overwhelmed with RX $$$

B

brematt

New member
I'm so glad I found this website. I've been reading a lot of the blogs and have been able to identify with many of them.
My son has gone 11 years undx. It's not that he hasn't been sick. Everytime I brought up a concern to his doctor, it was explained away by things like colic, allergies, lactose intolerance, and my favorite, "boys eat a lot". When I brought up his excessive sweating at one of his infant check-ups, the ped. dr. checked his heart (he was born with a vsd) and left it at that.
I finally decided I wasn't crazy and pushed for testing in October of 2006. We started out thinking he had Celiacs. In December he was diagnosed with CF. Everthing changed overnight. Now he's taking 20 pills a day (including supplements) and doing breathing treatments. His chest xray showed beginning stages of lung damage consistant with cf and we had no idea! To him, all these symptoms he's had all his life are "normal". It's made a lot of obvious symptoms become invisible. Now we have to help him understand that how he feels most of the time is not "normal" and teach him how to pay attention to his symptoms.

The biggest shock so far, however, has been the cost of Rx. We're at over $500/mo so far. He has decent insurance, but it doesn't cover much medication. We had our first appt at the CF clinic, but of course the social worker was gone. I'm not sure where to get help. He's on Ultrase, and Urso (elevated liver enzymes), ADEK, Albuterol and Hypertonic Saline. We ended up going with the hypertonic saline treatments over the DNase because of cost, but the pharm.is having trouble finding the correct dosage. If it's not one thing...... We'd also like to get him a vest so he can have some independence, but WHOAH! How on earth is that even possible??? I know I'm a newbie so a bit niave, but that's why I'm asking advice from those who have been there already. Thanks!
 
B

brematt

New member
I'm so glad I found this website. I've been reading a lot of the blogs and have been able to identify with many of them.
My son has gone 11 years undx. It's not that he hasn't been sick. Everytime I brought up a concern to his doctor, it was explained away by things like colic, allergies, lactose intolerance, and my favorite, "boys eat a lot". When I brought up his excessive sweating at one of his infant check-ups, the ped. dr. checked his heart (he was born with a vsd) and left it at that.
I finally decided I wasn't crazy and pushed for testing in October of 2006. We started out thinking he had Celiacs. In December he was diagnosed with CF. Everthing changed overnight. Now he's taking 20 pills a day (including supplements) and doing breathing treatments. His chest xray showed beginning stages of lung damage consistant with cf and we had no idea! To him, all these symptoms he's had all his life are "normal". It's made a lot of obvious symptoms become invisible. Now we have to help him understand that how he feels most of the time is not "normal" and teach him how to pay attention to his symptoms.

The biggest shock so far, however, has been the cost of Rx. We're at over $500/mo so far. He has decent insurance, but it doesn't cover much medication. We had our first appt at the CF clinic, but of course the social worker was gone. I'm not sure where to get help. He's on Ultrase, and Urso (elevated liver enzymes), ADEK, Albuterol and Hypertonic Saline. We ended up going with the hypertonic saline treatments over the DNase because of cost, but the pharm.is having trouble finding the correct dosage. If it's not one thing...... We'd also like to get him a vest so he can have some independence, but WHOAH! How on earth is that even possible??? I know I'm a newbie so a bit niave, but that's why I'm asking advice from those who have been there already. Thanks!
 
B

brematt

New member
I'm so glad I found this website. I've been reading a lot of the blogs and have been able to identify with many of them.
My son has gone 11 years undx. It's not that he hasn't been sick. Everytime I brought up a concern to his doctor, it was explained away by things like colic, allergies, lactose intolerance, and my favorite, "boys eat a lot". When I brought up his excessive sweating at one of his infant check-ups, the ped. dr. checked his heart (he was born with a vsd) and left it at that.
I finally decided I wasn't crazy and pushed for testing in October of 2006. We started out thinking he had Celiacs. In December he was diagnosed with CF. Everthing changed overnight. Now he's taking 20 pills a day (including supplements) and doing breathing treatments. His chest xray showed beginning stages of lung damage consistant with cf and we had no idea! To him, all these symptoms he's had all his life are "normal". It's made a lot of obvious symptoms become invisible. Now we have to help him understand that how he feels most of the time is not "normal" and teach him how to pay attention to his symptoms.

The biggest shock so far, however, has been the cost of Rx. We're at over $500/mo so far. He has decent insurance, but it doesn't cover much medication. We had our first appt at the CF clinic, but of course the social worker was gone. I'm not sure where to get help. He's on Ultrase, and Urso (elevated liver enzymes), ADEK, Albuterol and Hypertonic Saline. We ended up going with the hypertonic saline treatments over the DNase because of cost, but the pharm.is having trouble finding the correct dosage. If it's not one thing...... We'd also like to get him a vest so he can have some independence, but WHOAH! How on earth is that even possible??? I know I'm a newbie so a bit niave, but that's why I'm asking advice from those who have been there already. Thanks!
 
K

ktsmom

New member
I'm really sorry for the diagnosis, but thank goodness your son can now get the treatments he needs. Wow, what a shock this must be. You are already 'speaking the language' though so think of how far you have come in such a short time.

There are lots of assistance programs; there are three "Assistance Programs" posts written by one of the regulars that I'm sure they will bump or respond to you with a link.

The vest is generally covered by insurance although it may take some strong advocacy skills. The social worker and the clinic should be able to help. The way ours worked was a 12-month payout, kind of like a rent-to-own. Our co-insurance was 20% (of $16,000......choke)

You may find as news gets out that friends, co-workers, etc. will raise money for you directly (this happened to us! we were humbled and grateful).

Pharmacies - we use a combination of a special CF pharmacy (out of town), Walgreens, and a local compounding pharmacy.

Sorry not much help but I mostly just wanted to lend some support. Your post will be flooded with more helpful responses in no time. Welcome to the forums.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
I'm really sorry for the diagnosis, but thank goodness your son can now get the treatments he needs. Wow, what a shock this must be. You are already 'speaking the language' though so think of how far you have come in such a short time.

There are lots of assistance programs; there are three "Assistance Programs" posts written by one of the regulars that I'm sure they will bump or respond to you with a link.

The vest is generally covered by insurance although it may take some strong advocacy skills. The social worker and the clinic should be able to help. The way ours worked was a 12-month payout, kind of like a rent-to-own. Our co-insurance was 20% (of $16,000......choke)

You may find as news gets out that friends, co-workers, etc. will raise money for you directly (this happened to us! we were humbled and grateful).

Pharmacies - we use a combination of a special CF pharmacy (out of town), Walgreens, and a local compounding pharmacy.

Sorry not much help but I mostly just wanted to lend some support. Your post will be flooded with more helpful responses in no time. Welcome to the forums.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
I'm really sorry for the diagnosis, but thank goodness your son can now get the treatments he needs. Wow, what a shock this must be. You are already 'speaking the language' though so think of how far you have come in such a short time.

There are lots of assistance programs; there are three "Assistance Programs" posts written by one of the regulars that I'm sure they will bump or respond to you with a link.

The vest is generally covered by insurance although it may take some strong advocacy skills. The social worker and the clinic should be able to help. The way ours worked was a 12-month payout, kind of like a rent-to-own. Our co-insurance was 20% (of $16,000......choke)

You may find as news gets out that friends, co-workers, etc. will raise money for you directly (this happened to us! we were humbled and grateful).

Pharmacies - we use a combination of a special CF pharmacy (out of town), Walgreens, and a local compounding pharmacy.

Sorry not much help but I mostly just wanted to lend some support. Your post will be flooded with more helpful responses in no time. Welcome to the forums.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
R

Ratatosk

Administrator
Staff member
I believe Genetech (Pulmozyme) and Tobi, both have assistance programs to help defray the costs of copays. First time I filled the tobi script our portion was $536 --- eek! Fortunately we have a $1000 out of pocket max on our meds per year and then we are just responsible for $15 per med. You can check the websites for the drugs and print of the applications.

One thing to also consider is having them fill a 3 month supply at a time. Some of DS's drugs when he was younger I needed to fill every 10 days and copays got a little spendy.

As far as the vest -- we thought we'd have to pay 20%; however, the vest company gave a $4000 rebate and the total cost for us on our statement of benefits was $550; however, we have yet to get a bill. It's my understanding that the vest companies will appeal and also have finance/payment plans.

Each state has insurance assistance programs for people who have limited incomes. It's my understanding they'll also pay a portion based on your income --- sliding fee scale, based on income. We haven't tried to apply because our social worker indicated we make too much money.
 
R

Ratatosk

Administrator
Staff member
I believe Genetech (Pulmozyme) and Tobi, both have assistance programs to help defray the costs of copays. First time I filled the tobi script our portion was $536 --- eek! Fortunately we have a $1000 out of pocket max on our meds per year and then we are just responsible for $15 per med. You can check the websites for the drugs and print of the applications.

One thing to also consider is having them fill a 3 month supply at a time. Some of DS's drugs when he was younger I needed to fill every 10 days and copays got a little spendy.

As far as the vest -- we thought we'd have to pay 20%; however, the vest company gave a $4000 rebate and the total cost for us on our statement of benefits was $550; however, we have yet to get a bill. It's my understanding that the vest companies will appeal and also have finance/payment plans.

Each state has insurance assistance programs for people who have limited incomes. It's my understanding they'll also pay a portion based on your income --- sliding fee scale, based on income. We haven't tried to apply because our social worker indicated we make too much money.
 
R

Ratatosk

Administrator
Staff member
I believe Genetech (Pulmozyme) and Tobi, both have assistance programs to help defray the costs of copays. First time I filled the tobi script our portion was $536 --- eek! Fortunately we have a $1000 out of pocket max on our meds per year and then we are just responsible for $15 per med. You can check the websites for the drugs and print of the applications.

One thing to also consider is having them fill a 3 month supply at a time. Some of DS's drugs when he was younger I needed to fill every 10 days and copays got a little spendy.

As far as the vest -- we thought we'd have to pay 20%; however, the vest company gave a $4000 rebate and the total cost for us on our statement of benefits was $550; however, we have yet to get a bill. It's my understanding that the vest companies will appeal and also have finance/payment plans.

Each state has insurance assistance programs for people who have limited incomes. It's my understanding they'll also pay a portion based on your income --- sliding fee scale, based on income. We haven't tried to apply because our social worker indicated we make too much money.
 
M

mum2kj

New member
Go Into the newly diagnosed forum, I have bumped up the assistance threads. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mum2kj

New member
Go Into the newly diagnosed forum, I have bumped up the assistance threads. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mum2kj

New member
Go Into the newly diagnosed forum, I have bumped up the assistance threads. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome to the site <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

babycakes

New member
Is it possible for you to move???

We are fortunate to live in a place where all CF meds are paid for by the gov't.
It's ironic really ... about a month before our child was dx we were planning to move. We even took a holiday there to check it out. But after finding out that meds are paid here and not there... We are staying put.
 
B

babycakes

New member
Is it possible for you to move???

We are fortunate to live in a place where all CF meds are paid for by the gov't.
It's ironic really ... about a month before our child was dx we were planning to move. We even took a holiday there to check it out. But after finding out that meds are paid here and not there... We are staying put.
 
B

babycakes

New member
Is it possible for you to move???

We are fortunate to live in a place where all CF meds are paid for by the gov't.
It's ironic really ... about a month before our child was dx we were planning to move. We even took a holiday there to check it out. But after finding out that meds are paid here and not there... We are staying put.
 
M

Marksmom

New member
still new at this site thing, but if you are in the US contact your local department of family services , Ohio has the Bureau for children with medical handicaps which is somewhat income based but also based on what your insurance pays or not. Other states might have a progrma like this. you can make a decent living but if your health insurance stinks or has high deductible, BCMH becomes your child ssecondary insurance but only for the allowed diseases.
 
M

Marksmom

New member
still new at this site thing, but if you are in the US contact your local department of family services , Ohio has the Bureau for children with medical handicaps which is somewhat income based but also based on what your insurance pays or not. Other states might have a progrma like this. you can make a decent living but if your health insurance stinks or has high deductible, BCMH becomes your child ssecondary insurance but only for the allowed diseases.
 
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