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NTM/MAC/MAI: We must advocate for ourselves
Throughout the US & its territories, a total of 8580 people are infected with Zika, a virus that is easily prevented and does not harm adults - it can cause birth defects in unborn children of infected people, but that can be prevented. The US is spending hundreds of millions of dollars to search for a vaccine.
In contrast, 1 of every 100,000 people (not including people with HIV) in the US are diagnosed with some form of NTM, most prevalent is MAC/MAI, and that figure is increasing. Under "NTM Facts, A Growing Problem" (https://www.ntmfacts.com/prevalence), here's a few alarming statistics:
"Currently, there are an estimated 86,000 cases of NTM lung infections in the US, 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."
The infection went from one considered as opportunistic (effects mostly those who are very compromised, like the HIV infected) to one that has now invaded the general population.
Yet, by all research and medical standards, treatment with first 2, and now 3 (and in some cases 4) extremely powerful antibiotics is grueling (side-effects similar to those experienced with chemotherapy) thus difficult (for some impossible) to sustain as it must be taken 3X/day for at least 1 year, thus its effectiveness as a cure in many patients is spotty; for an increasing number it can only manage the infection, causing them to be on strong antibiotics for the rest of their lives.
In essence, the bug has become more prevalent (and perhaps stronger), and the medical community's response has been minimal research to ID current antibiotics that may work better than others, then increase the number used to treat it rather than find more appropriate treatments designed to kill this particular bacteria. Exacerbating the problem is the medical conundrum that taking these medications orally has a reduced impact on this infection deep in the lungs. Most researchers agree that the best solution is something that can be introduced directly to the lung via aerosol or inhalant.
Over the past 18 years, no significant research beyond that mentioned above has been conducted to find a more effective cure. The only clinical trial conducted over the past 5 years for an inhaled treatment, Amikacin, is generally being tested on those who have already failed traditional treatments, thus not supplanting them.
I believe that patients who endure the impact of this medical vacuum must push for more research, and better treatments, not just more clinically effective, but with far less side-effects. We can start by contacting top research facilities for this condition (U TX, National Jewish, Mayo Clinic, and the NIH, FDA) asking for more research. We can also talk with our physicians about better treatments, asking them to push for more research. Finally, we can continue to search for, and share, information on clinical trials for new NTM treatments, and our ideas for treatments that could work.
If these facilities continue to hear from a great number of people suffering from this insidious infection, it may have the "squeaky wheel" effect. Most assuredly if we remain silent, willing to trudge along with the existing treatments without asking for something better, we are likely to get nothing better.
I believe patients themselves can have a great impact on improving research. But...only if they hear from us.
Thoughts? Ideas?
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Heather, My list is short.
Both parents had Tuberculosis before I was conceived, I did take hormones for peri menopause. I am 5'9" and have always been thin. Thyroid issues. That's it, was very healthy till I got pneumonia a few times in my 60s and then MAC!
Did I put this info in the right place? Who is collecting this data? Good idea.
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1 ReactionQuestions:
1. Why are more people getting MAC and NTMs now than in the past?
2. Tuberculosis is a reported disease, NTMs are not. They are also difficult and expensive to diagnose and the increase of 8% per year might be very low. If they are growing at even 8% per year that is a number worthy of more research dollars.
3. What do NTMs effect mostly females over age 50? My doctor says there is likely a hormone connection, but uncertain of what that means.
4. Why are tall, thinner framed women more prone to NTMs?
5. What is critical mass to get research dollars going to find better treatments with fewer side effects?
Thanks for this, Kay. In fact, a yearly 8% increase is statistically quite significant, particularly considering that this includes only those who have been diagnosed and somehow it was reported. Researchers agree that the number of people infected with an NTM is much higher. We now have the FDA and Nat'l Jewish looking into this - a good sign. What we must do en masse is push them to move beyond discussions into funded research. The more people heard, the more likely this will get traction.
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2 ReactionsSuch articulate writers are in this support group...cool! Boomerexpert asked for ideas for a call to arms to make the public aware of this budding catastrophy..... How does one get cnn medical involved....or 6o minutes...or???? TerriD
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1 ReactionHere's a great "how-to" to get you started: http://sternstrategy.com/sell-ideas-media-insights-former-cnn-producer/
Here's a few ways to contact CNN: http://www.wikihow.com/Contact-CNN - I've left a message for Dr. Gupta's on FB
To reach 60 Minutes: http://www.9jumpin.com.au/show/60minutes/send-a-story/
I also left this on 60 Minutes' story idea form:
"Formerly relegated to those with HIV as an opportunistic infection, NTM's (Non-Tuberculosis Mycobacteria) - found in everyone's water or soil - are now infecting the general population at an alarming rate. As Zika, which is fully preventable, occupies headlines and top stories, this under-reported, poorly treated, and deadly infection is just heating up. For a bit of an overview: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/
Not only must people be aware, but raised awareness could lead to more effective treatments."
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3 ReactionsHello everyone,
News about NTM is getting out there. I meant to let you know about this a few weeks ago . . . Eric Chase swims for NTM cause.
Manhattan Beach resident Eric Chase has been swimming in the "Dwight Crum Pier to Pier" swim between Manhattan and Hermosa Beach for 20 years. But this year, his athletic endeavor has new meaning. Chase is swimming for a cause: to raise money for a close friend suffering from Nontuberculous Mycobacterial Lung Disease (NTM) and for the thousands of other patients impacted.
source: http://tbrnews.com/news/manhattan_beach/manhattan-beach-resident-swimming-for-ntm-cure/article_6f43f6c8-59ba-11e6-bb1a-67df3d345353.html
Also see this at NTM Info & Research, Inc. - https://www.ntminfo.org/top-news/articles/current-news/item/719-eric-chase-swim-results
I met with my pulmonologist last week, and let him know about 2 blogs to which I belong. And that many of us with NTM or MAC are trying to get the word out to all our docs that we would like NEW RESEARCH, BETTER MEDS -- PREFERABLY INHALABLE DRUGS! I had literature I took him that I posted here. He went to medical school in Michigan and never learned about NTM or MAC since it was not known there; came to SE Wisconsin where he immediately learned the disease is a 'hot spot' here. We discussed 'why' here and not Chicago! He was not aware of the US Food & Drug Admin meeting with NTM patients or caregivers, soliciting their experiences. He asked for the link with the April published results.
Trying to spread the word . . . Paula
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4 ReactionsThat's the ticket, Paula! We all do that and we're well on the way!
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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2 ReactionsBoomer
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
I meant it when I said please feel free to use it as a template for your own local media outlets! Go for it, Kay! And everyone else!
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