Q&A: New Pulmonary Fibrosis Foundation chief medical officer to focus on community

Key takeaways:

• Amy Hajari Case, MD, FCCP, looks forward to being chief medical officer during a time of “exciting” scientific and therapeutic development.
• 2025 marks the 25th anniversary of the Pulmonary Fibrosis Foundation.

Amy Hajari Case, MD, FCCP, has been named chief medical officer of the Pulmonary Fibrosis Foundation, according to a press release.

As part of the Pulmonary Fibrosis Foundation (PFF) medical staff since 2000, Case, director of the interstitial lung disease program and pulmonary and critical care research department at Piedmont Healthcare in Atlanta, plans to expand the reach of the Foundation and build the community in her new position.

Healio spoke with Case to learn more about her goals, work in the pulmonary fibrosis space and today’s trends in pulmonary fibrosis care.

Healio: What are your goals as chief medical officer of the PFF?

Case: At the PFF, we have an unparalleled program of support and education awareness not only for patients but also for their caregivers and loved ones. Additionally, we actively collaborate with our academic colleagues, industry partners and those in community practices on research and quality ILD care. One of my big goals is to grow the impact of all of the great work that we are doing.

Of the more than 250,000 patients that are living with pulmonary fibrosis in the U.S. today, only a fraction of them are seen in one of our 81 Care Centers or seven Clinical Associate sites. Not enough of them are getting access to the educational materials, the support groups and the resources that we have. I would love to better meet people where they are and to bring more people into our community. This doesn’t just mean patients and caregivers, but also pulmonologists and primary care providers that have may never heard of the PFF.

One of the ways we’re already working toward this is the PFF Care Center Network clinical associate sites. We have a pilot program currently going on with seven community-based programs that are each paired with one of our Care Center Network sites as a way to reach a little further out from those larger medical and academic centers and into the community practices. The Clinical Associate sites are touching more patients with high quality medical care and giving them access to the resources they need to live their best lives.

Additionally, it is an exciting time scientifically and in therapeutic development, I want to see us partnering with academic and industry researchers to find ways to bring more of the patients in our community into clinical trials. By increasing awareness of clinical trials, we can get more people involved and make more progress toward improved care for patients living with pulmonary fibrosis.

Healio: The release says that you serve as principal investigator on pulmonary fibrosis clinical trials. What is your biggest motivator in this work?

Case: I was introduced to clinical trials by a wonderful mentor in training, and that definitely started my interest in doing clinical research. I believe very strongly that clinical trial participation should be offered as a care option to all eligible patients that are living with various forms of pulmonary fibrosis because pulmonary fibrosis in 2024 is treatable but not curable.

We need to continue to build on what we’ve learned from decades of research as a scientific and medical community to develop better, more effective and better tolerated therapies for patients and expand the indications. We have antifibrotic therapies for patients with IPF and non-IPF pulmonary fibrosis, and we have increasing opportunities in the last couple of years for patients with pulmonary fibrosis to participate in clinical trials.

We don’t get better at treating these diseases without participation by patients that are living with the disease. All the preclinical evidence, mouse models and laboratory evidence in the world can be so promising, but that therapy has to be tested and proven to benefit actual living human beings before it becomes available for clinical use.

My approach in clinic is to review every patient that comes to see me and make sure that I’ve thought about whether they’re eligible for a clinical trial now, whether they are interested in participating in a clinical trial today/in the future, and whether that might be of benefit them. We have those conversations in my clinic routinely.

I think the awareness of clinical trials in the general population is not where we want it to be yet, so the PFF does a lot of work at educating patients and caregivers about clinical trials. Our website features a Clinical Trial Education Center that can teach patients and their caregivers about the different phases of clinical trials. We also have a trial finder for people who want to take that next step, look for possible options and see if they match with a clinical trial accessible for them.

Healio: What components make up the PFF’s strategic plan?

Case: We are in the process of developing our next strategic plan right now. It’s really exciting to take this on when the therapeutic pipeline is so promising. We’ve learned so much over the last few years, and there are new technologies and therapies in development that I think are going to allow us to personalize the care we’re giving to patients living with pulmonary fibrosis in the future.

As part of the process for strategic planning, we’re engaging with stakeholders from all parts of our community, meaning patients, caregivers, clinicians, different types of researchers and our partners in industry and government. We’re trying to understand what matters most to them with regard to pulmonary fibrosis and what new ideas are out there that we can get involved with, support and drive forward as an organization. We’re uniquely positioned to bring together those different members of the community where they might not naturally interact with one another. During this process, we’ll take a careful look at the science, the research, what we’re supporting and what we’re actively doing. We will also consider our education and support programs and look for ways to grow our community and make more patients and caregivers aware of the resources we have available.

Healio: How do you plan to uphold and advance this plan in your new role?

Case: Once the plan is in place, it will drive the strategies, the projects we do and the plans we make. We will take the strategic plan and turn it into actionable items, and those actions ideally will have results that we can measure over time to mark our success.

Fortunately, in this role, I get to be involved in just about everything we’re doing one way or another and collaborate with and support the members of our team that are working on all our different programs. This includes our registry, the PFF Scholars Program, educational programs, volunteer programs and more. I am just so pleased to be part of these teams alongside our other medical advisors, who support the CCN, the Registry and quality initiatives among other things.

Healio: Can you describe some of today’s trends in pulmonary fibrosis care?

Case: In 2024, we are looking back on 10 years of the clinical availability of antifibrotic therapies, pirfenidone and nintedanib.

When I started practice as a pulmonologist and ILD specialist in 2011, there were no FDA approved therapies for any type of pulmonary fibrosis. It became a different world for the pulmonary fibrosis community in 2014 as we were suddenly able to offer not just supportive care but also disease-directed therapy. I think we’ve learned a lot over the years about how to use those, and beyond the ILD centers, my pulmonologist colleagues in the community have become much more comfortable with using those therapies and caring for patients with pulmonary fibrosis. These antifibrotics really have been established as the standard of care therapy for pulmonary fibrosis.

Another thing we’ve become more attuned to is the development of pulmonary hypertension in the setting of ILD. With the availability of an FDA-approved therapy for group three pulmonary hypertension in ILD, I think people are becoming more comfortable with screening for and diagnosing this.

We should still see a lot of referrals to expert centers for management because these cases can get quite complicated. As a result, the relationship between expert centers and community centers has become stronger. Taking care of these patients is really a team sport, so I’m heartened to see these relationships develop.

Further, over the last few years, we’ve seen a definition for and recognition of non-IPF progressive pulmonary fibrosis (PPF) and expansion of indication, specifically for nintedanib, for use in PPF. I am glad to see the inclusion of PPF in many of today’s clinical trials. New therapies are now often being tested in parallel for both IPF and PPF.

Looking ahead, we are starting to see the impact of some technological advancements, particularly AI, on medicine. There are some really exciting applications for decision support and CT interpretation that will impact our patients with ILD. As long as we are thoughtful and appropriate with the development of those tools, I think it’s a very exciting space. We will have to learn how best to use these tools to better the care of our patients and make us more effective and more efficient for them.

Healio: What are some notable treatments being developed for pulmonary fibrosis/ILD that clinicians should keep an eye on?

Case: I was very excited when Boehringer Ingelheim announced a positive result in its FIBRONEER study, and I look forward to seeing those data presented sometime next year. They also have suggested that they are intending to present the data to the FDA, so it brings a light at the end of that long 10-year tunnel since the last time there was a drug FDA approved for IPF. We might be seeing a new therapy available for folks, and that’s really great news.

I’m also looking forward to seeing the results of studies that have targeted novel pathways in the fibrotic process. I think in general we’ve learned a lot from some of the other pathways that have been targeted, including some of the late-stage failures that we’ve seen over the last couple of years. Some of these novel pathways and the medications that affect them have had really encouraging early data, and I think there are lots of early phase 2 and phase 3 studies right now that are worth watching and that patients will want to participate in.

Additionally, I think it’s great that there are companies working on improving our existing antifibrotic products, either by route of administration or a slight change in that molecule that can promote tolerability. We’re all very glad that we have the antifibrotic therapies that we have, but we all agree that there needs to be some iterative change and new therapies available for folks.

There’s also interest in repurposing old medicines, an example of that being the PRECISIONS study that the PFF has supported. This is an exciting study because it is the first pharmacogenomic study in IPF, and it’s looking at a simple antioxidant medication, N-acetylcysteine, for people with a very specific TOLLIP genotype. It is fully enrolled, so we’ll see when the data are completed whether that’s of benefit to people or not. Information is also being collected as part of that study that will be used to further understand the disease process even if the N-acetylcysteine is not as effective as we hope.

Healio: In a year from now, what do you hope to have achieved in this role?

Case: One of my major focuses is again community, and we have a lot of opportunity to grow our community and reach out to those who don’t already know us. I really want people across the country, no matter where they live or receive their care, to know that they can turn to the PFF for reliable information and support. We’d like to engage these individuals in our Community Registry, which is self-enrolled and open to patients, caregivers, biological family members, and lung transplant recipients. The more people that participate in the Registry, the more valuable the data becomes.

I would also love to see additional growth in interest in pulmonary fibrosis research. We do a great job supporting young investigators through the PFF Scholars Program, and that’s been very successful with many of our Scholars going on to become funded investigators through NIH programs or other routes of funding. I would love to see growth in research funding from federal sources, such as the National Heart, Lung, and Blood Institute and the Department of Defense.

Our team at the PFF in collaboration with more than 20 other organizations in the U.S. have been working toward the Supplemental Oxygen Access Reform (SOAR) Act, and it is before both Houses of Congress now with bipartisan support. Our great partners, including those at the American Thoracic Society, the American Lung Association, the Pulmonary Hypertension Association and the COPD Foundation, have worked continuously to get their communities activated and involved in hopes of getting this bill across the finish line. One of the major unmet needs for this community is the provision of oxygen and how it’s delivered to patients. The SOAR Act has so much potential to improve people’s lives by easing that burden for them and getting them that access they need to the oxygen they need to live their lives.

Looking ahead, the PFF turns 25 in 2025, so it’s a big anniversary year for us. We’ll have all our great events that go on throughout the year, including our webinars, Broadway Belts for PFF! and walk program, but we’ll also have some special activities. The PFF Summit is Nov. 13 to 15 in Chicago, and registration for that will open in the spring. When anniversaries come up, it’s natural to reflect back over what we’ve learned and the progress we’ve made. I would also like us to focus forward — envisioning the next quarter century, considering what lies ahead for our community and identifying ways to drive progress that improves outcomes and quality of life.

Reference:

• Dr. Amy Hajari Case appointed as chief medical officer. https://www.pulmonaryfibrosis.org/about-us/news-and-media/news/article/2024/10/22/dr.-amy-hajari-case-appointed-as-chief-medical-officer. Published Oct. 22, 2024. Accessed Oct. 22, 2024.

For more information:

Amy Hajari Case, MD, FCCP, can be reached at acase@pulmonaryfibrosis.org.