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.

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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

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.

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

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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.

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.

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.

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

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

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

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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.

Summary of Dr. Ignatius’ Presentation

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

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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.

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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.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Bronchiectasis and NTM lung disease can impact every aspect of our daily lives and the lives of our children. Parenting while dealing with a chronic lung disorder can be very challenging at times, to say the least. Children pick up on cues, signs, and body language from an early age. Your child is always observing you.

Speaking with Your Child About Bronchiectasis and NTM Lung Disease

Communicating to your child honestly about your medical issues is of utmost importance. As a parent, we want to protect our children from the difficulties in life. As a nurse and a parent, I was anxious to communicate honestly with my daughter since I did not want to place a burden on her. I did not want her to feel as though she had to look after me. At the time, she was the child, and I was the parent. I just wanted her to enjoy her childhood.

The goal of the conversation is for them to understand how NTM and bronchiectasis impact your life. Explaining your condition on an age-appropriate level can assist in lessening their fears. The following suggestions may help you prepare to speak with your child:

• Choose the right time and place for the discussion.
• Discuss how NTM and bronchiectasis impact you physically and emotionally and how it can impact the family unit. Do not minimize the impact of the symptoms you are experiencing.
• Make sure to simplify your medical language.
• Accent your strengths, not just your weaknesses.
• Be honest; ongoing trust is key to this discussion. If your child does not understand what is going on, then she/he may become more anxious when you are not feeling well, which may lead them to think the worst-case scenario.
• Listen to her/his response and answer their questions.
• Remind your child that they can always come to speak with you if they have questions or concerns.

Be certain to communicate to your child that you are doing your best to live life to the fullest, so you can be there for them. You and your child are working as a team. We must learn to practice better self-care to enjoy the best quality of life possible. As they say on the airplane, put an oxygen mask on yourself before you take care of someone else; the same applies here.

This conversation and experience will allow your child to grow in their compassion and empathy. It will also teach them how to be resilient and how to deal with adversity. Open communication encourages your child to communicate with you about this and future challenges.

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Energy levels can be unpredictable when you are dealing with a chronic lung disease such as bronchiectasis and/or NTM lung disease. Taking many antibiotics and/or other additional IV or inhaled medications can bring on major fatigue. Not to mention, the infection and inflammation in your body can also contribute to low energy levels. Add to that the additional responsibilities of health care visits and managing your condition can cause you to use up all your time and energy during the day while your child is in school.

It is heart-wrenching to adjust to a “new normal,” not having the same energy you had before diagnosis. However, it is important to get to the point of acceptance that bronchiectasis and/or NTM lung disease are part of your life. This can allow you to move forward to be the best possible parent, under the current (although difficult) circumstances.

Parents need energy to be “there” for their children once they return from school. There was a time when I was so exhausted from the Big 3 drugs that I had to rest much of the day to have enough stamina to look at and sign papers my daughter brought home at 3 p.m.

Lifestyle adjustments are necessary when you have a chronic respiratory condition. Consider these four areas regarding energy management when raising a child:

Nutritional — Many parents have trouble mustering up the energy to shop for food, prepare food and clean up afterward. Enlist the support of family, friends and neighbors to assist you in meal prep for the week (possibly over the weekends). Focus on well-balanced, high proteinand highly nutritious meals featuring fresh or frozen fruits and vegetables since they are the key to healing and the health of your child. Try not to resort to quick-fix, “kid foods” or frozen meals with little nutritional value. An investment in good health starts at a young age. Consider having your groceries delivered to conserve your energy for putting them away instead of using energy grocery shopping.

Emotional — Fatigue lessens our ability to stay strong at times with children. You may be tired from NTM and/or the meds, but setting boundaries with your child is critical. Try not to be passive because you are tired; you deserve respect. Your goal is to achieve a well-balanced, emotionally intact child. Your child will mimic your boundary-setting throughout their lives. Your child observes your daily energy levels and can see that you may not be feeling as well as previous days. Keep the lines of communication open with your child.

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

Hello NTM community!

The MAC2v3 clinical trial led by Dr. Kevin Winthrop and team at Oregon Health & Science University is mid-way through its 6^th year. 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 are working hard to reach our new target enrollment of 466 participants, reduced from 500. As of February, we are pleased to share that the study has enrolled over 400 participants. We are hoping to finish enrollment this fall. This means there are still openings for new participants.

We continue to meet with our study advisory committee, patient advisory panel, and data monitoring committee regularly. These committees provide guidance and ensure that all aspects of the study remain safe. The MAC2v3 study does not have any analyses planned until all the data is in, so we need to follow all patients for 12 months before we can look at the results.

Patients can still be referred virtually for this study without the need to travel to OHSU or local sites. There is no additional requirement other than reaching out to study coordinators. Those interested candidates as well as those accepted can remain with their preferred (treating) physician while getting the benefit of guidance from NTM experts.

Please note, patients must be enrolled prior to starting treatment. If you would like more information regarding participation, or to refer a patient, email MAC2v3@ohsu.edu and they will be happy to help. We have an amazing network of 30+ physicians at 22 sites in North America that are actively enrolling patients, from Hawaii to New York to Texas to Toronto, Canada.

For more information: visit www.MAC2v3study.org or clinicaltrials.gov [#NCT03672630]

Thanks for reading! Emily Henkle, PhD, MPH
MAC2v3 Co-investigator
OHSU-PSU School of Public Health Portland, OR

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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Feelings of anxiety following a diagnosis of a chronic illness are normal. A diagnosis like bronchiectasis and NTM lung disease can bring shock, denial, anger, and fear of the unknown.

Understandably, some may go through a grieving period when there is a change in their health or when learning of a new diagnosis. It is important to mourn your losses, feel the emotional pain, and not bury your feelings. Your health can be at risk if you choose to cope in a negative way. People with new diagnoses should process their feelings instead of finding ways to numb or ignore them.

Beyond the grieving period, we must somehow learn to accept the “new normal,” and find ways to adapt to any limitations that we have. One of my favorite quotes is “Worry is a substitute for not taking action.” We can choose whether we want to stay in the “mudhole” or get up and out of the hole to live a fuller life. It is important to set goals and to go forward. Develop an action plan to include your airway clearance schedule, medication/nebulizer schedule, exercise routine, and activities that bring you joy.

Coping skills and emotional support are extremely helpful in dealing with the frustrations faced along the way. Feelings of disappointment and despair occur with any chronic condition. Identify your coping skills and learn new ones as needed. According to the APA Dictionary of Psychology, coping refers to "the use of cognitive and behavioral strategies to manage the demands of a situation when these are appraised as taxing or exceeding one’s resources or to reduce the negative.”

Many people need to feel some control of their life events. Losing control can contribute to the development of anxiety or depression. Ongoing stress can cause increased levels of stress hormones and possibly decreased strength and further illnesses.¹

My personal suggestions to assist you in coping:

• Ask others to help you.
• Engage in problem-solving.
• Maintain emotionally supportive relationships.
• Lower your expectations.
• Distance yourself from sources of stress.
• Utilize energy-management strategies.
• Do not overbook yourself. Learn to say “no” when appropriate.
• Learn to deal with JOMO, the Joy of Missing Out. Sometimes we push ourselves to do things when we are not feeling well, out of obligation.
• Identify what you can control and what you cannot control.
• Educate family and friends on your limitations of our “invisible condition” (especially before the holidays begin).

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