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Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
2 Comments   |   
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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.

 

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Tags: Bronchiectasis Caregivers NTM patient support
Categories: Awareness Support

MAC Patient Advisor for Study Advisory Panel

Posted on January 17, 2019   |   
Author: Gretchen   |   
1 Comments   |   
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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.

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Tags: MAC NTM NTM Research Patient Advisor
Categories: Research

Managing Stress with Bronchiectasis and NTM

Posted on November 28, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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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.

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Tags: bronch and NTM coping with chronic illness Quality of Life Stress with bronchiectasis Stress with NTM
Categories: Quality of Life

Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

Posted on November 20, 2018   |   
Author: Gretchen   |   
6 Comments   |   
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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.

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Tags: Bronchiectasis exacerbations NTM prevention of exacerbations Quality of Life Winter exacerbation
Categories: Awareness

Physician Update on Respiratory Disease Treatment: Inhaled Corticosteroids vs. Oral Antibiotics

Posted on September 12, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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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?

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Tags: Bronchiectasis Bronchiectasis Treatment inhaled corticosteroid drugs MAC oral antibiotics
Categories: Research

World Bronchiectasis Conference 2018-Patient Session Recordings

Posted on August 27, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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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.

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.

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Tags: Basics of Bronchiectasis Bronchiectasis Bronchiectasis Treatment Bronchiectasis; NTM; Research NTM Research World Bronchiectasis Conference 2018
Categories: Research

Moving Closer to an Approved Therapy for NTM Lung Disease: FDA Advisory Committee says Arikayce (Inhaled Liposomal Amikacin) is a safe and effective treatment for those with limited options

Posted on August 08, 2018   |   
Author: Gretchen   |   
6 Comments   |   
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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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Tags: Arikayce FDA Inhaled Liposomal Amikacin Inhaled Therapies NTM
Categories: Research

Lend Your Voice to Raising Supplemental Oxygen Awareness

Posted on August 02, 2018   |   
Author: Gretchen   |   
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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.

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Tags: Awareness Bronchiectasis Running on Air
Categories: Awareness

Upcoming FDA Advisory Committee Meeting for ALIS

Posted on July 12, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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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 16th, 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.

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Tags: FDA Insmed NTM
Categories: Research

COPD, Bronchiectasis and NTM Webinar Recording

Posted on July 09, 2018   |   
Author: Gretchen   |   
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We hope you were able to join us for our June 2018 webinar with expert speaker Dr. Charles (Chuck) Daley. We are pleased to offer you the FULL RECORDING of this event. This recording is free and can be accessed at any time.

During the 60-minute webinar, Dr. Daley offered an overview of COPD, bronchiectasis and NTM, including how these conditions relate to one another as well as treatments for each condition. There were two live question and answer sessions during which members of the audience were given the opportunity to ask questions of the expert speaker.

Dr. Charles (Chuck) Daley

National Jewish Health, Denver, CO, USA

 

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Tags: Awareness Bronchiectasis Treatment Bronchiectasis; NTM; Research COPD NTM Treatment
Categories: Awareness

Join the FDA Public Workshop on Inhaled Therapies for Bronchiectasis

Posted on June 06, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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The Food and Drug Administration is holding a public workshop entitled “Development of Inhaled Antibacterial Drugs for Cystic Fibrosis and Non-Cystic Fibrosis Bronchiectasis” on Wednesday, June 27th from 8:30pm to 4:30pm ET.

The purpose of the public workshop is to discuss the clinical trial design challenges and future considerations for inhaled antibacterial products to treat cystic fibrosis (CF) and non-CF bronchiectasis.

Why tune in? Currently, there are no treatments that the FDA has approved specifically for bronchiectasis. This workshop will help to provide a better pathway forward to developing new treatments for CF and non-CF bronchiectasis patients, including a discussion about what outcomes are the best to measure, how long trails should be, and how resistance issues should be handled.

Make your voice heard! Did you know that the FDA also considers information provided by patients when making decisions about how new devices and treatments are developed and approved? Are you a patient with Non-Cystic Fibrosis Bronchiectasis? You can register to speak at this public hearing and provide the patient perspective on your experiences with the disease, how symptoms have impacted your daily life, and what outcomes matter most to you. You are the expert, and speakers at the workshop and staff at the FDA are seeking your help and guidance in future clinical trial designs and inhaled antibacterial products. To sign up to speak or attend the public workshop, you can register here.

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Tags: Bronchiectasis; NTM; Research FDA NTM Patient Voice Therapies
Categories: Research

Event Alert: An Introduction to Bronchiectasis & NTM Webinar

Posted on June 01, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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The COPD Foundation is convening a webinar to educate the COPD community on bronchiectasis and NTM lung disease. Join us for An Introduction to Bronchiectasis and NTM on Wednesday, June 20th from 1:00-2:00pm ET. Expert speaker, Dr. Charles Daley from National Jewish Health will provide an overview, covering the agenda items listed below, and answer questions that community members may have. This event is free, at no cost to the participants, but registration is required. Please click here to register for the event and mark your calendars! You will receive an email with connection instructions upon registering.

An Introduction to Bronchiectasis and NTM

1:00 – 1:05 pm Welcome and Introduction – COPD Foundation

1:05 – 1:20 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are COPD and bronchiectasis? 

o How do they relate?

o How do they differ?

· What causes these conditions?

· What are common symptoms of these conditions?

· How are they diagnosed?

1:20 – 1:30 pm Questions and Answers

1:30 – 1:45 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are NTM?

· How do they relate to COPD and bronchiectasis?

· How are NTM treated in these conditions?

o How is treatment similar?

o How is treatment different?

· What resources are available for patients?

BRONCHIECTASIS AND NTM INITIATIVE WEBSITE/COMMUNITY

BRONCHIECTASIS AND NTM INFORMATION LINE: 1-833-411-LUNG (5864)

NTM INFO & RESEARCH WEBSITE

1:45 – 1:55 pm Questions and Answers

1:55 – 2:00 pm Closing Remarks COPD Foundation

 

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Tags: Bronchiectasis COPD Education Dr. Charles Daley NTM
Categories: Awareness

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