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Volume 6, Issue 1
Quarter 1 2012
 

National Conference Energizes COPD Community, Eyes Future Progress

Courtesy of the U.S. COPD Coalition

The Second National COPD Conference was held on December 2-3, 2011, in conjunction with COPD7USA, a Continuing Medical Education conference for health care professionals. The Second National COPD Conference was designed to bring together individuals with chronic obstructive pulmonary disease (COPD), health care professionals, government agencies, and advocacy organizations to collectively engage in planning a path to move COPD efforts forward. The First National COPD Conference, held in 2003, spurred nearly a decade of progress in COPD awareness, diagnosis and treatment, research, and education efforts.

The Second National COPD Conference sought to achieve four goals: assess the progress that has been made since the first conference; produce a series of new recommendations based on the gaps that still remain; organize collaborative action teams to address the identified gaps; and provide patient organizations, state coalitions, public health professionals, and clinical leaders with the tools to take action in their local communities.

From left to right: James P. Kiley, Ph.D., director of lung diseases, National Heart, Lung, and Blood Institute; Byron Thomashow, M.D., clinical professor of medicine at Columbia University; Sam Giordano, executive director & CEO, American Association for Respiratory Care; Robert Senior, M.D., Washington University School of Medicine

From left to right: James P. Kiley, Ph.D., director of lung diseases, National Heart, Lung, and Blood Institute; Byron Thomashow, M.D., clinical professor of medicine at Columbia University; Sam Giordano, executive director & CEO, American Association for Respiratory Care; Robert Senior, M.D., Washington University School of Medicine

The conference tackled topics including progress in patient outcomes, achievements of state COPD coalitions and public policy progress. U.S. Senator Mike Crapo, co-chair of the Congressional COPD Caucus, addressed conference participants and encouraged them to participate in COPD advocacy while pledging to continue his work of organizing his colleagues to join the Congressional COPD Caucus. Other notable speakers included: James Kiley, Ph.D., of the National Heart, Lung, and Blood Institute; Byron Thomashow, M.D., of Columbia University; and Grace Anne Dorney Koppel, COPD patient advocate.

Plenary sessions and workshops helped facilitate further discussion among attendees, allowing COPD patients and others from across the country to discuss the daily challenges of COPD, smoking cessation, spirometry testing, advocacy strategies, and more. Thanks to the support of the COPD Learn More Breathe Better® campaign, Breathe Better Network members were able to attend and share their experiences, learn new strategies to assist with implementing COPD education and awareness programs, and meet other Network members.

This diverse community came together on the final day of the conference to put forth recommendations for the U.S. COPD Coalition and its partner organizations to use as a guide for action in the coming years. The U.S. COPD Coalition will release a complete list of recommendations via webinar, in conjunction with the COPD Learn More Breathe Better campaign. When the Coalition meets again at its semi-annual business meeting in May, action teams will be formed to ensure conference insights drive the next decade of progress around COPD. For more information regarding participation and the action teams, contact the U.S. COPD Coalitionimage of external icon!

 

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An NHLBI COPD Research Update: Study of a rare disease may offer clues on COPD

Antonello Punturieri, M.D., Ph.D., NHLBI Division of Lung Diseases

Antonello Punturieri, M.D., Ph.D., NHLBI Division of Lung Diseases

by Antonello Punturieri, M.D., Ph.D., NHLBI Division of Lung Diseases

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), is the Institute with primary responsibility for research on COPD. The many and diverse research activities funded by the Institute are conducted at universities and medical centers across the country.

COPD is a complex disease where multiple instances determine its development and progression, among these the genetic material we are all made of (DNA) and the environment. What DNA individuals carry along and how a particular individual's DNA interacts with the environment, for example with cigarette smoke and other exposures, ultimately determines susceptibility to develop COPD. The same factors may direct the clinical course of the disease, slow in some, faster in others.

A specific DNA variation that leads to the defective production by the body of a protein called alpha 1 antitrypsin (alpha 1 antitrypsin deficiency or AAT) makes individuals more susceptible to the development of COPD. AAT is rare, affecting about 1-3% of patients with diagnosed COPD. AAT is most common in the Caucasian population, occurring in about one in 3,000-5,000 individuals in the U.S., and is present at lower frequencies in all racial subgroups worldwide. It is important to recognize that the development and progression of COPD in AAT individuals varies, and many may not be substantially impaired by the deficiency.

Why in some individuals AAT leads to COPD and in other does not, is the subject of a NHLBI-funded program called Genomic Research in Alpha 1 antitrypsin Deficiency and Sarcoidosis (GRADS). GRADS will use state-of-the-art molecular approaches in combination with patients' clinical characteristics to improve disease classification, facilitate biomarkers development, and accelerate the discovery of key pathways and targets for therapy.

GRADS is designed to assure close cooperative efforts among several clinical centers and a genomics and informatics center. The clinical centers will recruit participants, perform participants' clinical characterization, and collect biospecimens. The genomics and coordinating center is charged with the molecular and integrative analyses of these data with the clinical phenotypes. The particular structure of GRADS will also allow for the study of patients that suffer from sarcoidosis, another rare disease, not related to AAT, but that also presents with variable manifestations. Results from GRADS are expected to generate novel hypotheses regarding the pathogenesis of lung diseases in these conditions and may offer clues on factors that influence the development and progression of non AAT-related COPD.

Additional information about AAT deficiency is available from NHLBI at:
http://www.nhlbi.nih.gov/health/health-topics/topics/aat/

Additional information about sarcoidosis is available from NHLBI at:
http://www.nhlbi.nih.gov/health/health-topics/topics/sarc/

 

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Spotlight On...Vicky Shrader, Hanover Hospital Lung & Sleep Center

Vicky Shrader, RRT, CPFT, Hanover Hospital Lung and Sleep Center

Vicky Shrader, RRT, CPFT, Hanover Hospital Lung & Sleep Center

As a respiratory therapist, Vicky Shrader has spent more than 25 years passionately caring for her patients. While her initial career-focus was asthma — a disease that affects her personally — in 1999, with leadership from Hanover Hospitalimage of external icon's medical director, Shrader helped to establish the Hanover Coalition for Lung Health.

For Shrader, the impact of providing asthma education and treatment had an immediate positive effect; yet she was astounded by how far COPD could progress without a patient thinking something was wrong. According to Shrader, "There was little being done about COPD and the stigma associated with the disease put it in the shadows." The Hanover Coalition for Lung Health was created to enhance COPD education and continue the work that began with Dr. Tom Petty's "Test your lungs, know your numbers" initiative at the National Lung Health Education Program (NLHEP). Having accomplished a great deal in terms of COPD education since 1999, some of the Coalition's achievements included helping Hanover residents "know their number," educating local physicians on performing spirometry testing, and assisting with equipment calibration.

The Coalition has since disbanded but still lives on through Shrader's work. Under Shrader's direction, Hanover Hospital hosts an annual Lung Health Day in November to coincide with World COPD Day, facilitates Medical Grand Rounds sessions, and conducts case-finding spirometry events at various venues such as health fairs and business expos.

Shrader remains committed to raising awareness on COPD. She says that while progress has been made in the fight against COPD, there is more work to be done. "COPD has become the 3rd leading cause of death in the United States and is the only one of the top five that is still on the rise. I would like to see the COPD mortality curve reversed in my lifetime." Under her leadership, Hanover Hospital continues its commitment to earlier diagnosis and treatment of COPD and recently joined the COPD Learn More Breathe Better campaign's Breathe Better Network.

 

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Breathe Better Network Update

COPD Learn More Breath Better Network

In October of 2009, the COPD Learn More Breathe Better campaign formalized its partnership network and launched the Breathe Better Network. Since then, Network members have been steadily at work spreading awareness about COPD and in doing so, have expanded the Campaign's reach to 47 states and the District of Columbia. The Network continues to grow and recently added three new organizations to its ranks:

American Lung Association of the Midland Statesimage of external icon
The American Lung Association of the Midland States serves a four-state region, which includes Kentucky, Michigan, Ohio and Tennessee. The Midland States chapter of the Lung Association is actively engaged in initiatives around COPD, tobacco, clean air and indoor air quality. To date, chapters in this region (Kentucky and Tennessee) have assisted with two of the COPD Learn More Breathe Better campaign's Country Conquers COPD™ events.

American Lung Association of the Mid-Atlanticimage of external icon
The American Lung Association of the Mid-Atlantic serves a four-state region, which includes Delaware, New Jersey, Pennsylvania and West Virginia. The Mid-Atlantic chapter has promoted awareness of the signs and symptoms of COPD at more than 40 COPD-related events throughout the region over the past year. In addition, the chapter manages nearly 20 separate Better Breathers Clubs within the four states.

Hanover Hospitalimage of external icon
Hanover Hospital is a nonprofit community hospital dedicated to the promotion of wellness, preservation of health, and the provision of diagnostic and therapeutic services to the people of the Greater Hanover Area. Hanover Hospital offers an American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR)image of external icon accredited Pulmonary Rehab program, which has earned national recognition as a state-of-the-art, "model" hospital program. Pulmonary Rehab services at the hospital focus on maintaining lung health through exercise and education. The hospital also regularly attends local events in the community to increase awareness of the signs and symptoms of COPD, and conduct spirometry testing.

Please join the COPD Learn More Breathe Better campaign in welcoming these new Breathe Better Network members! If you know of a group or organization that might be a strong addition to the Network, please let us know by sending an email to NHLBIinfo@nhlbi.nih.gov.

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We Want to Hear From You!

If there is an outstanding member of your team that you want to recognize, or if your organization is working on a project that you think should be included in the next COPD Learn More Breathe Better Update, we want to hear from you. Email us at NHLBIinfo@nhlbi.nih.gov and let us know what you're doing to raise COPD awareness.

And, if you weren't aware, the Campaign also has an updated Facebook pageimage of external icon where you can see new activity including videos from Breathe Better Network activity during National COPD Awareness Month. Check it out and become a fan of the Campaign's page.

That's not all! You can follow the Campaign @BreatheBetterimage of external icon on Twitter and join the conversation.