A COPD Awareness Month Q&A With The COPD Foundation

Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in the United States, and for COPD Awareness Month this November, The American Journal of Managed Care^® (AJMC^®) conducted a Q&A with Jamie Sullivan, MPH, vice president of public policy and outcomes for The COPD Foundation, as well as Chief Medical Officer Byron M. Thomashow, MD. The COPD Foundation is a not-for-profit organization that works to improve the lives of patients with COPD.

AJMC^®: It’s been about a year and a half since the launch of the COPD National Action Plan. How do you see it being implemented, or not?

Sulllivan: The National Action Plan laid out a framework for action in COPD that helps to guide efforts of groups like ours, the federal government, state governments, healthcare institutions, payers, pharma, patients, and healthcare professionals. In one sense we have made progress in implementing the National Action Plan in that many groups have used it to help align their efforts with the goals within the plan. There have also been a few new efforts started as a result of the Plan. For example, the National Heart, Lung and Blood Institute (NHLBI) and the Federal Office of Rural Health Policy have taken on a leadership role in addressing COPD in rural areas where we know the impact is worse. A rural summit was held and a follow-up working group was formed to advance specific actions in rural areas. The Plan helped organize these conversations, and its existence allowed a much broader segment of the community to join the conversation on COPD, which is critical to making significant progress in awareness, diagnosis, quality, and access to care in particular.

Of course, we wish there was more being done to implement the Plan. Most notably, to make significant gains in implementing some of the goals of the Plan, major policy actions are required and these have not yet occurred. For example, we would like to see more activity across the federal government, in particular, dedicated funding for the CDC to address COPD, action by CMS to address the oxygen access crisis and the low reimbursements for pulmonary rehabilitation, and greater investments in critical COPD research. We have made progress but still have a ways to go to get these issues and others across the finish line.

The NHLBI has been a great champion within the federal government and are doing everything within their power to keep the Plan alive and coordinate efforts to move forward but they need everyone to do their part and they need policy change for us to fully realize the potential of the Plan to alter the course of COPD in the United States.

AJMC^®: What are some public health success stories that you’ve collected from the field over the past year?

Sullivan: Unfortunately, there is not a lot to report here, but not all of the news is bad. The major obstacle in creating public health interventions to COPD is that the CDC has never had a single dollar appropriated to address COPD. Of course, they address prevention via their Office on Smoking and Health; ensuring that more and more people are able to quit tobacco or never start in the first place is of great importance to halting the development of future COPD. However, we need to do more in public health to address the effects of COPD, as we do with other chronic conditions. The fact is 25% of people with COPD haven’t smoked, the majority of people with COPD have already quit, and it’s a complicated relationship of exposures to tobacco, pollutants, chemicals, early childhood experiences, occupational settings, and genetics that determine someone’s risk for COPD.

With that said, one success story to highlight is how the addition of COPD to the Hospital Readmission Reduction Program has spurred many hospitals to go outside of their traditional healthcare boundaries and provide patients with COPD some of the benefits we would traditionally associate with more public health focused initiatives. We have seen hospitals employ community health workers and respiratory educators like nurses and respiratory therapists to provide education and support in the home and by phone with varying degrees of success in improving quality of life and rehospitalizations, depending on how the program is implemented and the community that they are serving.

There has been a growing interest in what can be done about COPD within the public health community, and that alone is a small victory for now. The data coming from the Behavioral Risk Factor Surveillance System and the National Action Plan has catalyzed more interest from state health departments. One that stands out is Kentucky, which leads a state task force on COPD that is currently drafting an action plan for the state and meets regularly via conference call to share resources and news across the state.

The NHLBI has also recently provided funding to 6 organizations through their Learn More Breathe Better Campaign. The projects will be conducted through April 2019 and all involve public health interventions at some level. We are working on a train-the-trainer approach for improving COPD outcomes in rural Tennessee.

One other effort to note, we recently released the COPD in the United States initiative which took available data from public health surveillance tools at the state level and aggregated it to look at the overall impact of COPD across the states and provide data and resources for public health decision makers and advocates to act on. Besides the paper, we also have individual state fact sheets.

AJMC^®: What are some unmet clinical needs?

Sullivan: Pulmonary rehab, oxygen, inhaled medications, appropriate education and support are all big gaps for us to address. Only a small fraction of patients who are eligible for pulmonary rehabilitation actually participate, either due to not getting a referral, not having a facility near them or other personal factors like willingness to participate and cost. Pulmonary rehabilitation changes lives as we see every day on www.copd360social.org.

Oxygen is a life-saving therapy for COPD patients but over the last decade we have seen a growing access issue. The access issues start as a clinical gap, meaning that oxygen is not often prescribed with the patient’s full mobility and saturation needs in mind. What results is a generic prescription that when combined with greatly decreased reimbursement rates, has resulted in patients getting the cheapest, least portable equipment available. Patients are often tied to their houses with stationary concentrators and few portable tanks. Those who are able to meet their clinical needs with a portable oxygen concentrator often don’t know they can get one or can’t afford the out-of-pocket costs associated. If they do get one, they don’t understand how to use them. Those with high flow needs have been most hurt, as the more expensive liquid oxygen has been disappearing from the market. Liquid oxygen allows people on higher flows to use portable equipment that will last for more hours, giving them the freedom to leave their houses and stay active, an important part of treatment for COPD.

We also know people with COPD, especially those in rural areas, don’t often have access to a pulmonologist, many are not optimally treated and those that are often struggle to access the full range of medications that work best for them. Increasingly, people with COPD are finding that the inhaled medications they have been taking are no longer included as part of their plan’s formularly leaving them to navigate how to use a new device that may not work the same. As we learn more about what treatments work best for different types of COPD, this access will be an even bigger issue to tackle. One of the ways the Foundation is addressing known clinical gaps is by simplifying the delivery of tools and information for clinicians and patients. We recently released a new app for Apple and Android phones, the COPD Pocket Consultant Guide, that provides guidance on treatment considerations and includes resources like inhaler instruction videos that can be used in the clinic.

AJMC^®: What can be done to encourage an early diagnosis?

Sullivan: Many of the early signs and symptoms of COPD are mistaken for normal signs of aging, being out of shape, or the effects of nagging respiratory infections and colds. People also self-treat these early signs by adapting their activity levels, slowing down, climbing fewer stairs, and taking over-the-counter medications. Often these early symptoms are not raised in regular medical encounters and the questions are not asked that get at identifying the symptoms so that proper screening can be initiated.

Greater public awareness that encourages people to report early signs and symptoms of COPD is one big step, but we need better ways to find COPD earlier in primary care settings. A major effort called CAPTURE is under way to validate a new process of screening for COPD that uses a questionnaire to identify people at risk and then utilizes electronic peak flow. A full validation study is under way and there is great hope that this tool can support earlier diagnosis especially in primary care.

AJMC^®: Where are other gaps?

Sullivan: Much has already been mentioned in the above answers. I would reference the National Action Plan for other ideas on high priority COPD strategies but, ultimately, we have a lot of work to do. We can work to reduce risk factors for COPD, increase awareness of early signs and symptoms, do better diagnosing COPD early and accurately, and ensure people with COPD get the best treatments that we have now. Meanwhile, we have to strive to develop better treatments and we can do much better to ensure people with COPD are given the appropriate education and support that helps them live with the disease, rather than feel alone and hopeless as many do.

AJMC^®: Is there anything you are particularly looking forward to in 2019 in COPD research news?

Thomashow: We are hopeful that the [National Institutes of Health] will make steps to initiate a Lung Health Cohort study that will focus on what factors protect young adults from environmental risk factors such as pollution and cigarette smoking. In addition, we hope that some of the output from the COPD Gene study may help us identify a broader group and additional phenotypes and endotypes of COPD. We also look forward to expanding the criteria and tools used to diagnosis and confirm COPD beyond spirometry and determining whether there is more about the role of peak inspiratory flow in selecting proper inhalers for our patients.