Bridgewater, New Jersey based Insmed Incorporated, a global biopharmaceutical company with a research and development focus on centered on the needs of patients battling serious rare diseases of high unmet medical need, has announced an Insmed sponsored educational episode on nontuberculous mycobacteria (NTM) lung disease will air on Lifetime’s The Balancing Act as part of the show’s Behind the Mystery of Rare and Genetic Diseases series.
The episode features pulmonology specialist, Leah Lande, MD, of the Lankenau Medical Center, Pulmonary and Critical Care Medicine in Wynnewood, Pennsylvania, and a patient with NTM lung disease. Philip Leitman, co-founder and president of NTM Info and Research, also discuss Mr. Leitman’s wife Fern Leitman’s long-term battle with NTM lung disease. NTM Info and Research is a non-profit organization formed on behalf of patients with NTM lung disease. Mrs. Leitman was referred to Dr. Michael Iseman at National Jewish Health in Denver, where treatment therapies succeeded in stabilizing her condition. During return visits the Leitmans met many patients from different parts of the country, most of whom had experienced delayed diagnoses, were frightened and were often unfamiliar with many aspects of NTM disease. The NTM Info and Research website was developed to help those and other patients.
The series is produced with the aim of uniting patients, physicians, and scientists with research and education to help advance the way the health care system works for those who are diagnosed with rare diseases.
October 18 – 24, is American Thoracic Society (ATS) Public Advisory Roundtable (PAR)’s 2015 NTM Week , during which NTM is front and center of the Society’s agenda to provide support and guidance to patients and their families and associated patient issues.
Insmed has partnered with The Balancing Act to develop the program and provide answers to important questions, such as:
• What is NTM lung disease?
• What are the symptoms of NTM lung disease?
• Why is early diagnosis and monitoring of NTM lung disease important?
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 lung disease 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. NTM can cause irreversible lung damage that can be fatal if left untreated.
According to Insmed, NTM lung disease symptoms of are variable, but, virtually all patients have chronic or recurring cough. Other symptoms include sputum production, shortness of breath, and chest pain. As NTM lung disease advances, systemic side effects, such as fatigue, malaise, and weight loss may become increasingly prevalent.
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 Crohn’s Disease may also increase NTM infection risk.
Like Legionnaire’s disease, NTM lung disease is caused by organisms commonly found in water or soil and it can be difficult to diagnose as its symptoms are similar to other co-existing lung diseases, like bronchiectasis, chronic obstructive pulmonary disease, cystic fibrosis, and pneumoconiosis. 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 percent of all NTM infections
Insmed’s informational NTM campaign features an interactive website, NTMfacts.com, 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.
There are currently no products indicated for the treatment of NTM lung disease in North America or Europe. Current approaches usually involve prolonged treatment with multi-drug regimens that are poorly tolerated with limited effectiveness, especially in patients with severe disease or in those patients with disease that is refractory to treatment.
Not as well-known or understood as Tuberculosis, NTM is now more prevalent than TB in the US (though NTM infections are not contagious like Tuberculosis), 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 an Insmed-sponsored patient chart study, approximately 50,000 patients suffering from NTM lung disease visited physician offices in the United States during 2011. Insmed cites a National Institutes of Health multi-state study of patients hospitalized with severe lung infections based on United States Medicare data from 1997-2007 that calculated annual prevalence of patients infected with PNTM in the United States had increased 8.2 percent per year — from 20 cases/100,000 to 47 cases/100,000 in people over 65. Insmed also references a 2015 publication from co-authors representing several US government departments who state that prior year statistics led to a projected 181,037 national annual cases in 2014 costing the US healthcare system approximately $1.7 billion.
Lifetime’s The Balancing Act
NTM Info and Research, Inc.
American Thoracic Society Public Advisory Roundtable
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