I have a 19month old with CF. He has private health insurance and the premiums, copays and deductibles are eating us alive. Because of my income he does not qualify for any state programs. He does get his Creon free until he is 2. Does anyone know of any other sources of help? Thanks!!
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Does any have info about CF Financial Aide?
- Thread starter anonymous
- Start date
I have a 19month old with CF. He has private health insurance and the premiums, copays and deductibles are eating us alive. Because of my income he does not qualify for any state programs. He does get his Creon free until he is 2. Does anyone know of any other sources of help? Thanks!!
There is some information on this topic under an earlier thread under the "families" section with the heading "Creon5 vs Pancrecarb" and if you scan through it you'll get to a posting by "JazzysMom" with some useful information. There are some others as well so I'd recommend doing some searches on this bulletin board.
Meanwhile - here are some things that have helped my family:
1. While you're on the WeeCare program with Creon, get as much of it as you can when you get close to the 2nd birthday. Be sure the Dr. updates the prescription for a higher quantity. My son is almost 3 and has not used it up yet.
2. Every time you are at the Pediatrician or CF clinic ask the friendliest Nurses or Dr.s for free stuff even if you do not need it that moment. We got most of the special formula this way from the Pediatrician nurse because they had no other patients using Alimentum and just gave us what we could carry. Ditto for high calorie shakes and additives. Same thing with vitamins and nebulizers.
3. Be sure you use a Flexible Spending Account - it takes some of your money out of being taxed that you use for copays and etc and if you're in a high-deductible insurance plan see about the Health Savings Accounts.
4. Look on eBay for things you need that have to come out of pocket - it's suprising what's available there.
5. Some of the drug companies have their own programs to help cover the costs, like for Tobi. Be sure to look up the company on the internet for the drugs you need to see what they've got and don't be afraid to call them even if they don't say anything.
6. We use the CF Services Pharmacy and there is a program called "second helpings" that provides free vitamins and nutritional supplements when you fill an enzyme prescription through them.
Meanwhile - here are some things that have helped my family:
1. While you're on the WeeCare program with Creon, get as much of it as you can when you get close to the 2nd birthday. Be sure the Dr. updates the prescription for a higher quantity. My son is almost 3 and has not used it up yet.
2. Every time you are at the Pediatrician or CF clinic ask the friendliest Nurses or Dr.s for free stuff even if you do not need it that moment. We got most of the special formula this way from the Pediatrician nurse because they had no other patients using Alimentum and just gave us what we could carry. Ditto for high calorie shakes and additives. Same thing with vitamins and nebulizers.
3. Be sure you use a Flexible Spending Account - it takes some of your money out of being taxed that you use for copays and etc and if you're in a high-deductible insurance plan see about the Health Savings Accounts.
4. Look on eBay for things you need that have to come out of pocket - it's suprising what's available there.
5. Some of the drug companies have their own programs to help cover the costs, like for Tobi. Be sure to look up the company on the internet for the drugs you need to see what they've got and don't be afraid to call them even if they don't say anything.
6. We use the CF Services Pharmacy and there is a program called "second helpings" that provides free vitamins and nutritional supplements when you fill an enzyme prescription through them.
There is some information on this topic under an earlier thread under the "families" section with the heading "Creon5 vs Pancrecarb" and if you scan through it you'll get to a posting by "JazzysMom" with some useful information. There are some others as well so I'd recommend doing some searches on this bulletin board.
Meanwhile - here are some things that have helped my family:
1. While you're on the WeeCare program with Creon, get as much of it as you can when you get close to the 2nd birthday. Be sure the Dr. updates the prescription for a higher quantity. My son is almost 3 and has not used it up yet.
2. Every time you are at the Pediatrician or CF clinic ask the friendliest Nurses or Dr.s for free stuff even if you do not need it that moment. We got most of the special formula this way from the Pediatrician nurse because they had no other patients using Alimentum and just gave us what we could carry. Ditto for high calorie shakes and additives. Same thing with vitamins and nebulizers.
3. Be sure you use a Flexible Spending Account - it takes some of your money out of being taxed that you use for copays and etc and if you're in a high-deductible insurance plan see about the Health Savings Accounts.
4. Look on eBay for things you need that have to come out of pocket - it's suprising what's available there.
5. Some of the drug companies have their own programs to help cover the costs, like for Tobi. Be sure to look up the company on the internet for the drugs you need to see what they've got and don't be afraid to call them even if they don't say anything.
6. We use the CF Services Pharmacy and there is a program called "second helpings" that provides free vitamins and nutritional supplements when you fill an enzyme prescription through them.
Meanwhile - here are some things that have helped my family:
1. While you're on the WeeCare program with Creon, get as much of it as you can when you get close to the 2nd birthday. Be sure the Dr. updates the prescription for a higher quantity. My son is almost 3 and has not used it up yet.
2. Every time you are at the Pediatrician or CF clinic ask the friendliest Nurses or Dr.s for free stuff even if you do not need it that moment. We got most of the special formula this way from the Pediatrician nurse because they had no other patients using Alimentum and just gave us what we could carry. Ditto for high calorie shakes and additives. Same thing with vitamins and nebulizers.
3. Be sure you use a Flexible Spending Account - it takes some of your money out of being taxed that you use for copays and etc and if you're in a high-deductible insurance plan see about the Health Savings Accounts.
4. Look on eBay for things you need that have to come out of pocket - it's suprising what's available there.
5. Some of the drug companies have their own programs to help cover the costs, like for Tobi. Be sure to look up the company on the internet for the drugs you need to see what they've got and don't be afraid to call them even if they don't say anything.
6. We use the CF Services Pharmacy and there is a program called "second helpings" that provides free vitamins and nutritional supplements when you fill an enzyme prescription through them.
Tobi foundation -- if your copay is larger than $25 -- they'll cover what isn't covered by your insurance. First time we got tobi a 28 day supply cost us $535!
Also believe that pulmozyme has a similar program. Haven't signed up 'cuz DS was just prescribed that medication -- would be nice 'cuz it's pretty spendy, too.
Also believe that pulmozyme has a similar program. Haven't signed up 'cuz DS was just prescribed that medication -- would be nice 'cuz it's pretty spendy, too.
Tobi foundation -- if your copay is larger than $25 -- they'll cover what isn't covered by your insurance. First time we got tobi a 28 day supply cost us $535!
Also believe that pulmozyme has a similar program. Haven't signed up 'cuz DS was just prescribed that medication -- would be nice 'cuz it's pretty spendy, too.
Also believe that pulmozyme has a similar program. Haven't signed up 'cuz DS was just prescribed that medication -- would be nice 'cuz it's pretty spendy, too.
Haileysmommy
New member
What state do you live in? Here in CO they have a medicaid program that isin't based upon income it goes off the childs disability. Here in CO they just passed a new tobacco tax so the waiting list went from 5 yrs to 6 months. The waiting list went from 500 kids to 30 kids. I would definately ask the social worker at your clinic if there is a similar program where you live. Once they get approved for the program they have it till they are 18, unless they get a job and make more than $2000/mo
Haileysmommy
New member
What state do you live in? Here in CO they have a medicaid program that isin't based upon income it goes off the childs disability. Here in CO they just passed a new tobacco tax so the waiting list went from 5 yrs to 6 months. The waiting list went from 500 kids to 30 kids. I would definately ask the social worker at your clinic if there is a similar program where you live. Once they get approved for the program they have it till they are 18, unless they get a job and make more than $2000/mo
We have a similar program in SC. It's called CRS (children's rehabilitative Services) it is income based but the income is much much higher than most programs. My husband and I qualified and we never qualify for anything income based. It is afiliated with the department of Health and they cover all kinds of stuff, they were going to pay for our formula, but tricare finally stepped up to the plate and paid for it. They always call and ask if there is anything at all that I need. They recently purchased a reflux wedge for my son that cost $260 and they were going to pay for some other medical (recurring) supplies if need be. It might be worth checking with your local agencies to see what is available. My son's early interventionalist hooked us up with it, or I would never have known.
We have a similar program in SC. It's called CRS (children's rehabilitative Services) it is income based but the income is much much higher than most programs. My husband and I qualified and we never qualify for anything income based. It is afiliated with the department of Health and they cover all kinds of stuff, they were going to pay for our formula, but tricare finally stepped up to the plate and paid for it. They always call and ask if there is anything at all that I need. They recently purchased a reflux wedge for my son that cost $260 and they were going to pay for some other medical (recurring) supplies if need be. It might be worth checking with your local agencies to see what is available. My son's early interventionalist hooked us up with it, or I would never have known.
damiensmom
New member
C.R.S is a great place. we have it here in Arizona and it pays for all Damiens meds. My case manager / social worker referred me.
damiensmom
New member
C.R.S is a great place. we have it here in Arizona and it pays for all Damiens meds. My case manager / social worker referred me.
I just posted tons of info on available Patient Assistance Progams. I dont know if anything if it is helpful, but please take a look. When I copied them to this section the underlining didnt take so it might be easier to read from the Adult section, but the info is identical. Good Luck!
I just posted tons of info on available Patient Assistance Progams. I dont know if anything if it is helpful, but please take a look. When I copied them to this section the underlining didnt take so it might be easier to read from the Adult section, but the info is identical. Good Luck!