Dear All! 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @colapyrus .. Jan, @coylemel333 .. Melody, @cowboy1997, @dianelobosco .. Diane, @david1952 .. David, @del .. Del, @digmeme .. Linda, @donut .. Donna, @ehliny .. , @elaine .. Elaine, @flib .. Flib, @fransky, @georgette12 .. Gina, @jcarr .. @ginak .. Gina ,@gggolfs, GG, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @gaylejean .. Gayle, @jewel8888 .. Julie, @josephene .. Jo, @joanney .. joanney, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Mary jo, @marzz .. , @megan123, .. Jennifer, @melissa23 .. Melissa, @melrosedecosmo .. Rosie ,mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tessie .. Tessie, @tutti .. Lisa, @windwalker .. Terri, @worriedson .. Terry, and anyone else I forgot to make note of!
I have waiting to hear from Dr. Timothy Aksamit on an email I had sent him .. I KNOW just how busy he is but I knew I would get a definitive answer from him that we could trust on the below issue .. it MAY NOT be what we want to hear .. but we do have an answer:

THE QUESTION I ASKED HIM WAS: A question has come up: Does Mayo Clinic keep track of MAC patients so that when/IF the CDC starts to keep track .. just as they do of TB patients .. Mayo Clinic has the data! Below are the related posts: Posted by @katemn, just now @irene5, Irene, that is so interesting .. I really wonder if Mayo Clinic is doing ANYTHING about reporting! I think I am going to copy your post and send to Dr. Aksamit .. ask him if Mayo is doing ANY type of record keeping on MAC patients. *As far as I have been told, it is not legally mandatory to report cases of MAC to the CDC like it is with TB. They have flagged my case in case it comes to that because I made six trips to China and have two Chinese children who were treated with Isoniazid due to positive PPD. I am certain my MAC has nothing to do with that. Positive PPD among international adoptees has to do more with BCG and being given a live virus instead of inactive virus like in the US. If MAC cases had to be documented, I believe things would change for us in terms of treatment. Irene * I do not know the answer to that. I wish all that do get this would be treated at a non-profit learning institution like Mayo, John Hopkins, etc. That way data could be collected. -Terri *Indeed there is no mandatory reporting requirement for MAC as there is for TB or HIV, as they are communicable (person to person), MAC and all other NTM's are not. The idea of giving them a mandatory reporting designation could be a double-edged sword: on one side, the real number of infections would be known which would help dollars flow to research on treatments/cure; on the other side, unless designed accordingly, it could compel folks who are asymptomatic to get treatment (as is currently the case with TB) which of course is not desirable...the US DHHS would be the determiner of reporting status and requirements therein.

DR AKSAMIT ANSWER:
Mrs. Katherine,
Many apologies for the delayed response. Let me get back on this question first.

NTM is NOT a reportable disease in the US, other than in Oregon. This is different than tuberculosis (TB) as you have pointed this out. The US Bronchiectasis and NTM Research Registry, composed of 13 academic centers, collects comprehensive information in a centralized data base of patients in the US with bronchiectasis with and without NTM. Mayo Clinic, like many academic institutions, has the capacity to search our Mayo patient data base for all patients with a diagnosis of NTM or have had NTM isolated in sputum. The primary (and only) limitation of creating local, national, and international data bases of NTM patients is the lack of funding and research support. So, to answer you question... it is easily possible to track and collect data for NTM patients with funding and research support.

Hope this helps. Please let me know if I can provide any additional information or clarification.

Dr. A
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:01

Jump to this post