I've received a response from the FDA as follows:

"Thank you for writing the Division of Drug Information in the FDA's Center for Drug Evaluation and Research.

We appreciate you for taking the time to share this information and your concerns with us about mycobacterium avium complex (MAC) and other nontuberculous mycobacteria (NTM).

Please understand that FDA takes conditions such as MAC and other NTM infections very seriously. The FDA has a Patient-Focused Drug Development Initiative, which is a commitment under the fifth authorization of the Prescription Drug User Fee Act (PDUFA V) that aims to more systematically gather patients’ perspectives on their condition and available therapies to treat their condition. As part of this commitment, FDA is holding at least 20 public meetings over the course of PDUFA V. In October 2015, a meeting was held on NTM lung infections. You may find information about the NTM meeting held in October at: The Voice of the Patient: Non-Tuberculous Mycobacterial (NTM) Lung Infection (PDF - 860KB) and Public Meeting on Non-Tuberculous Mycobacterial (NTM) Lung Infections Patient-Focused Drug Development.

Additional information about the Patient-Focused Drug Development Initiative can be found at: https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm326192.htm.

Finally, the Center for Disease Control and Prevention (CDC) is one of the major operating components of the Department of Health and Human Services and is the agency that tracks infectious diseases. You may contact the CDC for more information at: 800-CDC-INFO (800-232-4636), TTY: 888-232-6348 Or Email CDC-INFO."

I've done 2 things in response:
1. sent my same earlier message to the CDC as recommended
2. urged the FDA to do more than hold a meeting every 3 years...