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Thank you so much for your input! I have a difficult time understanding why my questioning funding in my home state would elicit negative comments but I agree with your assessment that people generally are not interested in research funding.
That’s very interesting that interest did surge in MAC with the AIDS epidemic. It is understandable that with compromised immunity, susceptibility goes up, but from what I’ve read, NTMs are on the rise and not only in the immune compromised. I agree that it takes a very astute doctor to even test for MAC-I wasn’t tested for over 2 years, but they certainly searched for every other possibility in my body. Perhaps if MAC/NTMs were better researched and publicized, especially in areas know to have an unusually high number of cases(again, something that would be common
knowledge of with research)doctors, who have been made aware of heightened risk, would be able to diagnosis the disease much faster. I have a lot of lung damage after going so long without treatment and I am a patient at a state university hospital(in 4 different “speciality”departments).
I truly believe there are many people walking around undiagnosed as the symptoms are so varied, in communities who don’t have access to good health care, among people lacking insurance coverage, and as you said, doctors who are blissfully unaware of these infections.
I am one more in the “secret society” of this debilitating disease. Yes, knowledge is power but sometimes I feel like we are living in an ignorance is bliss reality.
Thank you again for responding!
Replies to "Thank you so much for your input! I have a difficult time understanding why my questioning..."
I don't want to start or encourage a argument here, and I feel bad that there were negative comments made. In an ideal world, there would be endless funds to study diseases and find cures. However, we live in a world that is far from ideal.
While this very engaging article (https://www.frontiersin.org/articles/10.3389/fimmu.2020.00303/full) and uses
terms that lead one to think NTM/MAC/MAI is "surging" we are not talking about any kind of cause for alarm here.
First, let me say that I am not certain whether the prevalence of NTM is increasing, or its diagnosis. I know of several people who were sputum-tested this winter after CT scans showed bronchiectasis - 2 of them have had symptoms for a while - but not the almost 5 years that I did.
Second, as to being "on the rise and not only in the immune compromised" - it seems in my reading that most cases are still among people who are either immunocompromised, or who have underlying lung conditions that have caused damage - Cystic Fibrosis, COPD, emphysema, bronchiectasis, chronic bronchitis or asthma, or pneumonia (and now COVID) lung damage. It is entirely possible that people with lung diseases, especially CF, are living longer because of better treatment of their primary ailment, and eventually encounter NTM.
Given the rarity of encountering NTM, it does not surprise me that many doctors have a hard time recognizing it. My first pulmonologist has been practicing for over 30 years, mine was only the 27th case he had ever seen and my ID doc had encountered fewer than 50 cases- both work in a huge multi-disciplinary urban clinic, with a typical patient load of around 1000 patients. They have little time to study the most up-to-date protocols for treating MAC or other rare diseases or infections. I spent many hours studying treatment options Connect, in scientific papers and from National Jewish Health, then discussing with my docs. For example, none had heard of 7% saline nebs before I brought it up.
This is why you often find members on Connect suggesting that people seek care at Mayo, NJH, and other centers that specialize in treating NTM.
Finally, when it comes to both identifying NTM and to finding research dollars, let's try a little math -
About 33 million have diabetes in the US (10,000 per 100,000 of the population), resulting in over 100,000 deaths per year and untold billions in health care costs.
About 1.9 million (550 per 100,000) people per year are diagnosed with cancer and over 600,000 die in the US.
About 86,000 - 100,000 people in the US have NTM (25-30 per 100,000)
Unfortunately, with these numbers, it stands to reason that we stand "at the back of the line" with other rare diseases when seeking funds. Do I like it? No, but I don't know what we can do about it.
I don't plan to say more on this subject, as I prefer to spend my limited time trying to point people towards resources for dealing with NTM and other health issues.
Sue
Connect
Very good analysis. I do walk with you in that if we somehow could unite, such as cancer groups (which I am a cancer survivor as well; oddly two years before my MAC/NTM diagnosis). We could be loud and proud to try to get something for the next generation. I've done my part in the cancer thing with giving major blood for genetics research since all three of us sisters had it yet not our mom strangely. I am trying to give back by reaching out to the few I know and share knowledge. Until it's out in the open in a big way though, not much progress will be made. There are strong support groups, but no empowering groups to help the cause of first awareness and next research. I've shared with women along the way that I felt could possibly have this. I would say the main reaction is denial (I get it; I was there) and usually they do nothing about it. Not even my own sisters will be tested for it. "If we don't test, we don't have it." I totally get it. They're doing fine, so why get tested. I do believe there are many millions more out there. It's showing up in third world countries more as well as our more supposedly medically advanced countries. I just can't see the current treatments being very helpful in third world countries. Most people can't do this regime to stay healthy as it is in this country. It's staggering to do the nebulizing treatments daily and then if one has to go on the 3 drugs once again and sometimes again and again. It seems that there needs to be an immunological solution. Ideas floating. Action lacking. Let me know if you think of anything! Thanks for being part of the group and sharing your ideas.