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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@boomerexpert

Here's my letter to the Tampa Bay Times; it was in response to a letter written by an OB/GYN about how preventable Zika is:
"The letter writer, a physician in Miami, the epi-center of the country's "Zika outbreak," rightly reminds us that this mosquito-spread virus, though sadly terribly harmful to (1 in 100) fetuses, has a minimal impact on the vast majority who do contract it, and is completely preventable with a bit of forethought and precaution.
Not getting media attention is a far worse menace in our midst, Florida being the leader of five "hot-spots" nationally for it; one that is impacting a growing number of Americans. It is an extremely damaging lung infection as harmful as TB, contracted from a bacteria that's in all water and soil: you get it primarily by breathing in aerosolized shower water or gardening. It was once an infection limited to the exceptionally immunocomprised (eg folks with HIV) - it now infects both immunocompromised and immunocompetent individuals. The treatment is decades old and minimally effective (has severe side-effects yet for most barely manages the infection let alone cures it), yet little research has been done to find a better one while a growing number of Americans contract it. It's the infectious disease Non-Tubercular Mycobacteria (NTM), the most prevalent version known as MAC/MAI.
In contrast to the total of 8580 people infected with Zika in the US & its territories, here's a few alarming statistics about NTM's from "NTM Facts, A Growing Problem" (https://www.ntmfacts.com/prevalence):
"Currently, there are an estimated 86,000 cases of NTM lung infections in the US (not counting US Territories), and that number continues to grow more than 8% in prevalence every year (with no requirement to report NTM infections as there is for TB, most researchers believe the number is far higher)."
"With the rise of NTM infections, data has shown that NTM is now more prevalent than TB in the US...it has been found that incidences of NTM are increasing while TB is decreasing around the US. ...The rates of NTM infection are increasing in patients aged 65 and over, a population that is expected to double by the year 2030."
While 10's of millions of dollars are being put into research on a vaccine for Zika, little to no research is being done to find a cure for NTM's (something that is quite possible were it to get even half of Zika-type funding). This infection literally eats away at your lungs, is impacting a growing number of Americans, particularly Floridians, and yet little is being done about it.
I speak from personal experience, as I have been diagnosed with MAC, and know that as it stands now, will most likely die prematurely from it.
I hope that by raising awareness, and in honor of all suffering with this infection and the awful side-effects of the minimally effective drugs now in use to combat it when I’m certain better treatments could be found, the next generation will fare better than we have."
Feel free to use all or parts of this in letters to your editors.

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Replies to "Here's my letter to the Tampa Bay Times; it was in response to a letter written..."

Boomer
I changing up this letter and sending it to the Minneapolis and St. Paul newspapers.

Are you ok with this? I basically am taking off the FLA references and leaving the remainder. Please ok before I send. Please put "Kay" so I know you are replying to this.

It's just great, and I am hoping if we send this or similar letters out, we will get some attention to NTMs.

Many thanks
Kay S