Writing a paper on CF, Need some info

[anonymous]

Hi there

I am a member of Kin Canada and in an attempt to raise local awareness in my university, I am writing a paper on CF. I am trying to put a financial burden aspect on it. I know of the personal strain as well as the physical strain as I have been working to raise money for research with Kin Canada. I have found a site that lists the various medications used and i am just wondering what ones some people use and how many you have to take each day. The costs have shocked me, I guess in part being Canadian and the help that many provincial governments offer families of CF patients has sheilded me to the costs that can pile up. If you dont wish to list how many pills and what pills you take could you possible just list what the monthly costs are to you and how many pills in total you take each day. Thanks for you help!!

Melanie

 

[anonymous]

Hi there

I am a member of Kin Canada and in an attempt to raise local awareness in my university, I am writing a paper on CF. I am trying to put a financial burden aspect on it. I know of the personal strain as well as the physical strain as I have been working to raise money for research with Kin Canada. I have found a site that lists the various medications used and i am just wondering what ones some people use and how many you have to take each day. The costs have shocked me, I guess in part being Canadian and the help that many provincial governments offer families of CF patients has sheilded me to the costs that can pile up. If you dont wish to list how many pills and what pills you take could you possible just list what the monthly costs are to you and how many pills in total you take each day. Thanks for you help!!

Melanie

 

[anonymous]

I do not have a problem giving you this info but i would rather you email me so i can give this to you.adrenalineo7@aol.com

 

[anonymous]

I do not have a problem giving you this info but i would rather you email me so i can give this to you.adrenalineo7@aol.com

 

[anonymous]

Melanie, in doing your research you might also want to consider the food costs to someone with CF. Those with CF need more calories and protein than those without, just to maintain weight (and even at that, most are UNDER weight). I have a file I can email you that has all the food records for my husband (who has CF). We keep them so we can deduct them on taxes. Federal laws allow those expenses above and beyond what it would cost someone without CF of the same age, weight and height, to be deductible for someone with CF. Every year our "food expenses directly related to CF" total $7000-9000 (just food, not anything else). And yes, although it is deductible, most people with CF make little or no money, so even though we can deduct it as a medical expense, there is no tax CREDIT involved. You can only get back what you paid towards federal taxes. If you are interested, please list your email on a post and I will send it to you.

Julie

 

[anonymous]

Melanie, in doing your research you might also want to consider the food costs to someone with CF. Those with CF need more calories and protein than those without, just to maintain weight (and even at that, most are UNDER weight). I have a file I can email you that has all the food records for my husband (who has CF). We keep them so we can deduct them on taxes. Federal laws allow those expenses above and beyond what it would cost someone without CF of the same age, weight and height, to be deductible for someone with CF. Every year our "food expenses directly related to CF" total $7000-9000 (just food, not anything else). And yes, although it is deductible, most people with CF make little or no money, so even though we can deduct it as a medical expense, there is no tax CREDIT involved. You can only get back what you paid towards federal taxes. If you are interested, please list your email on a post and I will send it to you.

Julie

 

[HollyCatheryn]

I'm taking TOBI twice a day, one month on - one month off throughout the year, which I believe comes to about $1,800. Then there's Pulmozyme once a day every month and that's about $1,000. Then there's the enzymes that can cost about $1,000 (I take 3 Ultrase MT 20's with each meal and I eat about 5 meals). If you buy the Vest it costs $16,000 (well, it did when I got mine 6 years ago). My Zantac 300mg I get generic, so it's cheap, but I pay full price for my Prevacid 30mg $130. Then there's the supplements that cost about $200 a month. And the extra food, like another poster mentioned which costs us $200 a month. Then there's hospital and dr bill copays. We usually pay about $65 a month. I am having to buy insurance for myself out of pocket and that premium is $225 a month. Plus, my premium for Medicare which is $66. If I have to take any antibiotic it can add hundreds or thousands to that usual monthly total. Plus, then you need to figure in parking, gas, food, and highway tolls for any dr visit or hospital stay.  A one week hsopital stay can cost us $200 on top of the hospital stuff, just getting there and home and feeding my family. If you don't have a great social worker, family, and/or church life without that support can quickly become more than anyone can handle.

 

[HollyCatheryn]

I'm taking TOBI twice a day, one month on - one month off throughout the year, which I believe comes to about $1,800. Then there's Pulmozyme once a day every month and that's about $1,000. Then there's the enzymes that can cost about $1,000 (I take 3 Ultrase MT 20's with each meal and I eat about 5 meals). If you buy the Vest it costs $16,000 (well, it did when I got mine 6 years ago). My Zantac 300mg I get generic, so it's cheap, but I pay full price for my Prevacid 30mg $130. Then there's the supplements that cost about $200 a month. And the extra food, like another poster mentioned which costs us $200 a month. Then there's hospital and dr bill copays. We usually pay about $65 a month. I am having to buy insurance for myself out of pocket and that premium is $225 a month. Plus, my premium for Medicare which is $66. If I have to take any antibiotic it can add hundreds or thousands to that usual monthly total. Plus, then you need to figure in parking, gas, food, and highway tolls for any dr visit or hospital stay.  A one week hsopital stay can cost us $200 on top of the hospital stuff, just getting there and home and feeding my family. If you don't have a great social worker, family, and/or church life without that support can quickly become more than anyone can handle.

 

[anonymous]

In Ontario, we have OHIP (ontario heath insurance providers(i think that's what the "p" is for)), but basically as long as you live in ontarion you have heath insurance to cover the basics, but they have a CF program, so the only thing i have to pay for is my inhailers and my insurance pays for most of it and arizromycin, which my insurance only pays for one month supply, so i have to drive to Toronto every month to get more

Ashley 20 w/CF

 

[anonymous]

In Ontario, we have OHIP (ontario heath insurance providers(i think that's what the "p" is for)), but basically as long as you live in ontarion you have heath insurance to cover the basics, but they have a CF program, so the only thing i have to pay for is my inhailers and my insurance pays for most of it and arizromycin, which my insurance only pays for one month supply, so i have to drive to Toronto every month to get more

Ashley 20 w/CF

 

[cfgirl38]

Hi. Hollycatherine. I was paying all of that as well up until 2 years ago. A friend from my job told me her cf grandson was on this health care. Called" children's speical health care" Some people call it "crippled children's health care". Anyway I called the health dept in my town. They sent me papers and I applied. I live in Michigan. I was immediatly approved. I pay $20. a month. They pay all my prescriptions and copays for my cf dr. If I have to go to my md. Then I pay them. But it has saved me so much. So look into it. I do have a question though. Do you have to take zantac and prevacid daily. I just started getting the probs with my digestive system. So I am also on ultrase but lately think it's not working as well as when I started. I have took zantac but only when my belly starts to ache. Just curious! Thanks Eva 35w/ cf

 

[cfgirl38]

Hi. Hollycatherine. I was paying all of that as well up until 2 years ago. A friend from my job told me her cf grandson was on this health care. Called" children's speical health care" Some people call it "crippled children's health care". Anyway I called the health dept in my town. They sent me papers and I applied. I live in Michigan. I was immediatly approved. I pay $20. a month. They pay all my prescriptions and copays for my cf dr. If I have to go to my md. Then I pay them. But it has saved me so much. So look into it. I do have a question though. Do you have to take zantac and prevacid daily. I just started getting the probs with my digestive system. So I am also on ultrase but lately think it's not working as well as when I started. I have took zantac but only when my belly starts to ache. Just curious! Thanks Eva 35w/ cf

 

[cfgirl38]

Sorry I meant they pay ALL my prescriptions whether it's from my md or not. But I have to pay my dr copay if it's not my cf dr. Thanks Eva.

 

[cfgirl38]

Sorry I meant they pay ALL my prescriptions whether it's from my md or not. But I have to pay my dr copay if it's not my cf dr. Thanks Eva.

 

[NoDayButToday]

CF gets very expensive! We have a copay of at least $20 on each of my prescriptions, which total about 10-12 a month. Plus those things not covered by insurance- vitamins, calcium supplements, the high calorie food. Also like someone else mentioned, being in the hospital can be costly- the parking usually totals around $100, plus I tend to order a lot of take out from restaurants to supplement 'delicious' hospital food. Another thing I personally had never thought of until earlier this year- electricity costs. This past winter I was on oxygen, and having the machine on 24/7 made our electric bill shoot up. It's amazing how many costs can be traced back to CF when you think about it.

 

[NoDayButToday]

CF gets very expensive! We have a copay of at least $20 on each of my prescriptions, which total about 10-12 a month. Plus those things not covered by insurance- vitamins, calcium supplements, the high calorie food. Also like someone else mentioned, being in the hospital can be costly- the parking usually totals around $100, plus I tend to order a lot of take out from restaurants to supplement 'delicious' hospital food. Another thing I personally had never thought of until earlier this year- electricity costs. This past winter I was on oxygen, and having the machine on 24/7 made our electric bill shoot up. It's amazing how many costs can be traced back to CF when you think about it.

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>NoDayButToday</b></i><br>CF gets very expensive! We have a copay of at least $20 on each of my prescriptions, which total about 10-12 a month. Plus those things not covered by insurance- vitamins, calcium supplements, the high calorie food. Also like someone else mentioned, being in the hospital can be costly- the parking usually totals around $100, plus I tend to order a lot of take out from restaurants to supplement 'delicious' hospital food. Another thing I personally had never thought of until earlier this year- electricity costs. This past winter I was on oxygen, and having the machine on 24/7 made our electric bill shoot up. It's amazing how many costs can be traced back to CF when you think about it.<hr></blockquote>

yes i know the parking is unbelievable. when i am in the hospital for like 2 weeks my mom comes in every day and its about 8 dollars a day to park. add that up to all the times i am in there every few months plus doctors visits its outrageous. and yes we cant forget the delicious hospital food. i was in the hospital for a cleanout for 2 weeks last month and i lost 6 lbs. i went down to 88 lbs. they tried to tell me i need to eat more and i said well maybe if you had better food then i would eat more. im not a rich person that can fling money around 3 times a day for meals because you are incapable of making good food! i was like now its going to take even longer and now i have to work harder to get back that 6 lbs. thankfully i am getting a g-tube at the end of november. that might cut down on the stress of having to force feed myself all the time! oh and to the poster if you want to e-mail me with any questions about meds or anything else im at clashpunk10282@hotmail.com.

Nicole 22 CF <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>NoDayButToday</b></i><br>CF gets very expensive! We have a copay of at least $20 on each of my prescriptions, which total about 10-12 a month. Plus those things not covered by insurance- vitamins, calcium supplements, the high calorie food. Also like someone else mentioned, being in the hospital can be costly- the parking usually totals around $100, plus I tend to order a lot of take out from restaurants to supplement 'delicious' hospital food. Another thing I personally had never thought of until earlier this year- electricity costs. This past winter I was on oxygen, and having the machine on 24/7 made our electric bill shoot up. It's amazing how many costs can be traced back to CF when you think about it.<hr></blockquote>

yes i know the parking is unbelievable. when i am in the hospital for like 2 weeks my mom comes in every day and its about 8 dollars a day to park. add that up to all the times i am in there every few months plus doctors visits its outrageous. and yes we cant forget the delicious hospital food. i was in the hospital for a cleanout for 2 weeks last month and i lost 6 lbs. i went down to 88 lbs. they tried to tell me i need to eat more and i said well maybe if you had better food then i would eat more. im not a rich person that can fling money around 3 times a day for meals because you are incapable of making good food! i was like now its going to take even longer and now i have to work harder to get back that 6 lbs. thankfully i am getting a g-tube at the end of november. that might cut down on the stress of having to force feed myself all the time! oh and to the poster if you want to e-mail me with any questions about meds or anything else im at clashpunk10282@hotmail.com.

Nicole 22 CF <img src="i/expressions/heart.gif" border="0">

 

[kybert]

melanie, im in australia but i will give you some sort of figure anyway. medicines are very cheap here. basically anything that is bought from the hospital pharmacy is at a heavily subsidised price. 3.80 to about 25 each. but if its outside a pharmacy meds can range from 3.80 to 25 as well, but if its not on the pbs it can be anywhere from 25 to 200 each. 3.80 also only applies to people on health care cards or pensions which are becoming more and more hard to get for cf'ers. so each prescription will cost about 20 to 25 dollars for common medicines if not on a pension. although medicines are cheap nothing else is. food here is ridiculously expensive. i love meat, but i am avoiding it due to high costs. it costs 6 dollars just to get a nice steak. around 10 for a small raw whole chicken. 10 for 5 decent lamp cutlets. its more affordable to eat mcdonalds all the time. petrol is expensive too. it works out to be like 3.50 AUD a gallon when converted to gallons. we never pay parking at the hospital. i refuse to pay because the carpark is horrendous. private health insurance is expensive [about 50 or 60 a month for 'top' cover] and has little benefits but sometimes you need it because the public hospitals dont have what you need or you have to wait for years to get something that isnt cf related fixed. in that case you still have to pay alot of fees if you visit a private hospital or private doctor. that runs into the hundreds.

 

[kybert]

melanie, im in australia but i will give you some sort of figure anyway. medicines are very cheap here. basically anything that is bought from the hospital pharmacy is at a heavily subsidised price. 3.80 to about 25 each. but if its outside a pharmacy meds can range from 3.80 to 25 as well, but if its not on the pbs it can be anywhere from 25 to 200 each. 3.80 also only applies to people on health care cards or pensions which are becoming more and more hard to get for cf'ers. so each prescription will cost about 20 to 25 dollars for common medicines if not on a pension. although medicines are cheap nothing else is. food here is ridiculously expensive. i love meat, but i am avoiding it due to high costs. it costs 6 dollars just to get a nice steak. around 10 for a small raw whole chicken. 10 for 5 decent lamp cutlets. its more affordable to eat mcdonalds all the time. petrol is expensive too. it works out to be like 3.50 AUD a gallon when converted to gallons. we never pay parking at the hospital. i refuse to pay because the carpark is horrendous. private health insurance is expensive [about 50 or 60 a month for 'top' cover] and has little benefits but sometimes you need it because the public hospitals dont have what you need or you have to wait for years to get something that isnt cf related fixed. in that case you still have to pay alot of fees if you visit a private hospital or private doctor. that runs into the hundreds.