This website was designed with a number of purposes in mind. Most are obvious from the content. The designers of the web site are involved in the diagnosis, care and treatment of patients with MAC lung disease, as well as doing clinical research related to these issues. Given that, the specific goals of this website are as follows:
- Provide information for patients about MAC lung disease, including its diagnosis, care, and treatment.
- To allow patients to make better decisions about their diseases, and to help them serve as better advocates for themselves as patients.
- To connect patients with potential support groups comprised primarily (but not exclusively) of women with MAC lung disease. Patients often feel “isolated” with this disease, and meeting and getting to know other patients will help them better deal with their disease and the many issues associated with the disease.
- To provide links to other information sources on MAC and NTM such as the ntminfo.com website that relates to all nontuberculous mycobacteria, not just MAC.
- To provide information about the authors and The University of Texas Health Science Center as a center for treatment and research of MAC lung disease. We are not as well-known as some other institutions and this website should help with that information gap.
- To allow (and encourage) patients and interested persons to help with solutions to this disease, either through financial support of research or getting involved with local and national effort to make MAC and NTM lung disease better known and better funded. Mr. Philip Leitman, husband of a patient with NTM, has been the leader in national efforts to bring legislative attention and research dollars to focus on this disease (see www.ntminfo.com)
- Research is the cornerstone of better patient treatment. One goal of this website is to make patients and interested persons aware of the research that needs to be done with this disease. Studies to be done for MAC include:: a) Determining the outcome of standard three drug treatment for MAC. That is, what percent of patients are cured with the currently recommended three drug regimen for MAC (ongoing research); b) Determining whether a 2 month initial course of streptomycin or amikacin combined with the three oral drugs results in a better outcome than the three drugs alone; c) Determining the outcome and best treatment for MAC lung disease in patients whose MAC has become resistant to biaxin (clarithromycin) and zithromax (azithromycin) (an ongoing but unfunded study); d) Studying multicenter protocols for treatment of patients who fail three drug routine therapy; e) A basic science study to determine the (presumed) genetic defect that puts older Caucasian women at risk for this disease; f) To determine the number of cases of MAC in the U.S. No such studies currently exist, and is hard to sell the need for better diagnosis, treatment, and research without these numbers. MAC is not a communicable disease, and hence is not a reportable disease in most states. Therefore most states have limited data about numbers of positive cultures or patients with MAC.
The list of research projects is endless. The National Institutes of Health (NIH) that fund most research in the USA prefer basic research rather than clinical studies. NIH funds approximately 15% of all submitted grant proposals. There is very little clinical or basic MAC research taking place and additional funding is desperately needed to advance the cause for researching more effective MAC treatment regimens.