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Archive: August 2018

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.

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   |   
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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.

Their voices, along with the dozens of patients who submitted written comments prior to the meeting, were heard loud and clear and we want to say THANK YOU!

The Advisory Committee was asked to vote on three questions including whether the primary outcome of culture conversion was clinically meaningful, whether the data showed that Arikayce was safe and effective for all NTM lung disease caused by MAC, and whether Arikayce was safe and effective for NTM lung disease cause by MAC in those who have not achieved culture conversion on standard antibiotic regimens. There was a great deal of discussion about what it meant to a patient to have a negative culture and how that translates to feeling better and doing better. In the end, the Committee voted 8 to 6 in support of culture conversion being a meaningful benefit.

Most importantly, the Committee voted 12 to 2 that Insmed had shown that Arikayce was a safe and effective treatment for those who have limited or no other treatment options. Since all of the patients who participated in the trials had already been on standard therapy, the Committee did not vote favorably that it was safe and effective for all patients but further studies that include newly diagnosed or untreated patients could change this in the future.

We are very pleased with the positive outcome that reflects the strong data that Insmed presented for those patients with nowhere else to turn. While this is not the final say in the approval of the therapy, the final decision will be made by the FDA’s Division of Anti-Infective Products, the COPD Foundation is optimistic that they will follow suit after reviewing the data, results, and comments by the research and the patient community.

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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

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