Is Texas a good state to live in with CF, are Insurance and CF Hospitals/Centers good

[draz91]

I have a general question about moving and living in Texas with CF, specifically will private insurance, or a specific Texas State Insurance program cover CF related costs? What should a CF patient and family expect to pay in co-pays, insurance costs, and premiums?
Also, what does anyone have a specific experience with living with CF in Texas, good or bad? Does Austin have a good CF Hospital/Center?

Thank you kindly - See more at: http://forum.cysticfibrosis.com/ent...F-Hospitals-Centers-good#sthash.uTzg6BC9.dpuf

 

[triples15]

Hi Draz,

So I'm afraid I won't be of much help, but I want to pitch in what I know so far!

We just moved to San Antonio from Nebraska about 3 weeks ago. I have not had a clinic visit yet, but have one scheduled for mid-September at the Austin clinic. I opted for Austin because I have heard good things about the adult doc there, Dr. Fullmer, and not good things about the clinic in San Antonio. From what I understand, the adult CF clinic is at Dell Children's Hospital, but the adult patients are admitted at Seton. I have also heard good things about the hospital. I have no personal experience to add yet tho, so hopefully others will chime in.

As far as living in Texas, I'm not 100% sold yet. However, San Antonio is a lot different than other parts of Texas, even Austin, which is only about an hour and a half away. It is HOT and HUMID here. I thought I was used to heat and humidity from living in Nebraska, but wow, it is oppressive. I do know that we moved here at the worst possible time for weather though. The humidity does have me reaching for my albuterol inhaler slightly more often than I did at home. From what I have heard, it is less humid even in Austin, so if Austin is your Target destination that may be a tad better.

The one thing I love here is that people are SO friendly! It's crazy! I always thought Nebraskans were friendly until we got here. LOL. And I'm sure the winters will be great!

I can't be of any help in the insurance arena. We have BCBS of TX through my husbands employer, I haven't heard anything about any state run medical programs or anything of that nature.

Well, I better go, but good luck with your decision! Hope you get some more feedback as I know how stressful it can be!

Take Care,

Autumn 33 w/cf

 

[RobinB29]

I was seen in Texas at Dell by Dr. Fuller. He was very competent. When I would be admitted to Seton the nurses and staff were very good, they will bring you a fridge and a microwave and a stationary bike to have in your room. (This was 3 years ago though so I dont know if changes have been made.) I still like the CF center here in Ohio better but the food in Seton isn't bad but I do hope they have improved their gluten free food selection cause I'm moving back in October. They put in my port there too with no issues.

 

[draz91]

Hey Autumn,

Thanks for responding, how do like BCBS of TX? Do they cover all meds, and treatments? How about Hospitalizations and other medical situations? We have BCBS in MA and they have been amazing but again I'm probably in the best state for Health care, everything is covered, all meds, treatments, transplants, procedures for having babies, I mean everything! I work full time, but my wife is the primary subscriber for our family.
I'm trying to get a good idea of what we'll need to pay out of pocket for meds, clinic visits, and future hospitalizations?
Your current situation would mirror ours except my wife is the money maker and I'll be the stay at home dad until we can get settled.
Please private message me if you feel or any advise so far with BCBS, we cant take the winters anymore here and her work industry in Boston is similar to Austin.

Thanks!

 

[draz91]

Hi Robin,

Are you moving back to Ohio strictly because of the care in Austin, work related or insurance coverage? I've heard that southern states like Texas can be difficult for people with CF in terms of not covering certain meds or medical procedures? Did you have any of these issues?

Thanks for your reply!!!

 

[LKBamberg]

I lived in Texas for 15 years. I went to Ft Worth, Austin, and Dallas clinics.

Dallas clinics are pretty terrible. Austin is way better. I was too young to remember Ft Worth.

But insurance is a nightmare in Texas. If you're on medicaid, their coverage is pretty slim. I moved to Portland, and it has been a dream compared to Texas when it comes to food stamps, coverage, providers, alternative medicines (including massage and chiropractic).

Texas is one of the lowest ranked states in the country for social services, specifically for healthcare access, affordability, and quality. I'd avoid it.

 

[TexasTapdog]

I'm in the Fort Worth area, currently on United Health Care(UHC), previously BCBS. I feel the BCBS was better in the sense that referrals were not required for every Doctor except my PCP. Copay's were less overall by 20%'ish. Coverage for dependents was cheaper too.

Scooter

 

[RobinB29]

I moved from Texas to Ohio but now i'm prepping to move back, my husband is military so we go where they send us and health insurance is Tricare and they pay 100% without issue so I really know nothing about other health insurance plans.

 

[BreeAlysia]

I moved from Boston to Austin, but it was before I was diagnosed. I don't go to the CF clinic at Dell, but I have heard good things. I have a coworker whose daughter has gone there since she was a baby. They also treat adults. As far as insurance, to echo what others have said, Texas is real bad. I have BCBS, but I pay a ton more out of pocket than I did back home. For example, it's standard in Texas to have plans with huge deductibles, which is something I don't remember at all in Massachusetts.

 

[boone06]

I have lived in Austin my whole life. I have seen Dr. Fullmer since I was around 18, now 26. The clinic is good, Seton hospital is alright, but insurance can be a pain. If your wife works for a good company it might not be a problem, but all depends on the carrier and plan whether it's good or not. Good Insurance premiums run around $500/employee, $1000/employee+spouse, and more for a family. My wife and I both have CF so it is obviously harder for us but we both work full time and are covered through our employer, although her premium is covered 100% and my premium is only covered 50% leaving me to cover the other 50%. If you have any other questions feel free to friend me on Facebook and send me a message so I know who you are. I don't get on here much unless there is a question or thread I'd like to chime in to.

-Ryan

 

[roeann]

The CF centers appear to be good BUT Texas is among one of the highest uninsured rates in the country. If you plan to move here make sure that your job has insurance. Texas is one of the states that refused to expand their Medicaid program, and their rules regarding who can get coverage as such that when I checked for our then 18 yr old son he didn't qualify for Medicaid even though he was an unemployed full time student. They told me to qualify he had to be declared disabled. Luckily he's covered under my insurance until he's 26. He's working 20-30 hours a week now but his job doesn't appear to offer insurance. If you have asthma you also might want to check out how air qualify effects you - Dallas and Houston's (as well as other cities in the state) air quality is pretty bad during the summer.

 

[JENNYC]

I have lived here my whole life and we have BCBS 20/80. They have covered all of Abby's care no problem. We go to Texas Children's and love it. We get co-pay assistance and hardly pay anything for Abby's meds and it's not because we are poor...CF just has great co pay assistance programs. I've never been anywhere else .... but Texas is a great place to live. If you have any other questions or need more advice feel free to email me: jcurrie@firststarbanktx.com

I do agree with the air quality in Houston and Dallas.....not great at all. And Houston seems to have a lot of MRSA as well according to TX Children's. I think it is because it is so close to the coast and is constantly rained on so lots of dampness to grow bacteria. Of course that's just my assumption. We live in the Bryan College Station area and have no problems.

 

[roeann]

"CF just has great co pay assistance programs"

Jenny,

Can you provide more info on the co-assistance programs? We do get co-pay help with Kalydeco from the pharmaceutical company, but that's the only help we have get outside of my (private) insurance. The state agencies I contacted, and the CF social worker told me my son didn't qualify for any other assistance so am crossing my fingers that I got the wrong info.

Roe

 

[JENNYC]

Absolutely!!!
There is the Cystic Fibrosis Patient Assistance Foundation. Web address is www.cfpaf.org and the phone # is 1-888-315-4154
There is Genentech Access Solutions http://www.genentech-access.com/ 1-800-240-1224
There is Patient Access Network Foundation www.patientaccessnetwork.org 1-866-316-7263
There is Solvay Pharmaceuticals creon.com 1-800-256-8918
And then there is a Recreation Grant that will pay 500 for any physical activity to help your CFer Cystic Fibrosis Lifestyle Foundation http://www.cflf.org/apply-grant

With these assistance programs I pay nothing for Creon and Hyper-sal. And I pay 30.00 for Pulmozyme. I think one of these will help with Tobi and cayston but Abby is not on those so I'm not sure.

I hope this helps!! And all of these are easy to apply for. I've never had any problems.

 

[CFcarebear]

Jenny,

Can you provide more info on the co-assistance programs? We do get co-pay help with Kalydeco from the pharmaceutical company, but that's the only help we have get outside of my (private) insurance. The state agencies I contacted, and the CF social worker told me my son didn't qualify for any other assistance so am crossing my fingers that I got the wrong info.

Roe

More copay assistance programs to add:

TOBI: http://www.tobitime.com/info/co-pay-card-tobi.jspwww.tobitime.com/info/co-pay-card-tobi.jsp
Zenpep: www.Zenpep.com
Cayston: www.cayston.com

My husband and I live in Texas (he is the CFer) We have a High deductible, high out-of-pocket plan that pays 80/20. We have a deductible of $2,500 and an additional out of pocket max of $5,000. With this type of plan, we pay 100% until our $2,500 deductible is met. After that, the insurance company pays 80% and we pay 20% until the $5,000 out of pocket is met. So.......we are responsible for $7,500 total cost per year (of course, this doesn't include the cost of the premiums) There are lots of advantages to a high deductible/OOP plan:

1.) It qualifies for an HSA (we contribute monthly so we have savings for OOP expenses)
2.) The insurance company pays 100% after the deductible and OOP max are met.

For us, we NEVER have to pay more than $500-$1000 out of pocket per year because we STRATEGIZE the order that we refill prescriptions. For example, my husband takes Kalydeco, so we order that Rx FIRST at the beginning of the new insurance year so that we can utilize the HUGE copay help that Vertex provides. Basically, by just ordering that drug first, Vertex will pay not only our deductible for us, but basically all of our OOP Max, too.

I realize that many of you aren't taking Kalydeco. Before my husband started the drug in 2012, we still had a strategy when refilling all prescriptions. We analyzed every single copay/assistance program and figured out which ones payed/helped us the most. We then ordered THOSE drugs first, so that our personal out of pocket expenses were less.

There is a lot of money to save out there if we just put research and strategy to the test! For us, ordering Kalydeco at the beginning of the year saves us thousands of dollars. Before Kalydeco, we weren't able to save as much, but it was still in the thousands!!

Hope some of this helps. Good luck!! We've never lived in another state, but we love living in Texas!

 

[Aboveallislove]

Hey CareBear,

So does the insurance policy treat it as if you had paid the out of pocket for the amounts covered by the pharma companies? Does the pharma company send you a check? The pharmacy? If so, that's awesome and what a great job on your guys parts to be able to figure it out that way! If not, how does it work?

 

[triples15]

More copay assistance programs to add:

TOBI: www.tobitime.com/info/co-pay-card-tobi.jsp
Zenpep: www.Zenpep.com
Cayston: www.cayston.com

My husband and I live in Texas (he is the CFer) We have a High deductible, high out-of-pocket plan that pays 80/20. We have a deductible of $2,500 and an additional out of pocket max of $5,000. With this type of plan, we pay 100% until our $2,500 deductible is met. After that, the insurance company pays 80% and we pay 20% until the $5,000 out of pocket is met. So.......we are responsible for $7,500 total cost per year (of course, this doesn't include the cost of the premiums) There are lots of advantages to a high deductible/OOP plan:

1.) It qualifies for an HSA (we contribute monthly so we have savings for OOP expenses)
2.) The insurance company pays 100% after the deductible and OOP max are met.

For us, we NEVER have to pay more than $500-$1000 out of pocket per year because we STRATEGIZE the order that we refill prescriptions. For example, my husband takes Kalydeco, so we order that Rx FIRST at the beginning of the new insurance year so that we can utilize the HUGE copay help that Vertex provides. Basically, by just ordering that drug first, Vertex will pay not only our deductible for us, but basically all of our OOP Max, too.

I realize that many of you aren't taking Kalydeco. Before my husband started the drug in 2012, we still had a strategy when refilling all prescriptions. We analyzed every single copay/assistance program and figured out which ones payed/helped us the most. We then ordered THOSE drugs first, so that our personal out of pocket expenses were less.

There is a lot of money to save out there if we just put research and strategy to the test! For us, ordering Kalydeco at the beginning of the year saves us thousands of dollars. Before Kalydeco, we weren't able to save as much, but it was still in the thousands!!

Hope some of this helps. Good luck!! We've never lived in another state, but we love living in Texas!

BINGO!! I thought I was the only one that did that. I did that for a couple years while we had our high deductible health plan, and it worked amazingly!
At first I thought the HDHP was going to be terrible, but it turned out to be awesome. My husband just started a new job in March, and there was no HDHP option, so back to the PPO we went. It's been a rude awakening with all the copays. We'd already met our OOP max on our HDHP by March, so everything was free. Makes me sick to think we could have skated the rest of the year for free.

Anyway, I'm not on Kalydeco, but it worked for me to call in my Cayston and Pulmozyme the beginning of January, and that met our deductible and put a big dent in our OOP max. The Cayston Access Program and CFPAF picked up the copays so we didn't pay any of our deductible. By March we had always met our OOP max, and paid very little out of our own pocket, so it was awesome.

Aboveallislove, yes the insurance treats is as if you had paid it out of your own pocket. The insurance just pays their portion and then whatever they didn't pay they apply to your deductible/out-of-pocket max. After your insurance pays, the pharmacy bills the copay assistance program directly, and the assistance program pays the pharmacy.

The assistancy programs definitely are amazing, I can't say enough about how they've helped me.

Autumn 33 w/cf

 

[Dank]

I'm reviving this post. When I was a kid, I lived in San Antonio for the summer and it was brutal. I'm contemplating moving down there again though because my brother lives down there and I'm falling on hard times and he might be able to get me an IT job down there. Do you guys know if the climate has any researched negative effects on CFrs? I was told in the past the humidity is really brutal for people with CF, I just have never seen any real data on it. Although this is one of my last options and I may have to do it anyways, it would be nice to know if I'm sacrificing my health in addition to all the other things I'm leaving behind, lol.. I'll ping the local cf nurses for an opinion as well - but figured I'd ask to see if anyone knew of this..

 

[triples15]

I'm reviving this post. When I was a kid, I lived in San Antonio for the summer and it was brutal. I'm contemplating moving down there again though because my brother lives down there and I'm falling on hard times and he might be able to get me an IT job down there. Do you guys know if the climate has any researched negative effects on CFrs? I was told in the past the humidity is really brutal for people with CF, I just have never seen any real data on it. Although this is one of my last options and I may have to do it anyways, it would be nice to know if I'm sacrificing my health in addition to all the other things I'm leaving behind, lol.. I'll ping the local cf nurses for an opinion as well - but figured I'd ask to see if anyone knew of this..

Hey Dank!

I have been in SA for about a year and a half. Moved here from Nebraska. Last year was the first winter I made it through without needing IVs for as long as I can remember. I wondered if it was a coincidence or a result of the much less harsh fall/winter. Alas, I can't say the same this year as I'm almost 3 weeks into IVs with no improvement. Booo....

As far as the heat/humidity, yes it is brutal. But for us, it's much like winter in Nebraska where we just stay inside for about 3-4 months. My husband has a theory that the humidity is better for me because it keeps my lungs moist. Not so sure about that theory.

Anyway, I chose to go to the CF clinic in Austin after multiple reports that the clinic in SA is in shambles. When I moved here they had no director, we're looking for a nurse etc. My doctor in Austin did say that when SA center gets back on its feet they will start encouraging their SA patients to go back. Let me know if you want the contact info for my cf nurse.

One AWESOME thing about the Austin clinic is that they have a grant program for cf patients that covers ALL of your clinic visits, xrays, lab, sputum cultures. So for example, if my share of my bill from an appointment is $535, they just bill that to the grant program and I don't pay a dime. This doesn't apply to hospitalizations, home IVs, etc, but you won't hear me complaining. Its amazing they have it at all and I wish other centers could follow suit to help CFs with huge financial burden of CF!

Ironically my husband is in IT and we moved down here for a job. He is a Senior Systems Analyst.

I've gotta run, but let me know if you have any follow up questions please. And good luck!! I hope you are feeling better too!!

Autumn

 

[The Dot]

While the humidity can be oppressive in parts of Texas, the dryer climate in West Texas is deadly for CF patients, so where you live in Texas definitely makes a difference. Austin tends to be rather humid and if you have respiratory allergies, they can get worse there because of all the Mountain Cedar.