Lead Author: Philip Leitman
Organization: NTM Info and Research
Re: UN Secretary-General’s High-Level Panel on Access to Medicines, Request for Contribution Submission
To Whom It May Concern:
On behalf of patients with nontuberculous mycobacterial (NTM) lung disease (pulmonary NTM disease), as well as the researchers and physicians, NTM Info & Research (NTMir) urges the United Nations to recognize NTM as an emerging health threat around the world. NTMir is a nonprofit, 501(c)(3) organization formed on behalf of patients with NTM lung disease for the purpose of patient support, medical education, and research. We are the only organization focused specifically on this disease, and we have been at the forefront for over a decade. As a national organization, we serve as the voice of the patients within our community and help serve patient communities in various countries around the world, and offer our flagship publication in eight languages for the benefit of patients and physicians.
Though the NTM patient cohort was previously thought to skew towards women, we now see it impacting more men and more children, and we see more examples of differing patient populations in various regions of the world. NTMs, of which there are more than 100 species, are a naturally occurring pathogen, found in both soil and water including potable water supplies. Thus anyone who is vulnerable to developing an infection, which includes people with lung scarring from previously treated diseases such as tuberculosis, is also vulnerable to developing an NTM lung infection in the future.
At a recent meeting with the U.S. Food & Drug Administration, the agency heard testimony from both patients and experts that improved surveillance and diagnostics, as well as new therapies are urgently needed. Based on current evidence, leading physicians and researchers believe that the diagnosis rate is increasing by 8% per year in the U.S. Unfortunately this rate is likely higher, but due to lack of population surveillance we don’t know by how much more.
NTM lung infection presents an even greater challenge in developing nations, where laboratories often lack both the equipment and training to properly differentiate between NTM and multi-drug resistant tuberculosis (MDR-TB), resulting in improper diagnosis and treatment of the patient. One physician in Cambodia estimates that upwards of 40% of the MDR-TB cases in his region are, in fact, misdiagnosed NTM cases. This is critical because while both diseases are caused by mycobacteria, the treatment protocols are distinctly different for the two diseases.
The problem in Cambodia may be the tip of the iceberg. Lack of knowledge, lack of proper surveillance, lack of training, and lack of access to the medicines needed to treat this disease all present formidable challenges to dealing with NTM as the threat of it grows worldwide. Presently there is no way to calculate what the cost would be to address any of these issues, as it is a global problem, growing in scope, which must be addressed one issue at a time. A fundamental public health objective must be surveillance of global populations to determine the scope of the problem, including geographic distributions of the various strains of NTM, before we can formulate a comprehensive strategy to address shortcomings in diagnostics and treatments in various regions.
President & Co-Founder, NTM Info & Research