Costs dealing with cystis fibrosis

A

anonymous

New member
We got on the tobi foundation program -- if your copay is more than $25, they'll pay for whatever insurance doesn't cover. We need to get on genetech's program for pulmozyme 'cuz it's $1500 a month before insurance. We have a $1000 out of pocket maximum for scripts. Once we reach that amount, then we pay $15/script. A few of the drugs I can get a 3 months supply at one time -- albuterol & atrovent so that helps defray the costs. The others I get a month at a time -- keflex & zithromax they give me the powdered form and I mix it up, so I don't have to go to the pharmacy every 7-14 days for a new prescription.

DH and I both work full time. Our CF clinic is 3 1/2 hours away and we go 2-4 times a year. I do CPT at 6 a.m., 5:15 and 9:30 p.m. -- and set are alarm for 2 a.m. if DS needs and extra treatment. Our state doesn't have any health care support. What little there is, is income based and even on one salary, we wouldn't qualify. DS isn't sick enough to qualify for SSI or medicaid, plus we make to much money for that too.

DS goes to a day care center -- preschool in the morning. Activities in the afternoon. It's wonderful 'cuz summer or winter they have those kids outside playing and getting fresh air and exercise. Something I wouldn't do if I was a stay at home mom.

Liza
 
A

anonymous

New member
We got on the tobi foundation program -- if your copay is more than $25, they'll pay for whatever insurance doesn't cover. We need to get on genetech's program for pulmozyme 'cuz it's $1500 a month before insurance. We have a $1000 out of pocket maximum for scripts. Once we reach that amount, then we pay $15/script. A few of the drugs I can get a 3 months supply at one time -- albuterol & atrovent so that helps defray the costs. The others I get a month at a time -- keflex & zithromax they give me the powdered form and I mix it up, so I don't have to go to the pharmacy every 7-14 days for a new prescription.

DH and I both work full time. Our CF clinic is 3 1/2 hours away and we go 2-4 times a year. I do CPT at 6 a.m., 5:15 and 9:30 p.m. -- and set are alarm for 2 a.m. if DS needs and extra treatment. Our state doesn't have any health care support. What little there is, is income based and even on one salary, we wouldn't qualify. DS isn't sick enough to qualify for SSI or medicaid, plus we make to much money for that too.

DS goes to a day care center -- preschool in the morning. Activities in the afternoon. It's wonderful 'cuz summer or winter they have those kids outside playing and getting fresh air and exercise. Something I wouldn't do if I was a stay at home mom.

Liza
 
A

anonymous

New member
ok, Thank you everyone that has posted about this.
For my group, we have a 3year old boy , And we have 80% insurance . And for our income is 35,000/ year.
So a few i was reading from all of you have really good insurence. So how much would 20% of the costs be, I am thinking that financally with 80% coverage and 35,000 a year. It is going to be really hard with this. As i see CF's medication are eally expensive.
So for all of you, Having to go through this. Did any of you have more kids afterwards? This is another question i have to answer about CF.
Thank ou everyone.
 
A

anonymous

New member
ok, Thank you everyone that has posted about this.
For my group, we have a 3year old boy , And we have 80% insurance . And for our income is 35,000/ year.
So a few i was reading from all of you have really good insurence. So how much would 20% of the costs be, I am thinking that financally with 80% coverage and 35,000 a year. It is going to be really hard with this. As i see CF's medication are eally expensive.
So for all of you, Having to go through this. Did any of you have more kids afterwards? This is another question i have to answer about CF.
Thank ou everyone.
 
A

anonymous

New member
Our son is 2 1/2. Our income is twice the amount you're talking about. You could go onto the CF Services Pharmacy site (CFF.org) and look at their price list and guestimate from there. I never really pay attention. We're basically responsible for 20% of drug costs plus the $15/per prescription copay. Once we reach $1000 all we have is $15/per script. Doctor appointments are a $20 copay for office calls, but I can't keep track -- CF clinics have all kinds of hidden costs, dietician isn't covered, outpatient hospital. Each local doctor charges $190 for an office call. The doctor in the city it's $220.

We usually hit our out of pocket maximum for prescriptions by summer. this year we hit it a lot sooner because we had pulmozyme added last fall and we started up Tobi in January. Last year I purchased a lot of our prescriptions in December for January & February so I wouldn't have to pay the higher copay. First time you buy tobi the copay is $550+ for a one months supply. Can't recall what we paid for Pulmozyme, but with Zithromax & Actigall the January bill this year was $467.
 
A

anonymous

New member
Our son is 2 1/2. Our income is twice the amount you're talking about. You could go onto the CF Services Pharmacy site (CFF.org) and look at their price list and guestimate from there. I never really pay attention. We're basically responsible for 20% of drug costs plus the $15/per prescription copay. Once we reach $1000 all we have is $15/per script. Doctor appointments are a $20 copay for office calls, but I can't keep track -- CF clinics have all kinds of hidden costs, dietician isn't covered, outpatient hospital. Each local doctor charges $190 for an office call. The doctor in the city it's $220.

We usually hit our out of pocket maximum for prescriptions by summer. this year we hit it a lot sooner because we had pulmozyme added last fall and we started up Tobi in January. Last year I purchased a lot of our prescriptions in December for January & February so I wouldn't have to pay the higher copay. First time you buy tobi the copay is $550+ for a one months supply. Can't recall what we paid for Pulmozyme, but with Zithromax & Actigall the January bill this year was $467.
 
J

julie

New member
Anonymous at 11:12am

Even with insurance coverage that you might have, there are CF assistance programs for medication assistance-based on your income and your current coverage plan. Additionally, have you looked into state medicaid benefits for your child? Some states ive thir benefits based off of a childs medical need vice the parents income. It is very different in each state, but it is definately worth looking into.
 
J

julie

New member
Anonymous at 11:12am

Even with insurance coverage that you might have, there are CF assistance programs for medication assistance-based on your income and your current coverage plan. Additionally, have you looked into state medicaid benefits for your child? Some states ive thir benefits based off of a childs medical need vice the parents income. It is very different in each state, but it is definately worth looking into.
 
A

anonymous

New member
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i was told the cost of raising one c.f is the same as raising 1 and 1/2 children wo/cf
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I would have to say more like 1 with cf and 4 w/out cf in our case.
 
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