hi my name is Megan Woodson and i am living with cf. i have had medicade insurance in the past and when i turned 19 they turned me off of. now i am sitting here with No insurance to help pay for my medications. please i need some advice on what i should do! all of you Cf people know how much the cost of our medications and i need some help and advice. you can email me at Lenesce2004@yahoo.com thankyou!
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what is the best insurance for people with Cystic Fibrosis
- Thread starter anonymous
- Start date
They tried to cut my daughter off at 18 but we fought it and won. There is no way anyone can afford CF without any kind of help. We live in Texas and we got her on the Star program but they would not pay for a lung transplant so we got an attorney and was fighting it when my daughter passed away. I have learned that you have to fight for everything but it is worth it. Just don't give up.
Emily65Roses
New member
I'm still on my parents' insurance right now because I'm a full-time student. But even when I graduate, I can stay on their insurance indefinitely because of the CF "status." Check carefully with your insurance. They may not have told you that you can stay on to try and get rid of you... but maybe if you fight it, they'll have to give up, and take you back on it.
thefrogprincess
New member
When my brother and I were still toddlers my mom applied for SSI. It took 7 years of fighting but she finally got it! They had to pay back all the money we would have gotten over those 7 years too. When I was about 15 they changed the rules for who qualifies for SSI and I was kicked off. I wasn't sick enough, how does THAT work?!?!? We fought it again, this time we didn't win.
hi. you should not of been kicked off of medicaid. does your clinic have a social worker? if so, you need to have that person help you. there is also an insurance called COBRA. you should have recieved it when medicaid let you go. its the law. you have to pay like 300 a month but the medications and dr.s visits total more than 300.
i am 28 years old and i live and work in the city. i have insurance through my company but whenever i leave the company or get sick, i receive insurance from COBRA.
also, what about being on your parents insurance. you are a DEPENDANT child. you are allowed to stay on their insurance.
you might also want to call a lawyer.
Jessica 28 wcf
i am 28 years old and i live and work in the city. i have insurance through my company but whenever i leave the company or get sick, i receive insurance from COBRA.
also, what about being on your parents insurance. you are a DEPENDANT child. you are allowed to stay on their insurance.
you might also want to call a lawyer.
Jessica 28 wcf
Frog princess, Just out of curiosity-how old are you? There are SSI qualifications for children with CF, and then for adults. You either have to meet or equal at least one listing. I am just curious if you knew what the specific SSI/SSDI regulation was because if not I can give you some info.
Julie (wife to mark 24 w/CF)
Julie (wife to mark 24 w/CF)
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>hi my name is Megan Woodson and i am living with cf. i have had medicade insurance in the past and when i turned 19 they turned me off of. now i am sitting here with No insurance to help pay for my medications. please i need some advice on what i should do! all of you Cf people know how much the cost of our medications and i need some help and advice. you can email me at Lenesce2004@yahoo.com thankyou!<hr></blockquote>
hi megan, i'm in the same predicament also. luckily i'm in good health at the current time.....heres a few options: genentech runs a program for the pulmozyme, some states provide a certain coverage, and also apply for ssi right now, so when u do get sic it may kick in........medicaid was cut back in '02( thanks repubs)...........if you know something i don't please pm me xt9m@yahoo.com...........thomas
hi megan, i'm in the same predicament also. luckily i'm in good health at the current time.....heres a few options: genentech runs a program for the pulmozyme, some states provide a certain coverage, and also apply for ssi right now, so when u do get sic it may kick in........medicaid was cut back in '02( thanks repubs)...........if you know something i don't please pm me xt9m@yahoo.com...........thomas
I'm still on my parents' insurance right now because I'm a full-time student. But even when I graduate, I can stay on their insurance indefinitely because of the CF "status." Check carefully with your insurance. They may not have told you that you can stay on to try and get rid of you... but maybe if you fight it, they'll have to give up, and take you back on it.
WOW, Emily I would like to know what type of insurance your parents have because I would love to have my daughter on our insurance indefinitely too...please let me know..thanks a ton!!!!!!!!!!!!!!<img src="i/expressions/present.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
WOW, Emily I would like to know what type of insurance your parents have because I would love to have my daughter on our insurance indefinitely too...please let me know..thanks a ton!!!!!!!!!!!!!!<img src="i/expressions/present.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
Purplelungs
New member
To the last poster. Most insurances have a clause in them that states if a dependant ( a child of the carrier) is considered disabled they may recieve insurance as long as the parent or whoever carrying the insurance keeps the coverage and/or job. Its just somethign they dont want you to know. So look into the current insurance you have and ask for all their information on disabilty and different plans they have. We didnt know about this type clause till i was reaching 18 and we were freaking out and my social workin at the clinic was like 'oh no they have to keep you on'. its just if you dont know about it they dont have to tell you so they can drop a person...but if you know about it and send in the right paper work they have no choice but to keep that disabled person. just depends on the clauses and what kind of insurance you have. i would look into the one you currently have first before trying to switch around because that can be a hassle...
to the original poster...look back into getting medicaid. like someone said you might have been on a childrens medicaid and need to get on the adults. or due to your age somethign in their computer sent up a flag and did something and its their error. or sometimes they just try to get people off of it thinking they wont fight back for it. i say try again for it and if they deny you...appeal...always appeal, get social worker help and maybe even a lawyer. but as a cf social worker for their help first because they can get you the right paper work and tell you what you need to do specifically to help your case to get back on SSI and medicaid in your state.
to the original poster...look back into getting medicaid. like someone said you might have been on a childrens medicaid and need to get on the adults. or due to your age somethign in their computer sent up a flag and did something and its their error. or sometimes they just try to get people off of it thinking they wont fight back for it. i say try again for it and if they deny you...appeal...always appeal, get social worker help and maybe even a lawyer. but as a cf social worker for their help first because they can get you the right paper work and tell you what you need to do specifically to help your case to get back on SSI and medicaid in your state.
i think the next time i apply for ssi i will get a lawer. i hav heard that that makes a real difference, but right now i've just recieved some WA state health plan, and i havn't used it yet, so i don't know what it wil cover. The thing which sucks is i probabley am not deathly enough to get the ssi, yet i am poor and hav no private insur. Like i say medicaid is not there unless you have children or qualify for ssi........it is very ironic......perhaps i should have some children, just so i can qualify for medicaid, but i feel i hav been put the sqeez on and am running out of options, and unless the current political climate changes i don't see it getting any better. But yes i need the same advice right now.......any ideas would be welcome...thanks
thomas
19 w/cf
thomas
19 w/cf
Thomas, you really need to be careful about what lawyer you choose though. In my husbands case (which went on for about 26 months) we had a great nice lawyer, but he didn't have any CF experience. He had done back and brain injuires-and been damn good at it. But we were very limited in our choices because we lived in a very small town (pullman Washington-very eastern area). I had do do 90% of the CF research and then provide that to the lawyer, who then drew up all of the paperwork and such (which I probably couldn't have done without him) and got it sent to the SS office. Are you aware of the 3 "qualifications" that need to be met for someone with CF to be considered elgible for SSI/SSDI? If not, I will post the link again so you can visit it. It is a bit complicated to understand, but I can help you out with it if you are interested. oh, and we did finally end up winning our case and are owed 28 months of back pay due to us.
Julie (wife to mark 24 w/CF)
Julie (wife to mark 24 w/CF)
Tom, Here's the link, you might have to cut and paste it-let me know if it doesn't work. I am also going to paste the regulation (3.04) about CF below.
-Julie
<a target=new class=ftalternatingbarlinklarge href="http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm">http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm</a> Go to Respiratory (3.0) and then look for 3.04 which specifically deals with CF, Although other things might apply to you because everybody's CF is different. If you have digestive problems too, you might want to check out 5.00 and see if any of that applies to you. The way we won our case is because Mark had about 1 lung infection every 8-9 months that required nebulized antibiotics (tobi, colistin) but the listing requires he have at least one ever 6 months. Although, he also had episodes of bronchitis as well as some digestive issues (listed under the 5.00) although his digestive issues weren't as bad as the listing required. Because he had a combination of all these things, they found that all that put together was "bad" enough to equal one of the three things they listed. The FEV table didnt' show up, so go to the link to see it.
3.04 Cystic fibrosis. With:
A. An FEV1 equal to or less than the appropriate value specified in table IV corresponding to the individual's height without shoes. (In cases of marked spinal deformity, see. 3.00E.);
or
B. Episodes of bronchitis or pneumonia or hemoptysis (more than bloodstreaked sputum) or respiratory failure (documented according to 3.00C, requiring physician intervention, occurring at least once every 2 months or at least six times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes;
or
C. Persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy.
-Julie
<a target=new class=ftalternatingbarlinklarge href="http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm">http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm</a> Go to Respiratory (3.0) and then look for 3.04 which specifically deals with CF, Although other things might apply to you because everybody's CF is different. If you have digestive problems too, you might want to check out 5.00 and see if any of that applies to you. The way we won our case is because Mark had about 1 lung infection every 8-9 months that required nebulized antibiotics (tobi, colistin) but the listing requires he have at least one ever 6 months. Although, he also had episodes of bronchitis as well as some digestive issues (listed under the 5.00) although his digestive issues weren't as bad as the listing required. Because he had a combination of all these things, they found that all that put together was "bad" enough to equal one of the three things they listed. The FEV table didnt' show up, so go to the link to see it.
3.04 Cystic fibrosis. With:
A. An FEV1 equal to or less than the appropriate value specified in table IV corresponding to the individual's height without shoes. (In cases of marked spinal deformity, see. 3.00E.);
or
B. Episodes of bronchitis or pneumonia or hemoptysis (more than bloodstreaked sputum) or respiratory failure (documented according to 3.00C, requiring physician intervention, occurring at least once every 2 months or at least six times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes;
or
C. Persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy.
Tom, also I forgot to tell you, We kept track of my hubbies daily activities from being awake to going to bed for about 3 weeks so we could give the judge and doctor assisting the judge with our case could see that the tobi, colistin, pulmozyme and chest pt (as well as other pills and inhalers) took up about 3-4 hours of his time every morning, and every night. I can email you a copy of ours so you can have a go by if you wish-I believe it's just a word document. I also kept track of EVERY doctors appointment (on a spread sheet) for over a year and hilighted the frequency of his infections that required nebulized tobi use. If you have hospitilizations or anything like that, you could record them on a spreadsheet like what I can also give you an example of. The SS administration, of course is going to request your records and verify them, but it is so beneficial if you can break it down in something people can glance at quickly and see the timeline of things. I think that, and the daily log for three weeks really helped our case. If you are interested in me sending it to you, email me at division902@hotmail.com and put something about CF in the title.
Julie
Julie
Our social worker at Scott & white Hospital in Temple, Tx is helping us to find resources for insurance for my son. If you want to call your hospital and ask for a social worker. Contact the Assist Program. They will help you with URSO and Ultrase MT18. 1-866-292-2679 or 1-800-750-9835.
Lisa Bush
Lisa Bush