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Breathing in America Aims to Increase Public Awareness of Lung Disease

Lung disease is the third-leading killer in the United States and around the world, yet many lung diseases are under-recognized and research is grossly underfunded. However, a new book, Breathing in America: Diseases, Progress, and Hope, produced by the American Thoracic Society, shines a strong light on lung disease and research, exploring the nature and causes of pulmonary, critical care and sleep disorders, their prevalence and burden, the benefits research has brought and the research challenges that remain.

Breathing in America, which was supported by the National Heart, Lung, and Blood Institute, is definitive resource for healthcare workers who need to have a succinct source of information about these diseases, as well as for patients and their loved ones, who will find in-depth information as well as well-documented sources for further reading.

"It is a compilation of basic facts, including epidemiologic data, about lung disease in America and it describes the role that research must play in advancing its prevention, treatment and management,"

said ATS president Dean Schraufnagel, MD, who edited the book.

In addition to sections on pathology, prevalence and the current state of research, each chapter includes a patient perspective that describes the realities of living with pulmonary disease. IT includes well-known diseases such as asthma and COPD as well as lesser-known diseases such as sarcoidosis and pulmonary hypertension. There is also a section on rare lung diseases, which covers diseases such as lymphangioleiomyomatosis and Hermansky-Pudlak syndrome.

The book was envisioned as a tool to educate healthcare providers, policymakers and the public about the significant burden of respiratory diseases, and the importance of promoting research, education and training.

"Breathing in America creates a single go-to source with a clear and concise summary of the lungs and what they do, the burden of lung diseases on this country and illustrative advances of what can be done for those with respiratory diseases,"

said James Kiley, PhD, director of the NHLBI's Division of Lung Diseases.

"It explains what more research would do to enable early diagnosis, more targeted interventions and prevention of disease."

Calling it an "important step" toward a broader campaign to inform our political, civic and business leaders, at-risk patients and the general public that lung disease represents a significant threat to the nation's health, former ATS president Jo Rae Wright, PhD, noted that a central theme of the book is that "our collective response has fallen short, but that there is an answer - research - that will help save many lives and greatly improve the quality of many others."

The online version is available for free on the ATS Web site at www.thoracic.org/education/breathing-in-america.

Interview with Dean E Schraufnagel, MD

- immediate-past president of the American Thoracic Society, professor of medicine and pathology at the University of Illinois at Chicago, and editor of Breathing in America: Diseases, Progress, and Hope

Q. Dr Schraufnagel, why did the American Thoracic Society publish this book?

A. The American Thoracic Society wanted to tell people how lung disease affects us, about the great advances being made in controlling and curing lung disease and what more needs to be done. Diseases of the lung and of breathing are greatly under-recognized. COPD, or chronic obstructive pulmonary disease, for instance, is the fourth-leading killer of Americans, but many have not even heard of it. It is also on the rise, unlike the other leading causes of death, which are declining. The American Thoracic Society and its 15,000 members are dedicated to eradicating diseases like COPD, asthma, cystic fibrosis, pneumonia, acute respiratory distress syndrome, lung cancer, sleep apnea - all of which are covered in the book.

Q. It's surprising to think that COPD, a disease many people haven't heard of, could be the fourth-leading killer of Americans. What other statistics stand out about respiratory disease?

A. There are many: More than 160,000 people die of lung cancer each year - more than breast, colon, prostate, and pancreatic cancer combined. The nation's annual health bill for providing care for respiratory disease - excluding lung cancer - is $113 billion. Sleep-disordered breathing, a condition that was rarely diagnosed until a couple decades ago, is now estimated to affect 10 percent of all Americans. There are also many exciting positive facts: Over the last two decades, the longevity of a person with cystic fibrosis increased from 10 years to 35 years. Infant mortality from respiratory distress syndrome has declined from 25,000 deaths in the 1960s to 860 deaths by 2005, to name a few. The format of each chapter is similar: a brief description of the disease, information about who gets the disease and how it affects them, what research has taught us so far about the disease and an honest appraisal of the challenges ahead.

Q. The book is very readable. How did you manage to get research and clinical experts to write so plainly?

A. Believe it or not, the authors made it easy. We told them this was not a textbook, and they responded by writing for the readers we are hoping to reach. I think we all feel passionately about this issue, so we worked hard to produce clear, concise and engaging language. It is a topic dear to our lungs! At the same time, medical and scientific accuracy was paramount. I am pleased to say that the National Heart, Lung, and Blood Institute supported this effort, and several of its scientists, as well as epidemiological experts at the Centers for Disease Control and Prevention, were involved in writing or reviewing the book's contents.

Q. How can patients and their families use this book?

A. Patients and their families will find this book to be a valuable resource. Breathing in America is written for a non-physician audience interested in respiratory disease.

The information in each chapter represents the most up-to-date information on each disease, and will not only help patients understand their own disease, it will help them communicate knowledgeably with health professionals. The references and Web sites of interest sections will point them to additional resources where they can obtain more information.

Family members and advocates will appreciate the case studies that tell the real story of what it is like to have these diseases. Many case studies in the book demonstrate how often the disease is missed or misdiagnosed. Others emphasize that with proper treatment, patients can live a healthy, normal life. Unfortunately, other cases have sad endings because we simply do not have an effective drug or therapy, highlighting the need for more research.