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Thread: Moving to Nashville (from New Zealand)- reaching out for contacts and advice

  1. #1

    Moving to Nashville (from New Zealand)- reaching out for contacts and advice


    We are moving to Nashville, TN, all the way from little old New Zealand!

    My husband is originally from New York and our daughter (DDF508)is a dual citizen. The healthcare system in New Zealand is very different- it is publicly funded. Almost all of our CF care has been free, but the downside is that we can't access any of the newer/pricier drugs like Orkambi and Smydecko. We also don't have funded vests (we all do manual CPT instead).

    My husband's new work is offering a healthcare plan through Cigna, which I will be looking further into soon. Can anyone tell me anything about how the insurance thing for CF works? What is covered, what is not? Are some insurance companies better than others? What should we be expecting to pay for?

    The clinic at Vanderbilt sounds good, but I would love to know your real experiences of the paediatric CF department. What area do you live in? Would you recommend or avoid any particular family medical centers? At the moment we are looking at Mount Juliet and Hendersonville as areas to live. Is anyone out there? Let me know what school your PWCF goes to so we can take it off our list ;-)

    Any help or advice would be much appreciated, thank you!
    Mother of daughters. One with DDF508, and one w/o CF.

  2. #2
    I've heard good things about the Vanderbilt clinic. We're in the midwest and travel to a larger city for a CF Clinic about 250 miles away. We just make a day trip or weekend trip out of it. I have friends in the area who do the same and if their child needs a clean out (IVs) they're able to do it at the local hospital.

    We have a different insurance program, but Vertex GPS will work with your insurance company in terms of copay assistance. In our case we have a $2700 deductible and then everything is pretty much covered. With copay assistance from the drug companies with Creon, Pulmozyme and Symdeko, we pretty much meet that amount in January and don't have to pay for anything else. Our company also has an HSA (Health Savings Account) in which money is set aside from our paycheck, which can go toward medial expenses. My company matches what I put in and I can put $2700 pretax dollars in each year.

    And most CF Clinics have enough experience with obtaining Prior Approval. We just went thru this with a refill on DS' symdeko -- insurance took about 2 weeks to review. There are a few "specialty drugs" such as pulmozyme and tobi that require going thru a specialty pharmacy (larger chain or mail order), but most of the time I can just go thru my local family run pharmacy for Creon, Albuterol, azithromycin, etc.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
    I have Humana and have a $1600 individual out of pocket max. I meet that after the first month and pay nothing after that. I also do the max for flex spending so my out of pocket costs are essentially tax free.

  4. #4
    Also make sure you check out Healthwell Foundation website to see if you qualify for a grant.

  5. #5
    I'm a Nashville citizen, also DDF508, 33 years old.
    I grew up in East TN driving the 2 hours to Vanderbilt Pediatric from the age of 5, then transitioned to the adult CF clinic. I moved to California for about 7 years in my 20's and experience FAR inferior healthcare that really made me appreciate Vanderbilt. I moved back to Nashville in 2016 and have been here attending Vanderbilt CF Clinic, Diabetes and Otolaryngology ever since. I cannot recommend Vanderbilt highly enough, they are INCREDIBLE in their all-around care of patience, current research and assistance with logistical and administration headaches.

    As for Insurance.... this is trickier. Nashville is a liberal city in a very conservative state, so TN doesn't put a priority on assisting pre-existing conditions as much as many other states. But if your husband gets Cigna, that's what Vanderbilt prefers. The Cigna 7000 plan is what they recommended to me (as that is "in-network" for their clinic). Vanderbilt administration staff and Specialty Pharmacy are INCREDIBLY helpful working through the loopholes here. Basically they partner with the drug manufacturers for copay assistance programs, and that immediately hits the out of pocket maximum, it's a huge headache, but Vanderbilt will hold your hand through the entire process. I pay roughly $730/month for my wife and my coverage with Cigna, and the insurance is a terrible hassle to work with... BUT once you're in with a doctor, you're in all year. So get as much of a head-start with Vanderbilt and Cigna as possible. Once you finally get all this hassle done with, they will set your daughter up with Orkambi, a Vest, Acapella, what ever she needs.

    Nashville as a city is a great place to live. We're exploding in the tech, healthcare and data sectors... frankly we're getting busier than the city was ready for, so you'll hear a lot of people complain about traffic and how many people are moving here, you'll see cranes all over the skyline, you'll pay an inflated price in rent/real estate (though this should start dropping, my wife is an agent and appraiser and things are beginning to sit on the market a little longer than this time last year)- but generally everyone here is very nice and friendly. We're a surprisingly driven and emotionally healthy city- it's a great place to find intentional and meaningful relationships- this likely goes back to our roots of sitting on the front porch sipping sweet-tea and waving at passersby.
    It can get quite humid here in the summer which is difficult for the lungs of a CFer, but the humidity and bouts of extreme heat generally only last 2 weeks or so, so if you're aware of that your daughter will be fine. It CAN get very cold in the winters for a few weeks, though the past two winters have been mild.

    We do have a local CFF chaper (two blocks from my house actually) and.... well... they are okay. They put on some good events like fundraising concerts, walks, bike rides etc. (they seem to do a LOT of active outdoor events). But my personal experience with them is that they have been in transition with leadership for quite some time, and thus have been chaotic in all my interactions and participation with them in the past. That shouldn't deter you, but if you're looking to get connected with the local chapter here just be aware- you may start something with someone there, then never hear back because that person transitioned (this has happened 3 times with my wife and me- not a problem, just wish I had known that up front).

    While Tennessee has NOTHING on New Zealand, we are a very beautiful state with friendly people and you can get to many wonderful and thriving cities with a short car ride, or a pleasant and busy airport.

    As for where to live, it COMPLETELY depends on where you will be working, as commutes are beginning to get rough. Mount Juliet is a great place, it has historically been a little overpriced as everyone started moving there. Hendersonville is... well it's sort of 'out there'. If you work in the city you're looking at a bit of a commute. My wife would be a better person to answer location questions as she's a real-estate appraiser so can give you some good details on growth trends, commutes and what the best locations would be for the budget range you're looking in. Feel free to reach out if you want any more information and I can connect you two.
    33, ΔΔF-508- Video Producer & Motion Graphics Animator in Nashville, TN

  6. #6
    Thank you so much for all of that excellent information! I'm very grateful.

    Lance2020x I would love to be in touch with you and your wife, I will send you a DM
    Mother of daughters. One with DDF508, and one w/o CF.

  7. #7
    There is a family that I believe is active in the Chatanooga branch of the Cystic Fibrosis Foundation The mom's name is Ginger and they have a little boy wcf.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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