best insurance coverage for CF?

[jilltaylor]

Hello! So I have an 18 month old with CF and three other children that do not have CF. My husband has been in nursing school so we really haven't done our research on best insurance for this costly health condition until now that he is graduated and working as a nurse. We thought the healthcare industry would be one of the best for health coverage and boy were we wrong. He is working and going back to school for his bachelors which luckily our son still qualifies for medicaid. I have talked to the social worker at the Hospital and basically she has told me that no matter what route we take our life is going to be hard as far as financially. IS SHE RIGHT? I really felt hopeless after talking to her. She said there have been parents making three-digit incomes that still couldn't afford their child's medical costs so they decided to completely change careers just for the health benefits so they could survive financially. We are willing to do what we need to do to provide for our son's health problems. Is there a magic occupation that pays well with great benefits? We are living with my parents because of this situation and its looking like we may never get out on our own again. ANY SUGGESTIONS???? My husband was thinking about getting his MBA with an emphasis in nursing and hopefully that will help him get an administrator position with higher pay. Any thoughts????

 

[4hats]

I have United Healthcare thru work and covers all costs. They covered my vest completely, all my doctor visits are covered less $20 copay. My prescriptions are covered less copays. I probably spend about $100 per month on meds and $20 per doctor visit plus $20 for any diagnostic testing. CT-scans, and x-rays covered less copays. Public sector jobs often times have better benefits. I hope you are able to care for your family's needs.

 

[jilltaylor]

I have United Healthcare thru work and covers all costs. They covered my vest completely, all my doctor visits are covered less $20 copay. My prescriptions are covered less copays. I probably spend about $100 per month on meds and $20 per doctor visit plus $20 for any diagnostic testing. CT-scans, and x-rays covered less copays. Public sector jobs often times have better benefits. I hope you are able to care for your family's needs.

Thanks so much for posting that info. $100 per month isn't bad at all considering how much your meds can add up to each month. I appreciate you telling me about United Healthcare. Good luck to you!

 

[JENNYC]

Well we for the first time are just now bringing home 70K per year, we live in Texas, and have both been at our jobs for 12+ years. We have 2 children, one with CF, and one with no CF. Abby is 7 and has CF, we are on every help program we could find for the medications and we are paying probably around 300 or maybe a little more a month for meds. What has always gotten us is the hospitalizations and surgeries. Abby is a very unusual child in that she has had 15 surgeries already and is usually hospitalized twice a year. While we have really great insurance through my husbands job both medical and pharmacy, it is still hard coming up with the deductibles. He works for the sheriff's dept so it is a really large group, which I believe helps tremendously! He has blue cross for medical and humana for pharmacy. That being said, we just built a 2500 square foot home and while we do live paycheck to paycheck just like everyone else, I don't feel as is CF drags us down. You get use to it. It becomes just another bill just like water, or electricity. It's the getting use to it that's hard. But in the end it will be ok. Just be sure to get the on the programs that are out there or it might take a much bigger chunk out of your wallet. Our medicine bill is cut in half thanks to the programs we are on. Best of luck to you!!!

 

[Christina Corral Chase]

This is so helpful to hear these numbers. I have been blessed for my child to be on medi-cal where we have no costs at all. I have a lot of anxiety about this as we are seeing an end to our poverty, which sounds great, but I dread the medical bills for my son. $100 sounds manageable. $300 a month is so far out of our budget it scares the heck out of me, but I suppose with $70 grand coming in it would be a lot different. I guess we'll just take it one day at a time and hope for the best. Thanks for the pointers.

 

[Ratatosk]

We have BCBS through work. Both DH and I work full time. DS was never eligible for assistance. When he was born he had to have surgery for a bowel obstruction and spent several weeks in the NICU. I believe the costs before insurance coverage was $200,000. Our out of pocket was a couple hundred. 3 years ago he had another bowel obstruction and surgery. Spent 3 weeks in the hospital. Bill was about $175,000 before insurance. Again, we had a few hundred out of pocket.

We pay 20% plus a $15 or 30 copay for medications until we reach an out of pocket max of $1000. Then we just pay the copays. Both DH and I flex. The shocker was the first time we had to pay $500 for a copay on an expensive medication. I usually bank the flex money and put it aside for a rainy day. So far we haven't had to touch it. We thought we'd have to pay 20% for DS vest which was about $12,000, so I assumed we'd use the flex reimbursement for that. Didn't have to. Insurance covered all but a nominal portion.

We are able to take vacations, we put an addition onto our home a few years ago.

We HAD been eligible for the Tobi foundation program; however, we make too much money for that. Pulmozyme I believe has a similar program. CF vitamins weren't covered under our insurance so I was buying them, though once in awhile the clinic would give us extras. We now get vitamins and supplementary beverages or power bars from the creon program.