Two questions re: vest & Ultrase enzymes

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carrierae21

New member
My dd got her vest when she was a little over a year... The magic number at our clinic was 20 inches. She does really well with it, we've never really had any issues. Enzymes- she takes Creon, we started with 5's (they are 6's now) and now she takes the 12's. Our docs write the script for extra (about 60/month) and we are also able to stockpile them. My pharmacy/insurance doesn't really enforce the every 30 days rule so I can get them after about 3 weeks. I also stockpile the TOBI and pulmozyme b/c my copays are a little ridiculous at the beginning of the year. I have to pay percentages until I reach my max of $1500, I pay 25% of Creon and 40% of the pulmozyme and TOBI and then I don't pay anything for the rest of the year. Needless to say, we hit our decuctable pretty much immediately! It's a pain in the beginning of the year and then it's great b/c we can get everything/anything filled (early) and there's no copay.
 
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2girls

New member
Carrie - Are you aware of the Patient Access Network Foundation? We applied and got a $5,000 grant to cover Jack's pulmozyme for the year. My co-pay is only $100 a month so we definitely don't need $5,000, but I am told they just put what we don't use back in the pot at the end of the year. It is definitely worth checking into if you haven't already. They even went back and reimbursed me for the prior months that I had paid out of pocket for.

I hear ya on the out-of-pocket - we met Jack's by February this year when he was hospitalized for 7 days! We just make payments to the hospital and wherever else we need to - positive note, we didn't have to pay anything for our vest!!!
 
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2girls

New member
Carrie - Are you aware of the Patient Access Network Foundation? We applied and got a $5,000 grant to cover Jack's pulmozyme for the year. My co-pay is only $100 a month so we definitely don't need $5,000, but I am told they just put what we don't use back in the pot at the end of the year. It is definitely worth checking into if you haven't already. They even went back and reimbursed me for the prior months that I had paid out of pocket for.

I hear ya on the out-of-pocket - we met Jack's by February this year when he was hospitalized for 7 days! We just make payments to the hospital and wherever else we need to - positive note, we didn't have to pay anything for our vest!!!
 
2

2girls

New member
Carrie - Are you aware of the Patient Access Network Foundation? We applied and got a $5,000 grant to cover Jack's pulmozyme for the year. My co-pay is only $100 a month so we definitely don't need $5,000, but I am told they just put what we don't use back in the pot at the end of the year. It is definitely worth checking into if you haven't already. They even went back and reimbursed me for the prior months that I had paid out of pocket for.
<br />
<br />I hear ya on the out-of-pocket - we met Jack's by February this year when he was hospitalized for 7 days! We just make payments to the hospital and wherever else we need to - positive note, we didn't have to pay anything for our vest!!!
 
C

carrierae21

New member
I have heard about the PAN but I think the pharmacy that we would have to use to qualify would be out of network, thus = an even higher percentage we would have to pay. I have some info on it and I will definately look into it, but I just don't have high hopes!
 
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carrierae21

New member
I have heard about the PAN but I think the pharmacy that we would have to use to qualify would be out of network, thus = an even higher percentage we would have to pay. I have some info on it and I will definately look into it, but I just don't have high hopes!
 
C

carrierae21

New member
I have heard about the PAN but I think the pharmacy that we would have to use to qualify would be out of network, thus = an even higher percentage we would have to pay. I have some info on it and I will definately look into it, but I just don't have high hopes!
 
2

2girls

New member
It might not matter if you have a higher price because the idea of PAN is that they take care of the entire cost - at least that is what is happening for us. My husband and I both work and have decent incomes so we even qualified, which was awesome. I can only use it toward Pulm, but I think it also worked for tobi - we just aren't on it.
 
2

2girls

New member
It might not matter if you have a higher price because the idea of PAN is that they take care of the entire cost - at least that is what is happening for us. My husband and I both work and have decent incomes so we even qualified, which was awesome. I can only use it toward Pulm, but I think it also worked for tobi - we just aren't on it.
 
2

2girls

New member
It might not matter if you have a higher price because the idea of PAN is that they take care of the entire cost - at least that is what is happening for us. My husband and I both work and have decent incomes so we even qualified, which was awesome. I can only use it toward Pulm, but I think it also worked for tobi - we just aren't on it.
 
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zaj1139

New member
Just wondering if anyone has tried this yet or what the difference is between it and creon?:
The CF Foundation has learned that the pancreatic enzyme product Pancrease will be available in limited supply at pharmacies around the country until an updated formula called PancreazeTM is made available this summer.
 
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zaj1139

New member
Just wondering if anyone has tried this yet or what the difference is between it and creon?:
The CF Foundation has learned that the pancreatic enzyme product Pancrease will be available in limited supply at pharmacies around the country until an updated formula called PancreazeTM is made available this summer.
 
Z

zaj1139

New member
Just wondering if anyone has tried this yet or what the difference is between it and creon?:
<br />The CF Foundation has learned that the pancreatic enzyme product Pancrease will be available in limited supply at pharmacies around the country until an updated formula called PancreazeTM is made available this summer.
 
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