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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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<br><br><br><br><br>Hey Katherine, I read on 'Bronchiecstasis News Today' that there is a <br>clinical trial about to enter it's second phase. It is a clinical trial that <br>'Mast Therapeudics' is doing and the new treatment is called AIR001. This is the <br>new treatment possibly for pseudomonas, as well as Cystic Fibrosis.<br> <br><br>
According to NJ the best way to eliminate the bacteria is from the source using a whole house water filtration system w/a 0.2 micon filter...I have it and believe it works for me...the bad news, it's a tad expensive - around $500 for first filters & system installation, then around $75/filter thereafter
You are right re not being obsessively cautious. You can expend tons of energy getting nowhere, but it's tempting to try!
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1 ReactionIs this study being conducted at Mayo?
@boomerexpert
Your right on, us on the board need to be organize and keep pushing for more research on this disease.
If we don't who will?
We can continue to share with each other any new treatment options we hear of to keep us knowledgeable on the new treatments and trials going on.
Im believing something could be developed in the future to add to our water supply to eradicate the mycobacteria in it.
Also if we have knowledge of alternative treatments that have worked for us to share that info with each other also. Many can be used along side of antibiotics. Or as in my case using alternatives instead antibiotics because my doctor doesn't recommend them unless worse case sernerio arises.
Thanks boomerexpert for keeping this to the forefront of our attention.
Shari
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1 ReactionNo, thank you, Shari! Glad someone else on the forum believes in self-advocacy as much as I!
I feel I have always advocated for myself being a former RN but i got more insults about my profession "you know enough to be dangerous" that was from a shrink, You can only be belittled for so many times when you just say "screw it" for some reason Thye do not believe what I am complaining about when it is visible and expressed like green discharge from my R. nipple that the discharge would stick to my bra after a 12 hour shift and itch like crazy " Don't bother me unless it is bloody? and that is the same side I had the visible hard non painful axillary enlarged lymph node which I was sent to a "TRAUMA SURGEON" in maine of course and dissection off al nodes "fell apart" so none sent to pathology, i also had cording in axilla, then the totally detached ball socket of my R. shoulder ignored I said something is wrong I feel like the ball is detached, and Dr Manseauu in Ocala who interned in Maine said " you do not have to tell me anything about the neglect of care in that state. I was kept overnite due to complications from not being treated a lot sooner as he said to my husband she must of been in a lot of pain cause the shoulder was totally detached and the trauma to other areas was extensive. I had a Catecholamine attack and the 4 dissolvable rods that were place in 2012 are still present along with severe cartilage loss and raggedy bicep but he refuses to operate on me again and sent me to UF Shands to see a top Ortho who said I need the surgical reports before I can tell you whether i can do exploratory surgery and maybe fix that bicep, 3 weeks later I got a call and it was quick " sorry no he will not operate on you" and click goes the phone. then I got the surgical report and was confused at the maybe 15 time outs during the surgery and nothing to say why as usually they do time out to make sure it is right area operated on and then count sponges etc,, but i thought that was excessive. I just hope Mayo will help as they are my last hope as i am having a lot of bloody urine with cloudy foam sludge and odor so bad ? from high urine protein 450 but really higher cause lab test the total volume at 2500cc when actual act was 1400? my lower back is painful and episodes incontince and falling again. . Everything is just getting worse and the oncologist does not seem to be concerned as I guess no protein in blood? well these symptoms are not pleasant and i am bedridden due to the pain of r.shoulder rib cage , middle back and lower back , 60 years old and I told my husband why is god keeping me here haven't I been thru enough and i have always been the most giving person , I do not understand , I saw Dr Mery Lossata Hospice and Palliative care and hope Mayo will put in Palliative care as I can barely sit up to visit my adult children 15 min and i am back in my bed.
Hi @canderson12
Good for you for advocating for your care. It is important. You've posted your message in a discussion about advocating for research for mycobacterium avium complex (MAC), nontuberculous mycobacteria (NTM) and bronchiectasis lung infections. I'd like to invite you to join a couple discussions about advocacy in palliative care. For example, click these links:
- Palliative Care and Hospice Care https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/
- Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care
In the video, Dr. Maisha Robinson talks about palliative care at Mayo Clinic. She established a neuropalliative care program at Mayo Clinic in Jacksonville, FL, where she serves as the Medical Director of Palliative Medicine.
I look forward to seeing you in these discussions.
Colleen
PS: To unsubscribe from the "MAC & Bronchiectasis" group, simply click "unsubscirbe" at the bottom of the email notification.
@canderson12 Hi there. I just read your posts, and I must say, you sound miserable. Did you ever get an appointment with the Mayo Clinic? I feel like; if anybody can figure out what is really going on with you, it would be them. You were not wrong in wondering if it might be better for doctors to share knowledge and work as a team. After all, that is how the Mayo operates. I hope that you get the answers that you seek, and can turn your health around.
AIT Therapeutics Announces $9.82 Million Private Placement
NEW YORK, Feb. 16, 2018 (GLOBE NEWSWIRE) -- AIT Therapeutics Inc. (OTC:AITB), a clinical-stage biopharmaceutical company focused on developing inhaled Nitric Oxide (NO) for the treatment of patients with serious lung infections and pulmonary hypertension, today announced that it has completed a private placement with a select group of investors, which, assuming the exercise of the Tranche A portion of the warrants (as described below) sold in the private placement, will result in gross proceeds to the Company of approximately $9.82 million, before deducting placement agent fees and offering expenses. The private placement consists of warrants to purchase shares of the Company’s common stock. Each warrant is comprised of (i) 2,299,802 Tranche A warrants to purchase one share of common stock at an exercise price of $4.25 per share, exercisable within three days from warrant issuance, and (ii) an equal number of Tranche B warrants to purchase one share of common stock at an exercise price of $4.25 per share, exercisable within three years from warrant issuance. The Company has also agreed to provide the investors customary resale registration rights with respect to the shares of common stock issuable upon exercise of the warrants.
AIT Therapeutics expects to use the proceeds from the offering primarily to support the Company’s ongoing operations related to its three inhaled Nitric Oxide (NO) programs:
Persistent Pulmonary Hypertension of the Newborn (PPHN)
• AIT anticipates a 510k regulatory submission in the United States (US) around year-end 2018
• Select regulatory filings outside the US are planned to begin in 2019
Bronchiolitis (BRO)
• Data from a pilot study were published in 2017 in the Pediatric Pulmonology Journal
• A 94 patient study is ongoing in Israel with top-line data expected to be reported early in the second quarter of 2018
• A US pivotal study is expected to start in the fourth quarter of 2018 and complete in the second quarter of 2019 with a US regulatory filing to follow shortly thereafter
• Regulatory filings outside the US are planned to begin in 2020
Nontuberculous Mycobacteria (NTM) Abscessus
• AIT recently announced preliminary results from a pilot study and will present the full dataset at the American Thoracic Society Meeting, to be held in San Diego from May 18 to 23, 2018
• AIT anticipates meeting with FDA during the second quarter of 2018 to discuss a pivotal trial design
• AIT anticipates the completion of treatment of one cystic fibrosis patient suffering from NTM abscessus around the end of the first quarter 2018. The treatment will be administered at the National Heart, Lung, and Blood Institute (NHLBI) with our commercial scale generator based NO delivery system
Laidlaw & Co. (UK) Ltd. acted as lead placement agent for the transaction and Brookline Capital, a division of CIM Securities, acted as co-placement agent.
The securities to be sold in this private placement have not been registered under the Securities Act
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