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We hope you were able to join us for our March 2019 Research 101 webinar. We are pleased to offer you the full recording from this event here. The recording is free and can be accessed at any time.

During the 50-minute webinar, Dr. Yawn and Dr. Mularski gave an overview of research, the different types of research, questions to ask before participating in research, as well as a breakdown of clinical terms and “big words” associated with various types of studies. They were joined by Pam DeNardo, a patient partner, who discussed her experience with research along with her participation in the COPD Patient-Powered Research Network.

More about your expert speakers

Dr. Barbara Yawn, MD, MSc is a long-time clinical researcher studying how to improve respiratory care in rural and primary care settings. She is currently the Chief Science Officer of the COPD Foundation and co-PI of the COPD Patient Powered Research Network.

Dr. Mularski, MD, MSHS, MCR, leads health services research in the areas of obstructive lung disease, palliative care, and delivery science at the Kaiser Permanente Center for Health Research in Portland Oregon; he is also a Clinical Professor of Medicine and Senior Scholar of Ethics at Oregon Health & Science University. He practices pulmonary and critical care medicine as a Senior Physician for Northwest Permanente where he also serves as Regional Clinical Quality Lead for COPD and is the Director of Research and Evaluation for the northwest KP region. He is a founding steering committee member of CONCERT and co-PI of the COPD Patient Powered Research Network.

Pam DeNardo is a COPD patient of 20 years and an advocate with the COPD Foundation in many positions since its inception. Along with Bill Clark and John Walsh, she started the COPD Foundation's Information Line in 2007. And like many here, she is a firm believer in the importance of research but also its misunderstandings among the patient population.

The COPD Foundation would like to thank Dr. Yawn, Dr. Mularski and Pam DeNardo for their participation in the Research 101 webinar. Stay tuned for information on upcoming events!

This blog post was written by Amy Leitman, Director of Policy & Advocacy

As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to your life, as you help your loved one with treatments and the challenges of a changed lifestyle. Chronic illness often makes people feel like they have lost control, or that they are overwhelmed by the enormity of this undertaking. These feelings are normal, and neither caregiver nor patient should push them aside or disregard them. It helps for both of you to know as much as possible about the illness and treatments, so you can make decisions together.

It's important to address the emotional and physical issues you face, because each patient needs a strong support system, as does the caregiver, to be a strong support to the patient.

From specialists to primary care physicians to pharmacists and therapists, health care providers are often a valuable source of information needed to help with the ongoing long-term regimen needed to treat NTM lung disease, pseudomonas, bronchiectasis, and other related diseases. Caregivers, listen to your instincts and to your loved one as well. Listen and observe for anything out of the ordinary in case it needs to be reported to the doctor.

The BRONCHIECTASIS & NTM INITIATIVE NTM INFO & RESEARCH and the COPD FOUNDATION websites have several resources available to help patients, caregivers, and loved ones, and we encourage you to use them. Each of these websites have online forums where community members connect and interact.

We are looking for 1 additional (male) pulmonary MAC patient advisor for Kevin Winthrop’s PCORI-funded MAC2v3 pragmatic trial!

This is a remote advisor position, no travel for in-person meetings. Note that while this is a 5-year project, a full 5-year commitment to participate is not required. We have 4 patient advisors already identified, and are looking for 1 more to round out the panel.

This study is titled Comparison of two- versus three-antibiotic therapy for pulmonary Mycobacterium avium complex disease (“MAC2v3”). We will prospectively follow patients newly diagnosed with NTM who are randomized to either a 2-drug or 3-drug treatment regimen. Our objective is to determine whether or not a 2-drug treatment regimen is better tolerated and as effective (based on culture analysis) as a 3-drug regimen.

This blog post was written by Jane Martin, BA, LRT, CRT

If you have Bronchiectasis/NTM, you well know that the effects of this disease can result in major changes to your lifestyle and activities. And these changes, and challenges, are bound to cause stress. Looking at common causes of stress (stressors), coping skills and techniques, and how to use a stress log for managing stress brought on by Bronchiectasis/NTM are valuable ways to improve daily life.

Let’s start by looking at some stressors commonly found with Bronchiectasis/NTM. You may have one or more of these, and you may have others that are not on this list.

• Eating issues and digestive problems
• Body image issues with low weight
• Uncontrollable cough leading to embarrassment and/or social isolation
• Side effects of strong, frequently-used antibiotics
• Gastro-esophageal reflux disease (GERD)
• Fatigue or Exhaustion
• Cancelling plans due to not feeling well

So, what does it take to get through this stress? It is important to note that what works for one person may not work for another. Here are some examples of coping skills and techniques that may be helpful.

This blog post was written by Katie Keating, RN, MS, patient advocate

Exacerbations and flare-ups are a part of life for many bronchiectasis and/or NTM patients. A flare-up is when your everyday symptoms worsen; such as on humid or rainy days. Exacerbations, however, last longer and are more serious. They usually happen when a respiratory infection causes inflammation, excessive mucus, fever, increasing cough, shortness of breath, or reduced lung capacity, as noted on pulmonary function tests.

Unlike flare-ups, exacerbations can have permanent effects. Some patients’ conditions may never get back to where they were before the exacerbation. This often is the case following a pseudomonas infection.

As a patient and a nurse, I made light of my exacerbations in the past, just figuring that another round of antibiotics was part of the journey. Little did I realize the impact long-term antibiotics would have on my gastrointestinal and genitourinary tracts. I now take a more proactive approach to prevent any possible infection from invading my body and avoid antibiotics as much as I can.

Winter weather causes an increase in symptoms because cold air is denser, drier, and more difficult to breathe. Airways and nasal passages may be dry, causing inflammation that worsens symptoms, increases mucus production, and increases your risk of illness or infection. In cold weather especially, individuals at risk of infection should try to do everything possible to keep your body strong and prevent acute exacerbations.

This blog post was written by Beth McKnight, Patient Advocate, with the help of a Patient Advisory Panel.

Researchers at Oregon Health and Science University have found that long-term treatment of respiratory diseases with inhaled corticosteroid drugs actually increases the risk of serious lung infections.

The study, presented at the 2018 American Thoracic Society International Conference, focused on adult patients with bronchiectasis, whose bronchial tubes are thickened from inflammation and infection, preventing the clearing of mucus. Bronchiectasis, most accurately diagnosed by a CT scan, is on the rise in the U.S.

Dr. Emily Henkle, presenting author, said the team found that inhaled corticosteroid use increased the risk of hospitalized infections, and no evidence exists that they prevent exacerbations or progression of the disease. The study examined Medicare data from 90,000 patients who used either inhaled corticosteroids or the oral antibiotics azithromycin and erythromycin. The study found an increased 39% risk in the corticosteroid group as compared the group taking the oral antibiotics.

However, Dr. Henkle cautioned, potential risks exists with taking just one antibiotic long-term, such as the development of antibiotic resistant bacterial lung diseases like Mycobacterium aviumcomplex (MAC or MAI) and other nontuberculous mycobacterial infections.

What does this mean for physicians who treat patients with bronchiectasis and other lung diseases?

Chronic illness affects every aspect of a patient’s life. Research and new therapies are essential to improve the health and well being of those affected with chronic illnesses.

Georgetown University and MedStar Health recently held patient sessions at the World Bronchiectasis Conference this past July. Experts in the field were brought together to discuss the newest research focusing on bronchiectasis and nontuberculous mycobacterial lung infections.

If you were unable to attend, we now have the recordings available from the 6 sessions geared toward patients.

• Overview of Bronchiectasis and NTM Pamela McShane, MD
• Why Do I Need Airway Clearance and Rehab? M. Leigh Anne Daniels, MD, MPH
• What Can I Do About My Environment? Anne E. O’Donnell, MD
• I Have NTM Infection (MAC/M.Abscessus): What are My Options? Julie Philley, MD
• I Have Pseudomonas Infection: What Are My Options? Gregory Tino, MD
• Panel Discussion

Topics Include

• Finding physician expertise in my community
• Pulmonary and ID interaction
• Nutrition
• Dealing with the laboratory
• Obtaining appropriate medications

If you were able to join, please let us know what you found most valuable as a patient or what you wished to have learned more about. You can post your responses on BRONCHANDNTM360SOCIAL or email us at INFO@BRONCHIECTASISANDNTMINITIATIVE.ORG.

As you know currently there are no FDA-approved treatments specifically for nontuberculous mycobacterial (NTM) lung disease caused by MAC. Yesterday, the Antimicrobial Drugs Advisory Committee of the U.S. Food & Drug Administration met to assess a newly proposed treatment, Arikayce (Inhaled Liposomal Amikacin) for NTM lung disease caused by Mycobacterium avium complex (MAC).

During the meeting, the Advisory Committee heard presentations from Insmed, the company who developed the treatment, the FDA staff who reviews and analyzes data from the treatment’s clinical trials and from the public. Remarkably, 12 community members traveled to the FDA to tell their stories, each having been allotted 5 minutes during the open public hearing session. The physicians, patients, family members and representatives from the COPD Foundation and our partner, NTMir, spoke of the urgent need for new treatment options that are more effective and less toxic. They explained how NTM has changed their life and what it meant to them to have a better chance at achieving culture conversion, the main benefit of the proposed new treatment.

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Mary Kitlowski, a member of BronchandNTM360social and COPD360social is in search of individuals who use supplemental oxygen (or a friend or family member who does) to share their stories. In childhood Mary was diagnosed with a rare genetic disorder called Primary Ciliary Dyskinesia (PCD) and later Bronchiectasis. She’s always had a passion for running and created an organization called Running on Air http://www.runningonair.net/virtual-racesthat seeks to advance awareness of lung diseases and other rare illnesses, to raise funds for organizations that seek to raise the same awareness and to inspire anyone who suffers with a disability to continue to exercise and live a healthy existence no matter the condition.

For much of the month of August, Mary hopes to share a story a day about individuals who use supplemental oxygen. She also plans to create a supplemental oxygen fact sheet. If you or someone you know would like to share your story and lend your voice to raising awareness on supplemental oxygen, please send your story and photo(s) to: Mary.RunningOnAir@verizon.net by August 10, 2018.The stories and photos will be highlighted on Running on Air’s Facebook page.

The story should include:

• 1-3 paragraphs
• Why is the individual on oxygen?
• What has changed due to the supplemental oxygen?
• Have any obstacles been overcome due to the oxygen therapy?
• Since beginning supplemental oxygen, what can the individual no longer do?
• Anything else that may be relevant to the story
• A photo with the supplemental oxygen, if possible

Thank you for considering a contribution to this important endeavor. An unknown author said, “One voice can make a difference. A million can change the world.” We have to begin somewhere.

The U.S. Food & Drug Administration (FDA) has posted a Federal Register Notice announcing the upcoming Anti-Microbial Advisory Committee Meeting for Insmed’s inhaled liposomal amikacin. The committee will discuss new drug application (NDA) 207356, amikacin liposome inhalation suspension, sponsored by Insmed, Inc., for the proposed indication of treatment of nontuberculous mycobacterial lung disease caused by Mycobacterium avium complex in adults as part of a combination antibacterial drug regimen.

The meeting will take place on August 7, 2018 in the Great Room at the FDA’s White Oak campus (10903 New Hampshire Avenue, Silver Spring, MD).

If you are a patient with MAC lung disease who either did or did not participate in the Insmed clinical trial, and you wish to address the committee during the Open Public Hearing session of the meeting that day, please contact Amy or Susan at ntmmail@ntminfo.org. Please note that the deadline to register as a speaker for the FDA meeting is July 16^th, so anyone who is interested should contact them as soon as possible. Compensation will be offered for travel expenses.

It would be most helpful to have two or three patients speak before the committee for 3 to 5 minutes each, addressing the severe unmet need you have as a patient, and how this drug can benefit you. If you participated in the trial, you should also discuss how it helped you, and how it would be beneficial to you to have this drug approved so they can take it.

For those unable to attend the meeting in person or who will not be speaking at the meeting, the FDA offers the opportunity to submit written comments to the docket, no later than July 24, 2018. Statements submitted are public; those submitted before the deadline are printed out and given to committee members with their briefing materials. Comments can be submitted via this link: https://www.regulations.gov/document?D=FDA-2018-N-2490-0001. Just click on the Comment Now! button.