Medicine costs
- Thread starter Dowling
- Start date
We don't pay anything for Creon (enzymes) right now, because there is a co-pay assistance program for the first couple of years. (After that, we'll pay $30/month.) Creon isn't the only enzyme with a program. Ask your clinic to get you enrolled. You get co-pay coverage for the first couple of years, free vitamins, and free nutritional products every month.
We pay $30/month for pulmozyme, although there is also a co-pay assistance program for that, which keeps the cost down to $30 regardless of your insurance copays, I believe. (I think it kicks in to help if your insurance copay is greater than $30 to start to knock your payment down to $30, and if you pay $30 or less, then it's on you.) You have to register for it every year, but it's great since most CF-ers are on pulmozyme even as infants.
We pay $40/month for albuterol (our insurance copay), $50/month for reflux medicine (our insurance copay), and $15/month for an appetite stimulant (our insurance copay).
We get our CF vitamins (Vitamax) free through the Creon Cares program. (Otherwise, it would be about $25 for a 90-day supply for an infant.)
Vitamin D drops (D-vi-sol) costs about $8 for a month+ from Target or WalMart.
MiraLax is pretty expensive (about $25 for a bottle usually), but at Costco, you can get 2 bottles for under $30, which saves a lot of money and makes the Costco membership worth it on its own.
That's it for the "normal" cf stuff for us.
Our son is on a couple of other things because we're trying to get his weight up without going the surgical route, so that increases our expenses. If we'd agree to a g-tube, though, then our insurance would cover most of this:
MCT oil ($60 for a bottle, which lasts 6-8 weeks) + duocal ($30/can, which lasts about 3 weeks for us) + $260 for a month of Pediasure Peptide (we also have a picky eater who doesn't like sweet, so we have to buy this crazy expensive drink for him since it's unflavored.)
We pay $30/month for pulmozyme, although there is also a co-pay assistance program for that, which keeps the cost down to $30 regardless of your insurance copays, I believe. (I think it kicks in to help if your insurance copay is greater than $30 to start to knock your payment down to $30, and if you pay $30 or less, then it's on you.) You have to register for it every year, but it's great since most CF-ers are on pulmozyme even as infants.
We pay $40/month for albuterol (our insurance copay), $50/month for reflux medicine (our insurance copay), and $15/month for an appetite stimulant (our insurance copay).
We get our CF vitamins (Vitamax) free through the Creon Cares program. (Otherwise, it would be about $25 for a 90-day supply for an infant.)
Vitamin D drops (D-vi-sol) costs about $8 for a month+ from Target or WalMart.
MiraLax is pretty expensive (about $25 for a bottle usually), but at Costco, you can get 2 bottles for under $30, which saves a lot of money and makes the Costco membership worth it on its own.
That's it for the "normal" cf stuff for us.
Our son is on a couple of other things because we're trying to get his weight up without going the surgical route, so that increases our expenses. If we'd agree to a g-tube, though, then our insurance would cover most of this:
MCT oil ($60 for a bottle, which lasts 6-8 weeks) + duocal ($30/can, which lasts about 3 weeks for us) + $260 for a month of Pediasure Peptide (we also have a picky eater who doesn't like sweet, so we have to buy this crazy expensive drink for him since it's unflavored.)
Aboveallislove
Super Moderator
A few thoughts: Check your insurance plans and see what the prescription offerings are. You should be able to switch within so many weeks/days of birth. We had one plan that was slightly more that offered mail order prescriptions at a much better rate--$70 for 3 months versus $700 for one month co-pay. Also talk to the social worker. Our state has a "insurance" program for CF which covers all co-pays. Look into having the medical savings account so at least co-pays are coming being paid with "tax free $". And as poser above mentioned many pharma companies have co-pay assistance--social worker and pharmacy canhelp. We found a great pharmacy which told us about those before i discovered the mail order option. So see if you can find a helpful pharmacist who might help by contacting the pharma reps for you to see re assistance. hugs.
Illinois isn't great with help, but buying the Creon, pulmozyme, and vitamins are the most important at this stage for CF, and for the first two years, you can get all of it for $30/month. (Pulmozyme's copay help goes longer than 2 years, and I've heard that Creon sometimes offers to go longer based on financial eligibility, but don't quote me on that.) (For us, buying Creon with our 3-month pharmacy isn't a good deal, since we'd end up having to buy the vitamins instead of getting them for free.)
The dietary stuff is what it is. We could have gone the g-tube route, which is what our CF team wanted, but it's not what we wanted. If we had, all of the stuff we pay a lot for would have been covered by our insurance. But, our kid just won't eat. That's not necessarily a CF thing... it's an us thing. We might be having these problems even if CF didn't exist in him.
In terms of money, my husband and I don't eat as well anymore, but it's worth it to keep our son going.
The dietary stuff is what it is. We could have gone the g-tube route, which is what our CF team wanted, but it's not what we wanted. If we had, all of the stuff we pay a lot for would have been covered by our insurance. But, our kid just won't eat. That's not necessarily a CF thing... it's an us thing. We might be having these problems even if CF didn't exist in him.
In terms of money, my husband and I don't eat as well anymore, but it's worth it to keep our son going.
Depends upon the type of insurance. We have bcbs and have to pay 20% copay, plus either a $15 copay for a one month supply or a $30 copay for a 2-3 month supply. Once we reach a $1000 out of pocket maximum then we just have to pay the $15 or $30 copays. DH and I both have flexible spending accounts through our jobs, so I flex out about $2,000 pretax for medical expenses and then another amount for daycare.
IT was a bit of a shock the first time I bought tobi or pulmozyme, but I'm aware of it ahead of time and know that by February or March we've pretty much met our out of pocket max.
THere are also programs with tobi, pulmozyme that offer copay assistance. We're not financially eligible anymore, but if the copay was larger than $25 for Tobi, the drug company would cover it. We are on the creon program in which we get nutritional products -- juice, insure or power bars as well as vitamins provided we submit our receipts and their form every 3 months.
IT was a bit of a shock the first time I bought tobi or pulmozyme, but I'm aware of it ahead of time and know that by February or March we've pretty much met our out of pocket max.
THere are also programs with tobi, pulmozyme that offer copay assistance. We're not financially eligible anymore, but if the copay was larger than $25 for Tobi, the drug company would cover it. We are on the creon program in which we get nutritional products -- juice, insure or power bars as well as vitamins provided we submit our receipts and their form every 3 months.
I agree with everyone. Look into getting on the assistance programs, they really do save you a fortune. It will be hard at first, but before long it will just be another bill that you will become use to paying...kinda like a utility bill. It is overwhelming at first though!! Hang in there 
Oh, and another note... with Creon cares (and maybe the other enzymes), you get to choose one free formula or dietary supplement a month. If you're using formula, they offer 4 cans of Similac Advance a month for free. And if you're not, you're eventually going to probably use Pediasure and they usually send stuff that doesn't expire for at least 6 months. So, we started asking for it when our son was about 6 months old, and we had a nice supply when he was switched over at 12 months. (Of course, he hates it, so it didn't work, but most people would be able to use the nice stash we had built up.)
S
savannahs mom
Guest
BCMH has been a god send for our family, we are middle income and they cover most of our co-pay but mostly with the doctor visits and hospital stays. Our insurance is outrageous so every little bit helps. Good luck and stay strong.
CrisDopher
New member
CF expenses are high, that's for sure. Even with good insurance, where I hit my "catastrophic cap" each year about October or November, there's still a lot that insurance doesn't quite cover in terms of office visits, clinics, labs, etc. Not to mention the cost of transportation to all the appointments. It adds up. And I don't make a lot to begin with. But I live frugally.
I'm not cooking steaks every night, that's for sure. Chicken and rice is nutritious and cheap. Luckily, I also like fried liver very much. I prefer the generic brands of cereal over the name brands because they hold together better in milk. Soda enters my house maybe twice a year - as a mixer when I have friends over. That is an easily cut out expense.
Similarly, I only drink socially - and only every couple of weeks. If I put a six-pack of Guinness in my fridge, it'll last three to six months. I don't bother buying junk food - or empty calorie foods, rather. (I'm sure a little more chips-n-dip at night would help my weight!).
I see a lot of live entertainment, but rarely on my own dime. I'm in the field so get a lot of comps. Outside of those -- well, I can't afford the shows on my budget. In a similar vein, I may go to the movies maybe 3-4 times a year. I typically don't see a movie until it's available on TV or as a download. Netflix et al is WAY cheaper than going to the movies! I do admit to a cable subscription, but no premium channels.
I've cut way back on my coffee over the last year. I'm down to one purchased cup per day (and one made at home). Those savings really add up.
I don't but crap. I'm talking about all that plastic crap we fill our lives with. While I have STUFF, I have carefully considered my purchases for longevity and "do I really need this". Most of my non-routine expenses these days are for running or bicycling. It does take some money to keep up with those activities, especially if I want to join in on long rides or group runs, but I consider that all money well spent towards my health.
Sorry....that got a bit long. I want you to know you're not the only one to feel a crunch. You will find ways to cut out expenses that you used to consider necessary, but realize aren't really. And you'll find ways to maximize the value of what you have to buy.
I'm not cooking steaks every night, that's for sure. Chicken and rice is nutritious and cheap. Luckily, I also like fried liver very much.
I prefer the generic brands of cereal over the name brands because they hold together better in milk. Soda enters my house maybe twice a year - as a mixer when I have friends over. That is an easily cut out expense. Similarly, I only drink socially - and only every couple of weeks. If I put a six-pack of Guinness in my fridge, it'll last three to six months. I don't bother buying junk food - or empty calorie foods, rather. (I'm sure a little more chips-n-dip at night would help my weight!).
I see a lot of live entertainment, but rarely on my own dime. I'm in the field so get a lot of comps. Outside of those -- well, I can't afford the shows on my budget. In a similar vein, I may go to the movies maybe 3-4 times a year. I typically don't see a movie until it's available on TV or as a download. Netflix et al is WAY cheaper than going to the movies! I do admit to a cable subscription, but no premium channels.
I've cut way back on my coffee over the last year. I'm down to one purchased cup per day (and one made at home). Those savings really add up.
I don't but crap. I'm talking about all that plastic crap we fill our lives with. While I have STUFF, I have carefully considered my purchases for longevity and "do I really need this". Most of my non-routine expenses these days are for running or bicycling. It does take some money to keep up with those activities, especially if I want to join in on long rides or group runs, but I consider that all money well spent towards my health.
Sorry....that got a bit long. I want you to know you're not the only one to feel a crunch. You will find ways to cut out expenses that you used to consider necessary, but realize aren't really. And you'll find ways to maximize the value of what you have to buy.
S
savannahs mom
Guest
Bureau for children with medical handicaps
S
savannahs mom
Guest
Bureau for children with medical handicaps. It is a program where you make to much money for medicaid and some of those programs.
Hi Dowling,
I think you've gotten some good advice so far. Someone mentioned the Cystic Fibrosis Patient Assistance Foundation. My personal advice would be to start there. If you go to http://www.cfpaf.org/ there is a screening tool on their homepage. It asks a few really simple questions and tells you whether or not you would be eligible. If memory serves correct you can make up to 400% of the federal poverty level and still be eligible. For example, for my family size of 3 we can make over $70,000 annually and still qualify. This is much more generous than most state or federal programs (ie medicaid and the like) which we don't come close to qualifying for. If the screening tool shows you are eligible you can apply online or print the application and mail it in. The CFPAF picks up my copays of Pulmozyme, Cayston, Hypertonic Saline, and regular .9% saline. So I currently pay nothing out of pocket for these. It would also cover my enzymes but I'm currently not taking any. You should also feel free to call them with any questions, they have been super helpful to me. When you first apply they will also give you information about other assistance programs and may actually have you apply with them first. But if you do not qualify for the other programs, or they still leave you with a copay, the CFPAF will pick up it. They can also help if you have a prescription deductible at the beginning of the year. For example we have a $3,300 prescription deductible, so in January I would have had to have paid the full price of my prescriptions out of pocket. However, the CFPAF picked it up for me! Pretty amazing and I am SO beyond thankful.
Sorry, now I feel that I have rambled. Please ask if you have any questions about what I have posted.
Good luck to you and take care,
Autumn
I think you've gotten some good advice so far. Someone mentioned the Cystic Fibrosis Patient Assistance Foundation. My personal advice would be to start there. If you go to http://www.cfpaf.org/ there is a screening tool on their homepage. It asks a few really simple questions and tells you whether or not you would be eligible. If memory serves correct you can make up to 400% of the federal poverty level and still be eligible. For example, for my family size of 3 we can make over $70,000 annually and still qualify. This is much more generous than most state or federal programs (ie medicaid and the like) which we don't come close to qualifying for. If the screening tool shows you are eligible you can apply online or print the application and mail it in. The CFPAF picks up my copays of Pulmozyme, Cayston, Hypertonic Saline, and regular .9% saline. So I currently pay nothing out of pocket for these. It would also cover my enzymes but I'm currently not taking any. You should also feel free to call them with any questions, they have been super helpful to me. When you first apply they will also give you information about other assistance programs and may actually have you apply with them first. But if you do not qualify for the other programs, or they still leave you with a copay, the CFPAF will pick up it. They can also help if you have a prescription deductible at the beginning of the year. For example we have a $3,300 prescription deductible, so in January I would have had to have paid the full price of my prescriptions out of pocket. However, the CFPAF picked it up for me! Pretty amazing and I am SO beyond thankful.
Sorry, now I feel that I have rambled. Please ask if you have any questions about what I have posted.
Good luck to you and take care,
Autumn
L
liveinhope
Guest
Try shopping for meds in canada
I was able to reduce our prescription costs by switching to mail order for all long term meds. I get a written 30 day prescription to start a new medicine and take it to the local pharmacy if they have the medicine. At the same time I have the doctor send a 90 day prescription to mail order.
Best wishes
Best wishes