CPFF- Pulmonary Fibrosis Newsletter published in April 2024

Clinical trials for new PF treatments in 2024 and beyond

By Todd Georgieff, Chair, CPFF Board of Directors

Sharon Lee and I had the opportunity to attend the American Thoracic Society (ATS) meeting and the Respiratory Innovation Summit in San Diego in May. We went to meet colleagues from Canada and the United States who are working in Pulmonary Fibrosis, and to learn more about any new treatments in development.

My own professional background is in clinical trial management and I am a pharmacist by training. So, conferences and understanding the development process for new treatments is familiar territory for me. We had done our research and went to the conference knowing about several new drugs in clinical trials, but we came away excited to learn about even more programs than we anticipated.

It’s been 10 years since the last new treatments for PF were approved, so it is encouraging to see so much activity. While I am very aware that there are no guarantees in evaluating the efficacy and safety of new drugs, and the rate of failure is still very high, the number of new treatments being investigated is encouraging.

More exciting still, several of the ongoing clinical trials include Canadian study sites. CPFF is exploring ways to bring more trials to more ILD centres, hospitals and clinics in Canada. It is a long process, but we believe that having more clinical research and experience and expertise in Canada will be good for our PF community and our health systems.

There has been some early investigations and speculation about COVID-19 causing pulmonary fibrosis or PF. This is true, but lung scarring left over after COVID-19 infection is distinct from that caused by other diseases, such as idiopathic pulmonary fibrosis (IPF), says Dr. Marinescu in his recent CPFF webinar. Specifically, lung scarring caused by COVID-19 is not progressive: scarring does not continue to increase over time and lung function stabilizes and usually improves as the patient recovers.

Most healthy individuals who get COVID-19 experience only mild symptoms and recover completely. In more severe COVID-19 disease where individuals are hospitalized or end up in intensive care units (ICUs) on ventilators, patients often experience lung scarring. If they survive the initial infection, they often go on to slowly recover some of their lung function over subsequent months, depending on their age and if they have other health conditions.

With the availability of vaccines, the risk of severe COVID-19 has been dramatically reduced. Far fewer COVID-19 patients end up in hospital or in the ICU. This is very good news for everyone, and especially for people living with progressive ILDs such as idiopathic pulmonary fibrosis , hypersensitivity pneumonitis (HP) or connective tissue disease interstitial lung disease (CTD-ILD).

Even before the advent of COVID-19, people living with progressive ILDs were advised to take precautions against any respiratory viruses, such as colds, influenza and pneumonia. Lung infections can trigger exacerbations for ILD patients, causing a sudden decline in their lung function which may not resolve when they recover from the infection. This is the same for COVID-19, which can be particularly harmful in those with pre-existing lung conditions like progressive ILDs.

Five tips to help protect yourself from respiratory infections, like COVID-19

Dr. Marinescu offers five tips for ILD patients to help protect yourself from infection and maintain lung health:

Avoid air pollution. Stay indoors, if you can, when the air quality index is poor, especially during forest fire alerts. A HEPA filter air cleaner at home can be a worthwhile investment, even if just in your bedroom, where you spend about a third of your time.

Get vaccinated. Vaccinations reduce the severity of infections. Get COVID and pneumonia vaccines as well as your annual flu shot. Consider getting an RSV (respiratory syncytial virus) vaccine, if you can afford it. It is not usually covered by provincial health authorities, but can be worthwhile if you have regular contact with young children.

Proper use of supplemental oxygen. If you use oxygen, increase as/when needed to maintain an oxygen saturation greater than 88 per cent. Use a pulse oximeter placed on your finger to determine your oxygen saturation. If you use oxygen, or are close to needing it, purchasing an oximeter to monitor your oxygen level is a worthwhile investment.

Exercise. Undertake a regimented exercise program to gradually increase your muscle strength, stamina, and endurance. Exercise does not improve your disease, but by exercising and keeping your muscles fit, your body uses oxygen more efficiently. You may want to consider a pulmonary rehab program, either online, or in-person, to help you get started. An exercise regimen is a requirement for transplant candidates.

Health eating. While no single food or food group has been shown to improve ILDs, eating a well-balanced diet and maintaining a healthy weight can help protect you against other conditions and is essential if you are considering a transplant.

Dealing with chronic cough and a clinical trial of a new potential treatment

If you’re living with pulmonary fibrosis and experience a cough as a bothersome symptom, you’ll be interested in watching Dr. Ėmilie Millaire’s presentation about dealing with chronic cough, as well as describing a clinical trial investigating a treatment that may provide relief.

In the video, Dr. Millaire begins by explaining why we cough; how a cough is medically classified; and a number of various causes of chronic cough, besides IPF, which should be ruled out or treated. She then addresses chronic cough and IPF, along with a number of treatment options, including medications and speech therapy.

When standard treatments are ineffective, unavailable, or not well tolerated, patients may also wish to consider participating in available clinical trials. One such clinical trial, currently recruiting patients with IPF and chronic cough at three Canadian study sites with a potential fourth site, is the CORAL trial.

The primary goals of this next phase of the CORAL trial are to:

Confirm the promising results from the previous trial of the drug Nalbuphine ER (extended release) in a larger number of patients with IPF, and
Understand how different doses of the study drug work to reduce cough in patients with IPF.

Dr. Millaire explains how Nalbuphine ER is a dual-action opioid that can potentially provide the therapeutic benefits of opioid-based drugs while minimizing side effects. She outlines the results of an earlier CORAL trial, with 38 participants, that had promising results with 76 per cent of those on nalbuphine ER reporting a 50 per cent reduction in their 24-hour cough frequency and 41 per cent of those on nalbuphine ER reporting a 75 per cent reduction in their 24-hour cough frequency.

Approved candidates will be involved in an approximately 12-week study, including six weeks of treatment with Nalbuphine ER tablets or a placebo. In-person visits for the trial will be conducted in four locations. (You may be eligible for reimbursement of travel expenses.) :

Dynamic Drug Advancement in Ajax, Ontario, east of Toronto, now recruiting.
The Centre for Lung Health Clinic and the Pacific Lung Health Centre, both in Vancouver, now recruiting
Centre d’Investigation Clinique de la Mauricie, Trois-Rivières, Quebec, not yet recruiting.

If you are interested in considering participating in this clinical trial, you’ll want to watch Dr. Millaire’s video for more details about what’s involved in the study, the benefits, risks and possible side effects. You can also find out more, and check your eligibility at www.CoralCoughTrial.com. When making your decision about participating in any clinical trial, you may also want to watch our educational webinar on Clinical Trials.

Let’s unite to shine a light on pulmonary fibrosis

Get ready to walk, roll and run for PF. The first of your community walks during CPFF’s 2024 PF Awareness Campaign is set for Saturday, August 17 in Avonmore, Ontario, with five other communities set to gather supporters to raise awareness, hope, and funds for people living with pulmonary fibrosis (PF) during August and September.

Join a community walk in your neighbourhood

Gather online with PF supporters throughout September and walk virtually

If you are unable to attend a community walk in-person, the virtual walk, taking place throughout September, is the walk for you. Walk alone, or with friends and family. And we’ve got activities planned to help you connect with other virtual walkers from across the country.

Virtual activities:

Virtual Meetup (Sept 10, 7pm EDT) – MEET & GREET: Meet other virtual walkers and pay tribute to your loved or share a cherished memory. Register here for this virtual meetup
Virtual Meetup (Sept 17, 7PM EDT) – FREE T-SHIRT & ADVENTURE SHARING: Bring your team, wear your free t-shirt, and share your walking adventures with other virtual walkers. Register here for this virtual meetup.
Virtual Meetup (Sept 24, 7PM EDT) – LET’S HAVE A MEAL TOGETHER: The first 100 CPFF Virtual Walk, Roll, Run registrants who also register for this meetup by Aug 15, 2024, will receive a free meal via e-gift card. We’ll gather virtually for a meal and fellowship with other virtual walkers and special guests. Register here for this virtual meetup.

Special bonus:

The first 100 individuals who register for the September 24^th meetup by August 15 will receive a free meal via an e-gift card. Click here to learn more.

Free t-shirts will be distributed to the first 50 CPFF Virtual Walkers, who register for the CPFF Virtual Walk, Roll, Run by August 15. Wear it proudly in your neighbourhood.

Register today for upcoming webinars

Sign up now for four, upcoming webinars, including two with holistic nutritional consultant Tracey Reed.

As part of CPFF’s 2024 awareness campaign, we’ve got some fun and informative webinars lined up for you. You can find them all on our events calendar on our website www.cpff.ca.

Sept 9, 1 p.m. EDT: Cook with Tracey Reed. Join Tracey Reed online as she creates a nutritious, anti-inflammatory, easy-to-make meal that your whole family will enjoy. Tracey is a Certified Holistic Nutritional Consultant, instructor at the Canadian School of Natural Nutrition, recipient of the 2018 Clinical Excellence Award and coauthor of Histamine Haven: the essential guide and cookbook to histamine and mast cell activation.

Sept 16, 1 p.m. EDT: Bake with Tracey Reed. Join nutritionist Tracey Reed as she creates a delicious, lung-friendly, easy-to-make dessert that will have your family asking for more.

Sept 25, 7 p.m. EDT: 2024 CPFF Patient & Caregiver Survey Report. Here’s your opportunity to find out the results of our spring 2024 patient and caregiver survey. Join research experts from Pearl Communications as they share the latest insights from the survey.

Oct 2, 1 p.m. EDT: Managing Medication Side Effects Through Nutrition. Get practical tips on using nutrition to manage common medication side effects like nausea, vomiting, reflux/heartburn, diarrhea and more.

CPFF website information now available in 15 languages

CPFF information is more accessible than ever with the addition of Google Translate to our website.

Google Translate is now available on www.cpff.ca to better serve our PF community. Check out the drop-down menu in the top right corner of the screen. Languages available include most of the top 10 languages used in Canada, as well as Japanese, Polish, Greek, Hindi, Korean and Persian. Let us know if there is another language that you’d like to see and we will try to include it in the future.

The translations only apply to written text and exclude images, video, and buttons. Some of these items are already available in French and others may be added a later date.

CPFF video library: View video captions in other languages

You can view captions for our vast video collection in other languages too! See instructions below.