Lung Research at 50: A Q and A with Dr. James Kiley on the 50th year of the National Heart, Lung, and Blood Institute and what lies ahead
Posted on February 26, 2020 |
This article was written by Jamie Sullivan, MPH
The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, is responsible for funding the majority of COPD-related government-supported research. Without the research that NHLBI funds, it would be nearly impossible for other stakeholders to develop new treatments and deliver care that improves health and quality of life. While we will never stop advocating for the NHLBI to invest more in COPD research, their accomplishments and their commitment to meeting the needs of people with COPD is without question.
Throughout 2019, the pulmonary community celebrated a milestone in medical research, the 50th anniversary of the NHLBI. What does the 50th anniversary mean for the COPD community? What does the dedicated team at the NHLBI hope for the future of COPD research? To explore these questions and more, Dr. James Kiley, the Director of NHLBI’s Division of Lung Diseases and was kind enough to participate in our Q and A.
Dr. Kiley touches on the mission of the NHLBI, how research has contributed to the differences in patient’s lives today compared to 50 years ago and more.
We also asked leaders of the COPD Foundation Scientific and Medical team: Dr. Barbara Yawn, Dr. Ruth Tal-Singer and Dr. Byron Thomashow what they are most excited about as we enter the next decade of partnerships with the NHLBI and the research community.
Dr. Tal-Singer conveyed "the impact of NHLBI’s partnership with the COPD Foundation is reflected by the identification of features that redefine the diagnosis of early COPD in people with preserved lung function the SPIROMICS and COPDGene studies and improved recognition of COPD in the CAPTURE study."
Dr. Thomashow noted that the NHLBI’s decision to invest in several large COPD studies has made it possible for the Foundation’s COPD Biomarker Qualification Consortium to advance towards better drug development tools that will help us get closer to a world where COPD treatments are targeting earlier and distinct phenotypes of disease.
Dr. Yawn expressed profound gratitude to the team at NHLBI but also noted that there is one more critical stakeholder to thank and that is you, the COPD community that has stepped up to participate in the research NHLBI funds. Without your willingness to get involved, good ideas and future discoveries would sit idle and unfulfilled.
Read on to hear directly from Dr. Kiley and share your thoughts by commenting below. What are your hopes for the next decade of COPD research? Have you participated in a clinical trial? Share your reasons why research participation was right for you.
Want to learn more? The Journal of the COPD Foundation recently dedicated an entire issue to celebrating the scientific accomplishments of the NHLBI. Read more at https://journal.copdfoundation.org/all-issues/past-issues/volume-6-issue-4.
Want to help us power the next generation of scientific advances? Learn more about the COPD Patient-Powered Research Network at www.copdpprn.org.
1. How has NHLBI research helped shape our understanding of COPD over the last 50 years?
In 1969, the National Heart Institute, part of the National Institutes of Health (NIH) was expanded to become the National Heart and Lung Institute to consolidate pulmonary research from across NIH under one entity. The five areas the Division has pursued and continues to foster are:
- Elucidate the basic processes of diseases as a key to developing treatments,
- Fund research that can inform patient care and their well-being,
- Foster science through partnerships and multidisciplinary teams,
- Train researchers in the latest techniques and apply them at the patient level, and
- Develop new methods to guide the research of tomorrow.
These five guiding principles have helped expand our understanding of a complex disease like COPD over the last 50 years.
2. When you think about what a patient's life with COPD was like 50 years ago compared to today, what are some major differences you can point to and how has NHLBI research contributed to these differences?
Over the past 50 years we have seen progress made in understanding several aspects of the disease. People may remember how once COPD patients were simplistically divided in the textbooks into pink puffers and blue bloaters. We have now gained a better understanding of the subtilties that characterize COPD in each patient, with each patient having a specific trajectory of the disease and associated therapeutic needs. The collection of therapeutic interventions also expanded with, for example, once-a-day treatments available now.
Prevention of exacerbations is now a mainstay of COPD treatment. The Division funded several studies that contributed to this progress like the NETT which assessed the efficacy of surgical removal of parts of the lungs to ameliorate the disease in a selected subset of patients or like the antibiotic azithromycin trial which showed prevention of flare-ups (exacerbations) of the disease in patients prone to exacerbate. Both treatments are now an integral part of the guidelines for COPD treatment. The breadth of the research in COPD funded by the Division covered and will continue to cover many different aspects of the disease, from finding which patients most benefit from the use of oxygen to methods to reach an early diagnosis, to ways to stop the progression of the disease utilizing new or re-purposed drugs.
3. The NHLBI has funded several large cohort studies that are currently underway. What do you expect these large pivotal studies like COPDGene, SPIROMICS and CAPTURE, to contribute to our understanding of COPD, how we diagnose and treat it and what the patient experience with COPD is over the next 5 years?
Since its beginnings, the Division of Lung Diseases has released over 350 research initiatives and has expanded to now fund about 1,800 grants and contracts each year. While not all of them target COPD directly, knowledge about what causes other diseases and how treatments work that comes from other studies also inform COPD (e.g. a diagnostic or a drug relevant for asthma could be applied to COPD). In turn, COPD research informs, for example, other diseases like asthma or pulmonary fibrosis.
Large studies funded by the Division like COPDGene, SPIROMICS, and CAPTURE, are contributing to a better understanding of COPD, its causes and how we diagnose it and treat it. These research venues have the potential to change the patient experience with COPD over the next 5 years by modifying the course of the disease for those already diagnosed and by allowing early detection of the disease, its treatment at any stage, and the identification of those at risk of developing it.
4. How have patients contributed to the NHLBI's work? Has the role of patients evolved over the last 50 years and how do you see it transforming over the next 5 years?
No progress in COPD could have been made without the participation of COPD patients to research, both basic and clinical. You cannot tackle COPD if you do not know what’s happening with the patients. Indeed, the biggest change in this time period has been the role that patients have in research.
Medicine has transitioned to a patient-centric model, where what is important to the person with COPD (i.e. maintaining physical autonomy and participating in social activities) is driving the therapeutic approaches to COPD. This patient-centric vision permeates all the lung disease research funded by the Division.
5. Why did you take on the leadership role in convening federal partners and then the broader community for the creation of the COPD National Action Plan?
In the fall of 2014 Congress asked the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create a national federal action plan for COPD. Within NIH, the Division of Lung Diseases at NHLBI was the natural place to start developing the plan as it is the largest funder of COPD research at NIH. The Division had a long-standing effort of bringing awareness of the disease to the American people through the Learn More Breathe BetterSM program and had already started interacting with other federal agencies in the two previous years, the request from Congress accelerated that trajectory. In addition, it was agreed among federal partners that the broader community of stakeholders should be participating in the crafting of the plan, which led to a concerted effort of all COPD stakeholders in contributing to developing and releasing the first COPD National Action Plan (CNAP) during the ATS 2017 International Conference.
6. What do you consider the most important contribution of the COPD National Action Plan so far?
The CNAP was able to glue together all the parallel efforts both public and private, federal and non-federal, that were ongoing in COPD. The CNAP constitutes the first blueprint that all stakeholders can refer to and use as a guide in assessing how collectively we can change the trajectory of the disease and address shared priorities from the viewpoint of each person affected by COPD. It is also our basic metric against which we can measure progress, and move swiftly to change route when necessary.
7. What do you think are the most important actions the community can take to advance towards achieving the goals of the COPD National Action Plan?
Coordination of everybody’s efforts as guided by the CNAP is the most effective way to advance our path toward reaching its goals. The CNAP should also be used to avoid duplicative efforts and maximize each stakeholder’s contribution to create a united front that can change the course of the disease.
8. The Learn More Breathe BetterSM program recently announced they will transition to a broader focus on lung disease. What does that mean for COPD?
The expansion of the Learn More Breathe BetterSM program represents a testimonial to the success of the program, where now maintaining lung health at any age takes center stage. It is through these expanded efforts that current and future generations can be sensitized to the risk of exposures that may damage the lungs (for example up to 25% of people with COPD never smoked cigarettes). This expansion is also consistent with the most updated definitions of COPD (for example, persons with symptoms but normal lung function) that cast a wider net to detect persons with early stages of lung disease.
9. What do you want the patient and caregiver community to know about the NHLBI, the people behind your work and your hope for the future?
The staff of the Division of Lung Diseases and of NHLBI is driven by the need to improve the lives of patients with lung diseases and their caregivers. We believe that continuing to pursue the five areas mentioned above and fostering their development and application in every aspect of research will ultimately change diagnostic, prognostic and treatment paradigms for people with COPD at all stages of the disease.