I have a lot of CF in my family, two cousins and my sister and three 2nd cousins that we know of. I have a two year old daughter who is growing great, in the 75% range, but she constantly has sinus infections and lots of bowel movements, most loose and sometimes greasy. I was wondering if growth is a problem for everyone with CF or if maybe it could become a problem for her later on? I just switched jobs and would like to be on the insurance before I have her tested. Does anyone know if there is a waiting period before I should have her tested so that the insurance would cover her if she does have it?
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Just a few Questions
- Thread starter Beth
- Start date
CFHockeyMom
New member
It's my understanding that CF and other genetic diseases are not considered pre-existing conditions as far as the insurance world goes. We've changed insurance countless times since my son was born and never had to deal with denial of coverage or an extended waiting period due to CF.
Growth is definitely not an issue for everyone with CF. There are plenty of CF'ers out there in the 90th percentile.
If you suspect CF which it sounds like you have a good basis for, don't wait.
Growth is definitely not an issue for everyone with CF. There are plenty of CF'ers out there in the 90th percentile.
If you suspect CF which it sounds like you have a good basis for, don't wait.
CF is a preexisting condition. If she has not had any lapses in insurance coverage, the insurance cannot deny her even with the condition. I would call the local CF center, find it on www.cff.org, and talk to the social worker. The problem with cf is without enzymes, even with good growth, the vitamins are not absorbed. You also do not want to risk bacteria growing unchecked in the lungs. This is serious, do not wait. Please email me with any questions, or you can call me. My name is Jen and I have a 4 year old daughter with cf and have been through all the insurance issues you can imagine. My email is jenirein@yahoo.com, my number is 303-514-8491. We are in Denver. Our social worker is Meg Anthony, and she is at Denver Children's Hospital CF center. She can be reached at 303-861-6181. They are great with insurance questions. Hope this helps!
Jennifer<img src="i/expressions/heart.gif" border="0">
Jennifer<img src="i/expressions/heart.gif" border="0">
Thanks for the Info, the only problem is that she isn't covered by insurance at this time so I'm not sure if this will cause any problems. I only have a few months until we are under insurance. I'll get ahold of the local CF center and ask. Thanks again. My Prayers to all of you. Beth
Beth, how long of a lapse in insurance coverage are we atlking about? The new HIPPA laws protect patients in situations like this. Also, is this lapse in insurance coverage because they new insurance company has a waiting time and is making you wait, or a combination of switching and their waiting time. You do have rights if your daughter has been previously covered. Also, have you looked into state coverage for her, even if she doesn't have CF, if she is without insurance coverage some states have coverage for children.
Julie (wife to Mark 24 w/CF)
Julie (wife to Mark 24 w/CF)
Purplelungs
New member
Also since she hasnt been tested yet you can get her on the insurance. Yes CF is a pre exsisting condition no matter what...but previous insurance coverage allows you to get on other insurances. Get a letter from the last insurance about proof of coverage. Also like Julie said why is it you are waiting, sign up period or change of work making you wait till a certain amount of time has elapsed since you started? Another thing is, although all insurances are different, they allow a certain about of time to elapse for just this, like job changes and such....Depending on the insurance you can have a lapse of 1 to 6 months in lapsed no coverage. You can look into COBRA insurance till the other picks up....COBRA is expensive...but it keeps your daughter covered and you can get her tested faster than waiting for this next insurance to pick up. Then IF she does have cf this next insurance cant say anthing about pre exsisting and no coverage clauses.
L
luke
Guest
Beth,
so long as you do not go more than 64 days without medical coverage your new insurance MUST cover pre-existing illnesses, it is the law. If you are truly concerned about lapsing coverage I would encourgage you to get COBRA coverage untill your new insurance begins.
Luke
so long as you do not go more than 64 days without medical coverage your new insurance MUST cover pre-existing illnesses, it is the law. If you are truly concerned about lapsing coverage I would encourgage you to get COBRA coverage untill your new insurance begins.
Luke
thefrogprincess
New member
I thought the laws regarding lapsses in coverage varied by state.
Also you'll have to check with the insurance to find out what qualifies as a pre-existing condition. Some would not consider it as such if it was previously undiagnosed before she was covered. Many genetic disease don't show symptoms at all until later in life (Huntingtons, Lou Gerhigs) so even though its been there all along they usually won't be considered preexisting.
Also you'll have to check with the insurance to find out what qualifies as a pre-existing condition. Some would not consider it as such if it was previously undiagnosed before she was covered. Many genetic disease don't show symptoms at all until later in life (Huntingtons, Lou Gerhigs) so even though its been there all along they usually won't be considered preexisting.
tessa55454
New member
Don't you just love insurance companies.. IF I could physically go into an insurance companies office, to who ever is the one that actually makes these decisions or a group of people, I wish I could physical vomit all over them.
A nurse of mine has said endless amount of times, "that it is enough that we try to take care of ourselves the best we can, and then their is this huge battle with insurance companies." She always been the best for any type of strange questions I have, or at least she knows the person to go to that has real answers.
It seems to me that their are two major objectives to accomplish with a major health condition, it is the condition and then the insurance company. I am venting a touch, because I sometimes really hate going into the pharmacy and then their being a problem with my insurance, for god knows a million reasons for whatever they can come up with. I am patient, but I will tell you I sometimes would I play a video in my mind that just wants to hold-up the pharmacy and tell them to hand them over.
I have been handeling my own insurance stuff since I was 18, I am 27 now. I have had bills come through 2 plus years later demanding money, even though I had insurance. Theymade mistakes in the billing system on six different clinic visits. FYI: Insurance companies have one year to bill you, if they do not within that year, the facility has to suck it up. It was there mistake, they can not charge you legally binding. However, of course, they are not going to tell you that. They of course threaten to take me to court, that was funny.... IT was a total of around 6,000 dollars, and they had to suck-up at least 3,500 dollars of it, because of there mistake.
Back in MN, the governor cut many many programs. One of them being an outstanding program for patients that had Cf, sickle-cell, and like 3 other diseases. They paid for the premium and the 20% left over. When I was going to school, and this wasn't a program where I could get some at the Universtiy, it was a specialized program through a hospital, the program was cut. I was literaly at school 40 hours a week, and I worked 20-30 hours, which eventually I cut down to no more than 20 hours a week. I couldn't get health insurace through my employer, so after speaking to the social worker I had to get pay the premium and the 20% up to 3,000 dollars of that year. I was 800 dollars away from the 3,000 mark where they would pay 100%. Mind you: if some of you don't know that much about certain health insurance plans. That let's say you get some enzymes for 3 months which mine cost 5,000 something, they take 20% from that, that is contributed into the 3,000 a year amount. So it's not that you have to spend 3,000 a year, which is nothing for CF, it's 5 times that much to start getting covered 100%.
This happened in July, so I was like I said 800 dollars shy of the 3,000. And then of course, I had major lung infection so I got throat culture that costs almost 1,000 dollars and then tobi on top of that so I topped it off. But, I had to pay for it. IF I wasn't working, had saved, had extra school loans to fall back on, sometimes I am not sure what I would do. I guess borrow, which no one likes to do, get an emergency loan or something. Credit cards, but I refuse to put medical expenses on that. As long as you pay a little every month they can't do anything. ONe plus: no interest (as of yet) on health insurance bills. I think the economy would go in a downward spiral if they began doing that.
Insurance companies do enough to pull your hair, but not all the way out. Because, they would loose. IF a product is too expensive (even for insurance companies) it's not a business, cause it's to expensive to buy. They do it just enough for insurance companies will cover it (whatever it is) but enough to make you think and worry about insurance. It's capitalism at it's worst, or best in their minds.
I am trying not to be synical, but really it's the truth. Fortunately on a up note, there is a plus and a minus with CF. There is enough people that have it and are affected by it, that their is research money. It's unforunate that so many people have it, but what are you going to do. I feel horribly bad for rare disease out there that don't have money to do research. I think those are the most unfortunate people, and my heart goes out to them.
sorry for some venting, but it's all true.
Beth, just re-enforce, talk to your social worker, they are an amazing source of info. If they don't have to direct answer they will try. Then they have so much experience working with so many different types of Cf patients and there familes. You have a lot of people in your family, my gosh. My best to all of them.
Tessa 27 w/cf
A nurse of mine has said endless amount of times, "that it is enough that we try to take care of ourselves the best we can, and then their is this huge battle with insurance companies." She always been the best for any type of strange questions I have, or at least she knows the person to go to that has real answers.
It seems to me that their are two major objectives to accomplish with a major health condition, it is the condition and then the insurance company. I am venting a touch, because I sometimes really hate going into the pharmacy and then their being a problem with my insurance, for god knows a million reasons for whatever they can come up with. I am patient, but I will tell you I sometimes would I play a video in my mind that just wants to hold-up the pharmacy and tell them to hand them over.
I have been handeling my own insurance stuff since I was 18, I am 27 now. I have had bills come through 2 plus years later demanding money, even though I had insurance. Theymade mistakes in the billing system on six different clinic visits. FYI: Insurance companies have one year to bill you, if they do not within that year, the facility has to suck it up. It was there mistake, they can not charge you legally binding. However, of course, they are not going to tell you that. They of course threaten to take me to court, that was funny.... IT was a total of around 6,000 dollars, and they had to suck-up at least 3,500 dollars of it, because of there mistake.
Back in MN, the governor cut many many programs. One of them being an outstanding program for patients that had Cf, sickle-cell, and like 3 other diseases. They paid for the premium and the 20% left over. When I was going to school, and this wasn't a program where I could get some at the Universtiy, it was a specialized program through a hospital, the program was cut. I was literaly at school 40 hours a week, and I worked 20-30 hours, which eventually I cut down to no more than 20 hours a week. I couldn't get health insurace through my employer, so after speaking to the social worker I had to get pay the premium and the 20% up to 3,000 dollars of that year. I was 800 dollars away from the 3,000 mark where they would pay 100%. Mind you: if some of you don't know that much about certain health insurance plans. That let's say you get some enzymes for 3 months which mine cost 5,000 something, they take 20% from that, that is contributed into the 3,000 a year amount. So it's not that you have to spend 3,000 a year, which is nothing for CF, it's 5 times that much to start getting covered 100%.
This happened in July, so I was like I said 800 dollars shy of the 3,000. And then of course, I had major lung infection so I got throat culture that costs almost 1,000 dollars and then tobi on top of that so I topped it off. But, I had to pay for it. IF I wasn't working, had saved, had extra school loans to fall back on, sometimes I am not sure what I would do. I guess borrow, which no one likes to do, get an emergency loan or something. Credit cards, but I refuse to put medical expenses on that. As long as you pay a little every month they can't do anything. ONe plus: no interest (as of yet) on health insurance bills. I think the economy would go in a downward spiral if they began doing that.
Insurance companies do enough to pull your hair, but not all the way out. Because, they would loose. IF a product is too expensive (even for insurance companies) it's not a business, cause it's to expensive to buy. They do it just enough for insurance companies will cover it (whatever it is) but enough to make you think and worry about insurance. It's capitalism at it's worst, or best in their minds.
I am trying not to be synical, but really it's the truth. Fortunately on a up note, there is a plus and a minus with CF. There is enough people that have it and are affected by it, that their is research money. It's unforunate that so many people have it, but what are you going to do. I feel horribly bad for rare disease out there that don't have money to do research. I think those are the most unfortunate people, and my heart goes out to them.
sorry for some venting, but it's all true.
Beth, just re-enforce, talk to your social worker, they are an amazing source of info. If they don't have to direct answer they will try. Then they have so much experience working with so many different types of Cf patients and there familes. You have a lot of people in your family, my gosh. My best to all of them.
Tessa 27 w/cf
Thank you all for the information. My mom and I are going in to see the Social Worker somtime next week to talk about the insurance and also to see what we can do as far as fund raising for the cause. Thanks again. It's so nice to know that there are other people out there who are going through the same things I am. I also sent my mom to this site and she loves it. There is so much we don't know yet and this has been a really big help. Thanks. Beth