diagnosis, treatment and survival. Poor prognosis, uncertainty of disease course and symptom burden severely impact quality of life for patients and their support partners.⁸ Depression is also highly prevalent in patients with ILD due to impaired health and increased financial stress as many patients can no longer work full-time.⁹ The economic burden of IPF on the Canadian health care system is also significant, with increased hospital visits and in-hospital end of life care.¹⁰  The direct cost of IPF is comparable to or higher than that of asthma, COPD and lung cancer in Canada.¹¹

To address these significant burdens and challenges, the report provides easy-to-implement workable solutions that aim to increase awareness and understanding of this rare disease, lay the foundation for consistent and better quality of care across provinces, reduce economic burdens, and contribute to better outcomes for patients.¹² 

The full Burden of Idiopathic Pulmonary Fibrosis in Canada report and its recommendations are available at FightIPF.ca. 

About Idiopathic Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis (IPF) is a chronic, debilitating condition that causes irreversible scarring (fibrosis) of the lungs. As the disease progresses, the scarring typically worsens, making it more challenging to breathe. More than 14,000 Canadians currently live with IPF, equal to about the number of men (14,900) and women (14,500) diagnosed with lung cancer every year in Canada.^13,14  Several thousand among those living with pulmonary fibrosis (PF) will die from it each year. Unfortunately, little progress has been made in improving the poor three-to-five-year median survival rate associated with this disease, and due to an aging population and increase in incidence rates, the overall mortality rate has increased in the past 20 years.^15,16

For more information about IPF, visit FightIPF.ca, an online resource designed to inform and empower Canadians diagnosed with IPF and their families. Additional information about the disease, resources and support can be accessed through the Canadian Pulmonary Fibrosis Foundation at cpff.ca.

About Hoffmann-La Roche Limited (Roche)
Headquartered in Basel, Switzerland, Roche is a global pioneer in pharmaceuticals and diagnostics focused on advancing science to improve people's lives. The combined strengths of pharmaceuticals and diagnostics under one roof have made Roche the leader in personalised healthcare – a strategy that aims to fit the right treatment to each patient in the best way possible.

Roche is the world's largest biotech company, with truly differentiated medicines in oncology, immunology, infectious diseases, ophthalmology and diseases of the central nervous system. Roche is also the world leader in in vitro diagnostics and tissue-based cancer diagnostics, and a frontrunner in diabetes management.

Roche Canada was founded in 1931. The company employs over 1,000 people across the country, with its pharmaceuticals head office located in Mississauga, Ontario, and diagnostics division based in Laval, Quebec. Roche Canada is actively involved in local communities, investing in charitable organizations and partnering with healthcare institutions across the country. For more information, visit www.rochecanada.com. 

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1 Canadian Pulmonary Fibrosis Foundation and Hoffmann-La Roche Limited. The Burden of Idiopathic Pulmonary Fibrosis in Canada. November 2019. Available at: https://www.fightipf.ca/content/dam/fightipf/files/phase_4/en_ca/Burden%20of%20IPF%20Report%20-%20Updated%2015%20Nov.pdf

2 The Lung Association. Idiopathic Pulmonary Fibrosis. Available at: https://www.lung.ca/lung-health/lung-disease/idiopathic-pulmonary-fibrosis. Accessed August 16, 2018.

3 Hopkins RB, Burke N, Fell C, Dion G, Kolb M. Epidemiology and survival of idiopathic pulmonary fibrosis from national data in Canada. European Respiratory Journal, 2016;48(1):187-195.

4 Hewson T, McKeever TM, Gibson JE, Navaratnam V, Hubbard RB, Hutchinson JP. Timing of onset of symptoms in people with idiopathic pulmonary fibrosis. Thorax. Doi: http://dx.doi.org/10.1136/thoraxjnl-2017-210177

5 CPFF. IDIOPATHIC PULMONARY FIBROSIS PATIENT INFORMATION GUIDE. https://cpff.ca/wp-content/uploads/2016/05/IPF_Guide_2012_EN_Rev_Feb_2106_ForWeb.pdf . Accessed August 16, 2018.

6 Collard HR, Tino G, Noble PW, Shreve MA, Michaels M, Carlson B, Schwarz MI. Patient experiences with pulmonary fibrosis. Respiratory Medicine, 2007;101(6):1350-1354.

7 Canadian Pulmonary Fibrosis Foundation and Hoffmann-La Roche Limited. The Burden of Idiopathic Pulmonary Fibrosis in Canada. November 2019. Available at: https://www.fightipf.ca/content/dam/fightipf/files/phase_4/en_ca/Burden%20of%20IPF%20Report%20-%20Updated%2015%20Nov.pdf

8 van Manen MJG, Geelhoed, JJM, Tak NC., et al. Optimizing quality of life in patients. Ther Adv Respir Dis 2017, Vol. 11(3) 157–169.

9 The Voice of the Patient. U.S. Food and Drug Administration Patient-Focused Drug Development Initiative. https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm440829.pdf. Accessed Sept 12, 2018.

10 Lindell KO, Liang Z, Hoffman LA, Rosenzweig MQ, Saul MI, Pilewski JM, Gibson KF, Kaminski N. Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. CHEST, 2014. Doi: 10.1378/chest.14-1127

11 Tarride JE, Hopkins RB, Burke N, Guertin JR, O'Reilly D, Fell CD, Dion G, Kolb M. Clinical and economic burden of idiopathic pulmonary fibrosis in Quebec, Canada. ClinicoEconomics and Outcomes Research, 2018;10:127-137.

12 Canadian Pulmonary Fibrosis Foundation and Hoffmann-La Roche Limited. The Burden of Idiopathic Pulmonary Fibrosis in Canada. November 2019. Available at: https://www.fightipf.ca/content/dam/fightipf/files/phase_4/en_ca/Burden%20of%20IPF%20Report%20-%20Updated%2015%20Nov.pdf

13 Hopkins RB, Burke N, Fell C, Dion G, Kolb M. Epidemiology and survival of idiopathic pulmonary fibrosis from national data in Canada. European Respiratory Journal, 2016;48(1):187-195.

14 Canadian Cancer Society. Lung Cancer Statistics. Available at: http://www.cancer.ca/en/cancer-information/cancer-type/lung/statistics/?region=on. Accessed October 1 2019.

15 Olson AL, Swigris JJ, Lezotte DC, Norris JM, Wilson CG, Brown KK. Mortality from pulmonary fibrosis increased in the United States from 1992 to 2003. American Journal of Respiratory and Critical Care Medicine, 2007;176(3):277-284.

16 Lee AS, Mira-Avendano I, Ryu JH, Daniels CE. The burden of idiopathic pulmonary fibrosis: An unmet public health need. Respiratory Medicine, 2014;108(7):955-967.

SOURCE Roche Canada

Jennifer Mota, Roche Canada, E: [email protected], T: 437-219-7806; Hibaq Ali, Weber Shandwick, E: [email protected], T: 416-642-7915