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This blog post was authored by Lucinda Shore and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

As bronchiectasis and nontuberculous mycobacterial (NTM) lung disease become more common in the U.S., getting a quick, accurate diagnosis and expert care is very important. To help meet this need, the Bronchiectasis and NTM Association created the Bronchiectasis and NTM Care Center Network (CCN).

The CCN connects people to medical centers throughout the U.S. that provide expert care and treatment, high-quality education, advice, and support for those living with bronchiectasis and NTM lung disease. The CCN gives sites one of two designations:

• Care Center: These centers offer a clinical research program, treat hundreds of people with bronchiectasis and NTM, and provide direct access to specialists (like dietitians or psychologists) for immediate care.
• Clinical Associate Center (CAC): CACs provide high-quality, expert care, but may see fewer people with both conditions, may be less involved in research, and may not have access to specialists within the center.

This post was co-authored by the Bronchiectasis and NTM Association and COPD Foundation Education teams.

What is Bronchiectasis?

Bronchiectasis is a chronic (long-lasting) lung disease that causes the bronchial airways – the tubes that carry air in and out of the lungs – to become widened, scarred, and inflamed.¹

Bronchiectasis can affect anyone. It is often seen with other lung conditions such as COPD, severe asthma, history of lung infections, and immunodeficiency.

Immunodeficiency is when the body is unable to fight germs and infections properly. In up to 50% of cases, bronchiectasis is caused from unknown reasons.¹ To learn more, download the “All About Bronchiectasis” booklet.

How the Disease Works

Damaged airways can lead to a buildup of mucus. This causes increased cough. Mucus in the lungs creates an environment that encourages the growth of germs. These germs can contribute to recurring infections, increased inflammation, and further damage. This process is known as the vicious vortex.¹

This blog post was authored by Emily Henkle, PhD, MPH, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Hello BronchandNTM360social community!

We are sharing exciting news -- the MAC2v3 clinical trial led by Dr. Kevin Winthrop and team at Oregon Health & Science University completed enrollment in October 2024. This study is important to the NTM lung disease community as it is designed to test whether two drugs (azithromycin and ethambutol) are as helpful in treating MAC (a common type of NTM) as the “big three” (azithromycin, ethambutol, and rifampin) in producing a negative sputum culture. The researchers are also studying whether two drugs are easier to tolerate than three.

We surpassed our target enrollment of 466 participants with 474 entered into the study. We will be presenting preliminary data at the American Thoracic Society conference in May. However, the MAC2v3 study cannot report results until all the data is in. The study data collection will be complete in October 2025, and we plan to review the results by the end of the year.

We continue to meet with our study advisory committee and patient advisory panel to review data.

We are grateful to the patients, families, and our amazing network of 30+ physicians at 22 sites in North America, from Hawaii to New York to Texas to Toronto, Canada, that contributed to this study.

This blog post was authored by Alyssa Dittner, BS, RRT, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Ultra-processed foods (UPFs) are whole foods that have been heavily changed. UPFs often include added ingredients like preservatives, extra sugar, and food coloring.¹ These foods have become a large part of many people’s diets. They are convenient and have a long shelf life.¹ However, choosing UPFs can affect weight and overall health, leading to both underweight and overweight individuals experiencing malnutrition and hidden hunger.

Body mass index (BMI) is a way to estimate body fat by looking at a person’s height and weight.² One study found that for those with bronchiectasis, BMI alone doesn’t tell the whole story of their health.² Weight is only part of the picture when it comes to health. UPFs can negatively impact how often someone may become sick and affect strength and muscle mass.^3,4 Many people are concerned with being overweight; however, being underweight can also weaken the lungs and make it harder to fight off infections.²

Malnutrition can occur when the body doesn’t get enough vitamins and minerals, even if a person eats a normal amount of food as defined by the U.S. Department of Health and Human Services.⁵ Many people have diets high in calories from UPFs and feel full. However, they may have malnutrition and hidden hunger because they are consuming fewer vitamins and minerals than their bodies need.⁶

UPFs can include sugary drinks, packaged snacks, instant meals, and processed meats.¹ These foods are often high in sugar, unhealthy fats (like saturated and trans fats), and salt, but are low in important vitamins and minerals.¹ In the U.S., more than half of the average person’s diet comes from UPFs, and this amount increases each year.³

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Hidden Hunger: The Quiet Malnutrition

While UPFs often have plenty of calories, they lack important micronutrients. These are small amounts of vitamins and minerals in food that are important for the body to function properly.^7,8 Micronutrients include vitamin D, iron, magnesium, and zinc.^7,8 Diets low in micronutrients can lead to serious health problems and increased symptoms, including:^4,5

• A higher risk of infection.
• Low energy levels and feeling foggy.
• A greater chance of getting chronic diseases, like heart disease, type 2 diabetes, and some cancers.
• Overeating because the body is still hungry for nutrients.

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How Diet Affects the Lungs

Studies have shown that a poor diet can affect lung health.⁵ For example, many people don’t have enough vitamin D. Low vitamin D levels are linked to more frequent lung infections and inflammation.² This can make respiratory symptoms worse.² Being underweight (having a low BMI) can also lead to weaker lungs and poorer health outcomes.²

This post was authored by Alyssa Dittner, B.S., RT, NTTS, PDE and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Myth: Bronchiectasis is a rare condition.

Truth: Bronchiectasis is more common than many people think. New diagnoses have increased by 8% each year since 2001.¹ High-resolution CT scans help doctors find bronchiectasis more easily. The condition causes inflammation (swelling) and infections that can harm lung function.

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Myth: Only smokers get bronchiectasis.

Truth: Smoking can damage the airways, but often smoking is not the cause of bronchiectasis. It can happen for many reasons, including genetic conditions (like alpha-1 antitrypsin deficiency), infections (like pneumonia and tuberculosis), autoimmune diseases (like rheumatoid arthritis) and environmental factors.

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Myth: There is no treatment for bronchiectasis.

Truth: There is no cure for bronchiectasis, but there are many ways to manage it. These include techniques to clear the airways, medicines to treat infections and reduce inflammation, and sometimes surgery. A personalized treatment plan can help improve a person’s quality of life.

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Myth: Bronchiectasis only affects older adults.

Truth: Anyone can develop bronchiectasis. While it is often diagnosed in older adults, it can also affect young people. It is also found in people with COPD, asthma, genetic conditions and a history of lung infections. Interestingly, 40% of cases have unknown causes.²

This blog post was authored by Alyssa Dittner, B.S., RRT and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

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Have you heard of bronchiectasis and chronic obstructive pulmonary disease (COPD) overlap syndrome (BCOS)? This condition occurs when someone has both bronchiectasis and COPD.¹

Bronchiectasis is a lung disease where the airways get wider and scarred, making it hard for mucus to clear out.² This can lead to frequent lung infections. COPD is a different lung disease that makes breathing difficult because airways become blocked and the lungs lose elasticity that helps air move in and out.³ Although they are different diseases, they can show similar symptoms.

Common symptoms of BCOS include:⁴

• Frequent lung infections.
• Daily cough.
• Shortness of breath.
• Mucus production.
• Feeling tired.
• Weight loss.

Because COPD and bronchiectasis can share similar symptoms, some people may take 12 to 17 years to get the right diagnosis.⁵ COPD can be caused by breathing in irritants like tobacco smoke, pollution and chemicals.⁶

By Katie Keating, R.N., M.S

This blog is a summary of a presentation by Emily Henkle, MPH, PhD, at the NTM & Bronchiectasis Patient Conference, San Diego, CA, May 16, 2024.

This blog was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for advancement.

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer and more effective treatments. Treatment during a medication trial could involve active medication or a placebo. A placebo (also known as a “sugar pill”) is a substance or treatment that has no active medical properties but is given to make patients think they are receiving treatment.¹

There are four phases carefully designed to research and study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, treatments or vaccines.²

• Phase I – Explores whether a treatment is safe in a small group.
• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and also look at how well the treatment works in different doses.
• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.
• Phase IV – Monitors long-term safety, interactions with other medications and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks and benefits.³ Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

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This blog is a summary of a presentation by Elisa H. Ignatius, M.D., MSc, John Hopkins Center for NTM and Bronchiectasis, Baltimore, at the NTMIR Patient Conference on May 17, 2024, with additional comments from the author, Katie Keating, R.N., M.S.

This blog was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

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Summary of Dr. Ignatius’ Presentation

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The number of cases of bronchiectasis and NTM lung disease is increasing in the U.S., and the risk increases with age.¹ Managing these diagnoses can be difficult and often involves specialists, frequent visits, multiple medicines and work from the patient to perform daily airway clearance. There can be risks involved with treatment, such as appointment fatigue, drug resistance, side effects, anxiety and depression.² Current treatment plans can be time-consuming and tiresome. As research continues, there is hope for new medication and treatment options to improve everyday living. Dialing into a treatment plan may take time, but where there is a will, there is a way. Those with bronchiectasis and NTM lung disease are encouraged to work with their health care providers (HCPs) to find what works best for their disease.

Six Health Care Providers You May Encounter On Your Journey

• Pulmonologists — These doctors specialize in the lungs and are experts in diagnosing and treating lung-related health conditions. During the visit, an initial work-up will be completed, with follow-up visits every three to six months. A respiratory therapist (RT) may complete tests to measure how well the lungs are working and will review breathing medications and airway clearance techniques.
• Infectious Disease Doctor — Often the lung doctor and infectious disease doctors manage a patient together. Infectious disease doctors are experts on the medicines used to treat infections.
• Gastroenterologist — Problems involving your stomach, such as reflux disease (also called GERD), increase the risk of developing NTM lung disease.³ Reflux can cause swallowing issues and result in aspiration, the backflow or inhaling of stomach contents into your lungs. This specialist may consider running a few tests if needed.
• Allergist — These specialists can treat asthma and other allergic conditions. They test how the body reacts to food, medications and allergens, including mold, pollen, animal fur and seasonal irritants. When a body overreacts to something it is allergic to, it can cause swelling, irritation and increased mucus.⁴

This blog post was authored by Alyssa Dittner, BS, RRT, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

A diagnosis of chronic lung disease can leave people and their families feeling confused. Bambi Miller understands that feeling first-hand because her husband lives with both COPD and bronchiectasis. She has refocused those feelings into a new career path and a passion for raising awareness for chronic lung conditions.

Bambi’s husband was diagnosed with COPD in 1990. After he was hospitalized many times that year, Bambi decided to take action. She left her job as a secretary and went back to school for a career in respiratory therapy. She is currently a respiratory therapist at Cone Health in Greensboro, NC.

“I continue to try and learn everything I can about lung disease to help him. My husband was diagnosed with an additional condition called bronchiectasis. After this, he tried and failed at using many mucus-clearing devices,” Bambi said.

These devices help move mucus so it is easier to cough it up. When he found a device that would help improve his symptoms, insurance declined it. After that, Bambi decided to raise awareness by repurposing shoelaces into bracelets, key chains and lanyards and donating the profits to research.

This blog post was authored by Donna, a person living with bronchiectasis, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

In honor of World Bronchiectasis Day, this blog post was submitted by a community member willing to share her journey with bronchiectasis. World Bronchiectasis Day is celebrated each year on July 1^st. It aims to raise global awareness, share knowledge, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide. Bronchiectasis and NTM 360 thanks Donna for contributing this blog post and sharing her story.

My friend was concerned because her sister in Finland was diagnosed with a horrible lung disease. She had to look up the long name of that fearsome thing… bronchiectasis. I had never heard of anyone else who even knew that word. It got me thinking there might be a support group somewhere and that led me here.

As an infant, I reportedly had a serious respiratory infection and escaped death due to my grandmother's use of poultices. I coughed my whole life according to my other grandmother. In hindsight, I have probably always had asthma and allergies. As a teen through my twenties, I was quite healthy. There were occasional situations when my lungs hurt too much to continue a bike ride, or I couldn’t stop coughing in a dusty place. I never thought too much about it.

I really had no clue about my health, always assumed I was normal because I never smoked. At around age 35, I was finally told I had asthma and given an inhaler. By that time, I was taking allergy shots and, in general, kind of felt miserable. For years, doctors didn’t understand the severity of my discomfort. Finally, after refusing to leave my doctor’s office without some help, the doctor reluctantly ordered a CT scan. I was diagnosed with a severe sinus infection then sent to a surgeon and needed surgery. That sinus surgery happily improved my life considerably.

I believe that the drainage from my infected sinuses caused my lung disease. My coughing increased which created more misery! Over the years, I found several foods that caused problems and now I avoid wheat and dairy completely. I have tried most of the “cures” out there at one time or another. Throughout this process, I learned I have aspergillosis meaning I am highly allergic to aspergillus, a mold in decaying materials. When the aspergillus was discovered in my lungs, I had to take an unpleasant anti-fungal nebulizer medication for a while.