Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Here's hoping a)it goes through and b)they follow through!
-
Like -
Helpful -
Hug
1 Reaction@unicorn and @boomerexpert.....well no doubt The website bronchiectasis will report on the ATSociety results after May....
Is one client with cystic fibrosis AND NTM abscesses enough to draw conclusions on? Tdrell
No...not even 100 would.
-
Like -
Helpful -
Hug
1 Reaction@boomerexpert....but I guess one is better than none.tdrell
They had more than one I believe, 9 in phase 2, not sure how many in phase 1, all positive results. And Israel has more people also. They said I could be in next trial!
-
Like -
Helpful -
Hug
1 ReactionUnfortunately statistically one is the same as none for research purposes...
@heathert...did you ever hear back from NJH or FDA? Tdrell
@tdrell Just the normal replys like sign up to follow them. Nothing hopeful unfortunatly. 🙁
I would like to join you in the next trial.
Jo Ann not up to me, get in touch with AIT . Not sure i am in anyway. one doc said he would get in touch, but that is still no guarantee