INSMED Launches Comprehensive Educational Campaign to Raise NTM Lung Disease Awareness

INSMED Launches Comprehensive Educational Campaign to Raise NTM Lung Disease Awareness

Bridgewater, New Jersey based global biopharmaceutical company Insmed Incorporated has announced the launch of NTM Facts, an educational campaign designed to raise awareness of nontuberculous mycobacterial (NTM) lung disease.

NTM lung disease is a rare, frequently chronic infection that can lead to progressive inflammation and damage to the lungs. There are currently no medications specifically indicated for treating NTM in North America or Europe. Current therapeutic approaches usually involve prolonged treatment with multi-drug regimens that are poorly tolerated and have limited effectiveness, especially in patients with severe disease or in patients with disease that is refractory to treatment.

Insmed’s informational campaign features an interactive website,, which is designed to inform healthcare professionals about NTM lung disease signs, symptoms, and the importance of proper diagnosis, as well as providing guideline-based options that may help physicians manage the condition.

The launch of Insmed’s NTM lung disease awareness campaign is timed to coincide with NTM Week, October 18 – 24, part of an American Thoracic Society (ATS) Public Advisory Roundtable (PAR) Lung Disease Week initiative to recognize rare lung disorders and foster interaction between patients and clinicians, representing a society-wide initiative to recognize the many rare lung disorders for which ATS PAR member organizations provide support and guidance to patients and their families. For a series of one-week periods throughout the year, ATS PAR brings particular diseases and conditions and associated patient issues to the front and center of the Society’s agenda.

Nontuberculous Mycobacteria lung disease is a devastating chronic illness mostly affecting women. NTM itself is a naturally occurring environmental bacterial pathogen which impacts tens of thousands of people every year in the United States alone, and is capable of causing irreversible lung damage and can even be fatal when infections are left untreated.

NTM bacteria are widely distributed in the environment, including in soil and tap water, which means people can become infected through everyday activities such as showering and gardening. Nearly every water source contains NTM (one US study showed that NTM were detected in nearly 80 percent of all water samples), and because water heater temperatures are lower than needed to eliminate such pathogens, NTM concentrations of in tap water has increased. The Mycobacterium avium complex (MAC) is one of the most frequently identified species in NTM infections and accounts for more than 80% of all NTM infections

NTM lung disease symptoms are variable, but virtually all patients have chronic or recurring cough, with other symptoms including sputum production, shortness of breath, and chest pain. As NTM advances, systemic side effects, such as fatigue, malaise, and weight loss may become increasingly prevalent.

Not as well-known or understood as Tuberculosis, NTM is now more prevalent than TB in the US, and afflicts an estimated 50,000 to 90,000 people in the United States at any given time, with an estimated 12,000 to 18,000 new infections each year while TB is decreasing. According to a company-sponsored patient chart study, approximately 50,000 patients suffering from NTM lung disease visited physician offices in the United States during 2011. A publication from the National Institutes of Health based on United States Medicare data from 1997-2007 determined that the annual prevalence of patients infected with PNTM in the United States increased 8.2% per year from 20 cases/100,000 to 47 cases/100,000 in people over 65. The infection rate of increases by a factor of 5x in patients over 65 years old, presenting a growing problem as the Baby Boomer population, a demographic cohort expected to nearly double in size by 2030, ages.

A National Institutes of Health multi-state study of patients hospitalized with severe lung infections found NTM lung disease incidence on the rise in the United States. A 2015 publication co-authored by representatives from several US government departments cited prior year statistics leading to a projected 181,037 national annual cases in 2014, and costs to the US healthcare system of approximately $1.7 billion.

Particular risk factors for NTM lung disease include underlying pulmonary problems, prior pneumonia, and a number of genetic diseases including Cystic Fibrosis, COPD, and Alpha-1 Antitrypsin Deficiency which all have been found to have a statistically demonstrable link with NTM. Slender Caucasian women are particularly vulnerable to NTM infection. Additionally immunosuppressive medications such as chemotherapy agents, prednisone, and drugs used to treat conditions such as Rheumatoid Arthritis, psoriasis and Crohns Disease may also increase NTM infection risk.

NTM lung infections are often difficult to diagnose or misdiagnosed because symptoms, such as chronic coughing, shortness of breath, and fatigue, are associated with a variety of other lung conditions. On, healthcare providers can review personal stories of patients living with the daily challenges of chronic NTM lung disease, and the site also provides healthcare providers with a downloadable pocket guide for diagnosing, treating, and preventing NTM lung disease, based on official statements of ATS and the Infectious Diseases Society of America (IDSA) published in 2007.

LewisW“Insmed is dedicated to raising awareness of NTM and we appreciate the importance of connecting physicians with the experiences of patients who are living with the devastating effects of this disease, says Insmed president and chief executive officer Will Lewis. “We look forward to fostering increased awareness and education as part of our ongoing commitment to patients and physicians who are faced with numerous clinical challenges associated with diagnosing and managing NTM lung disease.”

LeitmanP“It is inspiring to see Insmed’s commitment to raising physicians’ awareness about the extensive physical and emotional impact of NTM lung disease,” says Philip Leitman, co-founder and president of NTM Info and Research, Inc. , a non-profit organization formed on behalf of patients with pulmonary NTM disease. Raising NTM awareness will help more patients receive a timely, proper diagnosis and assist physicians in assessing if treatment should be initiated to manage symptoms and disease progression.

For more information, visit:

NTM Facts
NTM Info and Research, Inc.
American Thoracic Society Public Advisory Roundtable

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