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Round trip through California

Dear expert team,
my daughter (19, CF), is chronically colonized with Achromobater and since February 2016 also with atypical Mycobacteria - Mycobacterium avium. This is at the moment treated under complicated circumstances (partly she doesn't tolerate the antibiotics).
She will be finishing school in 2017 and she likes to do a round trip through California. Concerning the medical care etc., we alreday got some information. This would not really be a problem, as long as the health status is stable.
However now we got to know when asking our CF center, if something would speak against it, that especially California (especially the coast region) as well as Florida (even more) are "contaminated" with the appearance of atypical Mycobacteria and that they dehort rather a trip there (this data was seemingly presented at the North American CF congress).
I have to say, that we never regarded our journeys (and that have been quite some until then) from this standpoint.
Where do I get such data from? As a consequence, one would have to get information if also a jounrey to e.g. South Italy, Spain or Thailand could harm chronical ill people, as nearly all over the world there are bacteria that could harm CF patients.
In spite of this, one is really insecure as soon as one has the information and asks oneself, if one should risk this. Especially I as a mother. On the other hand, she already has a colonization with non-tuberculous Mycobacteria (NTM) and we also do not know, where she got it from!
My daughter is at the moment quite frustrated, as she wanted to do this journey in a quite good health status and now she does not really dare anymore! Especially she has now worries about all other locations, too.
How do you judge the data, would you also dehort from the journey due to the facts and, after all, where do we get the data for the future trips to other places from?
Many thanks for your efforts,
the background facts to your question are quite complex and in the end there are also some factors playing a role, that could not be controlled. Furthermore, the data is not sufficient, in order to make a general statement and a concrete risk estimation; however we want to help that you could judge the data better and so find together with your daughter a satisfactory decision.
The literature on the so-called non-tuberculous Mycobacteria (NTM) is very comprehensive, even if one narrows the search on NTM and CF (four important sources are mentioned at the end of the answer, which we regard to be especially important).
NTM are found in about 13% of CF patients, whereas there are great differences from region to region (from CF center to CF center and from country to country). For CF patients espeically important in all countries are bacteria from the Mycobacterium-avium complex (MAC) and the Mycobacterium abscessus complex (MABS), whereas the first are more found in CF patients in the USA and the latter in CF patients in Europe.
NTM are in general present everywhere in the environment, and have been found especially in many different water reservoirs (surface water, shower heads, public drinking water systems, pools and whirpools) and in the ground. They can survive even in chlorinated water e.g. in so-called biofilms (1). That does not mean on the other hand, that in all of the mentioned reservoirs NTM can be found in general and everywhere, however they are potential sources.
The different dissemination of NTM among CF patients worldwide shows, that obviously also geographical and according to recent data also climatic factors influence the risk of acquiring NTM. Hereby, concerning the USA, there are quite great differences (as you also got to know) between the different states; CF patients from Arizona, Montana, Nevada, the East of the USA (e.g. South Carolina, Mississippi, Florida) as well as Hawaii and Alaska are more freuquently colonized with NTM as the patients in the rest of the country (2). Hereby the high humidity of the air in certain geographical regions seems to favour a colonization (2,3). This is plausible, as the transmission via aerosols (water droplets in the air) is regarded to be an important way. If in the mentioned states NTM are more frequently present in the environment or if only the transmission is easier, can not be answered.
In another study, NTM could be found in water-marsh landscapes of the south-east coast of the USA, especially with high temperatures and low pH value of the ground (3), so that marsh landscapes should be avoided.
The risk of acquiring NTM also depends on certain behaviours; so the usage of indoor swimming-pools came out to be a risk factor, whereas daily showering or contact to the ground was not an increased risk (1). As not all patients, who are exposed to Mycobacteria, do really acquire them, also individual factors (immune system, genetic factors, extent of the impaired cleaning function of the lung) are regarded to be important, that means certain people are more susceptible than others.
Until a few years ago, the environment was regarded to be the main source of infection. Recent knowledge (4) point out, that especially for MABS the transmission from human to human - direct or indirect (that means via contaminated aerosols, surfaces or things) - and from a germ carrier (e.g. a colonized patient) play an important role (4).
In summary, the question, how one can get an infection with NTM, can still not be answered easily. NTM occur in CF patiens worldwide. In regions with high humidity, where NTM are more frequent due to the climate, the case numbers are higher and possibly also the risk to acquire them. Concering the data from the USA one should not forget, that the data is about patients, who live in a certain region. If the regional risk can be transferred also to travellers, is not clear.
It should be recommended in any case, to avoid certain risky expositions, e.g. not to drink water from the tap, not to use indoor pools or whirlpools; not to do trips to the marsh land etc. If one is more protected if one does not go to certain regions of the USA (e.g. Florida) or if one does not go there in certain seasons (e.g. with high humidity) is at the moment not possible to answer. In so far, in our opinion it is not justified to make a general regional travelling warning (apart from e.g. Thailand due to Burkholderia spp.). Comparable data from other countries and regions are also not availabe, either.
As a CF patient has a higher risk to acquire enviornmental germs resp. humid germs (the typical CF germs including NTM), there is always a certain risk when travelling. You will probably hear different opinions among physicians, if a jounrey should be dehorted or not. This is so, because the concrete risk cannot be quantified. Each patient has to weigh in the end on his own the individual loss of quality of life (e.g. because he does not go on a certain trip).
We hope, that you can better judge the data with our help and that you can come together with your daughter to a satisfiying decsion.
Best regards,
Dr. Daniela d’Alquen und Dr. M. Hogardt

(1) Mc Shane PJ and Glassroth JG, “Pulmonary disease due to nontuberculous mycobacteria”. Chest. 2015; 148(6): 1517-27
(2) Adjemian J, et al., “Nontuberculous mycobacteria among patients with cystic fibrosis in the United States: screening practices and environmental risk”. Am J Respr Crit Care Med. 2014; 190(5):581-86
(3) Prevots DR, et al. “Environmental risks for nontuberculous mycobacteria – individual exposures and climatic factors in the cystic fibrosis population”. AnnalsATS. 2014; Vol11(7): 1032-1038
(4) Bryant JM et al.”Emerge and spread of a human transmissible multidrug-resistant nontuberculous mycobacterium”. Science. 2016; Vol 345(6313): 751-757