I think every state has different rules for this, and every insurance company is different... with that said it has been my experience that if you are a full time student, and under the age of 24, you can remain on your parent's health insurance plan (I know this, because I recently lost my health insurance)

After that, I recommend a job, with excellent benefits, maybe a government job, especially one with a union. I'm not sure how true this statements is, but I was told that health insurance companies can deny your meds and such because CF is considered a pre-existing condition...

My boyfriend has CF, and he works for UPS, he has AMAZING health insurance. They cover 100% of almost all of his meds and dr visits. His creon, pulmozime, albuteral... (everything except the sterile water!! But whatever about that) He got blood clots recently, and he got 3 months of lovenox shots, they cost like $8000, he paid nothing, not a freakin penny!!!!!!!!!!!!

When he goes into the hospital, and sometimes when he comes home with a pic line in his arm, he can't go back to work right away... He gets disability, and all, no real problems with his job... but he only works part time, and he doesn't really like it...

Then again, who knows what the situation will be in 18 years, ya know?! Hopefully they will have found a cure, and it won't be an issue :)

The most important thing to do is make sure that she doesn't ever have a period of time when she is uninsured, even if it requires starting a lawn mowing business, so that you can self insure. After my husband graduated, he had to get his own insurance policy, he was able to piggyback on his dad's because he was never uninsured. Insurance companies cannot deny you if you have proof that you have been insured.

Like others have said most insurance company will carry your child until the age of 23/24 and sometimes longer if they still live with you and you support them.

I was on my parents insurance until i graduated from college, then I had a couple of good jobs with excellent insurance. Now i'm in school again, and too old to be on my parent's insurance, and my coverage sucks, and i wish i had saved more money to cover these expenses. the good news is that most drug companies have excellent scholarship and funding programs for those in need. I would recommend setting up a little medical trust fund just in case.

Leisha

It seems to me that your auto/house insurance company can set up a simple ira/trust for things like this. it goes in after taxes in most cases so you don't get it stuck to you when its time to borrow against it or cash it in. i also believe there are state and federal fund programs but you pretty much have to be destitute to get those, if you can work at all or can get out of bed at all, they don't consider you worthy. one other thing to think about is if your child gets to the point that they are bed ridden or unable to perform basic daily functions on their own then they can get their social security started earlier. granted, they take a hit for it, but it might at least be enough to cover enzymes, although those get outrageous at times too. i know that albuterol is pretty much free at this point, i think its less than $20 out of pocket? or am i remembering that wrong? in any case, i might even consider an estate type lawyer to set up a trust now that they will be able to take over at 18 or 24 or when they are out of college. i know my parents didn't do any of those things, but luckily i never had a gap in my insurance, so i don't fall under the pre existing conditions clause. i can tell you this, NEVER let your child's insurance lap, even for a few weeks, if you do, every insurance company will pretty much be able to deny insurance in the future based on high risk uninsurability! i know, its not fair that the government doesn't regulate more closely who they deny insurance to, after all, they will cover a known drug addict or smoker, but won't cover someone who can't help whats wrong with them....maybe i better not get started on this line of thought....but good luck and i'm sure there are plenty of ways out there to help with this tough situation of future finances.

Thanks so much for the advice, it's very helpful. I will make sure her insurance never lapse and also will work on setting up a medical trust for her (this was something I had hear about, but didn't know if it was necessary). Again, thanks so much for the advice. I want to make sure that when she's older she doesn't have to worry about healthcare or the costs associated with it.

I wonder about the same thing for my five year old. It IS true that CF would be considered a pre-existing condition, but I was told by my social worker at the hospital that you must wait for "open enrollment" that way they have to accept you no matter what. I haven't experienced this yet, though, so I don't know how true it is. I've thought of trying to start some sort of saving fund just for his health in the future. Hope that helps. Your daughter is beautiful!
Emily

I am new to the group and checking old entries, so that is why I am now posting. If you ever get desperate you can always move to MI they have childern's special health that covers adult's with cf. Sometime there is a co-pay that goes buy income right now the most you have to pay is 200 per month which is not bad. There is also no maxium income where they cut you off.

Same in SC. If your below poverty level, of course, you can get on medicaid. My Aunt was making around 80K a year, therefore my cousin was covered through a state insurance called Tefra. It is for people with determinal illnesses with no regard to income or age. When and if transplant time comes, hospital and medicine bills soar. Most states and hospitals can cover these soaring costs with little or no charge to you. Check with Social Services in your state or with yuor social worker.
~hugsnkisses