After TX: Medication expenses

jfarel

New member
I have insurance right now, not sure if I will have when I am transplanted as I am still not sure when I am going back to work. I have heard that even w/ insurance covering the meds, the expenses for medications after transplant exceed 1,100 dollars per month.

Having CF my whole life I have taken tons and tons of medications but insurance has always made paying for them doable. I am trying to understand why after tranpslant the medications are so much more expensive. Is it more medications or is that your insurance doesn't cover them? Who would have thought things could be more expensvie than tobi and pulmozyme.

What's the deal?
 

jfarel

New member
I have insurance right now, not sure if I will have when I am transplanted as I am still not sure when I am going back to work. I have heard that even w/ insurance covering the meds, the expenses for medications after transplant exceed 1,100 dollars per month.

Having CF my whole life I have taken tons and tons of medications but insurance has always made paying for them doable. I am trying to understand why after tranpslant the medications are so much more expensive. Is it more medications or is that your insurance doesn't cover them? Who would have thought things could be more expensvie than tobi and pulmozyme.

What's the deal?
 

jfarel

New member
I have insurance right now, not sure if I will have when I am transplanted as I am still not sure when I am going back to work. I have heard that even w/ insurance covering the meds, the expenses for medications after transplant exceed 1,100 dollars per month.

Having CF my whole life I have taken tons and tons of medications but insurance has always made paying for them doable. I am trying to understand why after tranpslant the medications are so much more expensive. Is it more medications or is that your insurance doesn't cover them? Who would have thought things could be more expensvie than tobi and pulmozyme.

What's the deal?
 

jfarel

New member
I have insurance right now, not sure if I will have when I am transplanted as I am still not sure when I am going back to work. I have heard that even w/ insurance covering the meds, the expenses for medications after transplant exceed 1,100 dollars per month.

Having CF my whole life I have taken tons and tons of medications but insurance has always made paying for them doable. I am trying to understand why after tranpslant the medications are so much more expensive. Is it more medications or is that your insurance doesn't cover them? Who would have thought things could be more expensvie than tobi and pulmozyme.

What's the deal?
 

jfarel

New member
I have insurance right now, not sure if I will have when I am transplanted as I am still not sure when I am going back to work. I have heard that even w/ insurance covering the meds, the expenses for medications after transplant exceed 1,100 dollars per month.

Having CF my whole life I have taken tons and tons of medications but insurance has always made paying for them doable. I am trying to understand why after tranpslant the medications are so much more expensive. Is it more medications or is that your insurance doesn't cover them? Who would have thought things could be more expensvie than tobi and pulmozyme.

What's the deal?
 

Skye

New member
Holy cow, I certainly hope that is not true. I can't imagine how anyone could make a blanket statement like that unless they reviewed your coverage and knew what your co-pays were etc. Maybe I am living in a fairy tale land. I would think that if they are over $1,000/month for anyone and everyone that every center would tell you that within the first few communications with them. I think it is highly individual and based on your personal coverage. Yes, you are correct, we have some very specialized meds for CF that we pay for regularly. A co-pay is a co-pay. There are many expensive drugs that we will be knocking off the list: Tobi, pulmozyme, zithromax, xoponex, oral abx, HS. I certainly hope you are wrong cause you have FREAKED me out<img src="i/expressions/face-icon-small-smile.gif" border="0"> The list of possible post-transplant meds did not look any more extensive to me than what I already do. Also, they are pills and don't require expensive medical equipment to deliver them. No O2! I just looked something up on one of the hospital sites and it said expenses can be as much as 500 for the first few months and 250-500/month thereafter. I know I haven't helped much in answering your question, sorry! Hey, by the way, you are doing a great job in asking questions and trying to wrap your head around this whole tx thing. Good for you!
 

Skye

New member
Holy cow, I certainly hope that is not true. I can't imagine how anyone could make a blanket statement like that unless they reviewed your coverage and knew what your co-pays were etc. Maybe I am living in a fairy tale land. I would think that if they are over $1,000/month for anyone and everyone that every center would tell you that within the first few communications with them. I think it is highly individual and based on your personal coverage. Yes, you are correct, we have some very specialized meds for CF that we pay for regularly. A co-pay is a co-pay. There are many expensive drugs that we will be knocking off the list: Tobi, pulmozyme, zithromax, xoponex, oral abx, HS. I certainly hope you are wrong cause you have FREAKED me out<img src="i/expressions/face-icon-small-smile.gif" border="0"> The list of possible post-transplant meds did not look any more extensive to me than what I already do. Also, they are pills and don't require expensive medical equipment to deliver them. No O2! I just looked something up on one of the hospital sites and it said expenses can be as much as 500 for the first few months and 250-500/month thereafter. I know I haven't helped much in answering your question, sorry! Hey, by the way, you are doing a great job in asking questions and trying to wrap your head around this whole tx thing. Good for you!
 

Skye

New member
Holy cow, I certainly hope that is not true. I can't imagine how anyone could make a blanket statement like that unless they reviewed your coverage and knew what your co-pays were etc. Maybe I am living in a fairy tale land. I would think that if they are over $1,000/month for anyone and everyone that every center would tell you that within the first few communications with them. I think it is highly individual and based on your personal coverage. Yes, you are correct, we have some very specialized meds for CF that we pay for regularly. A co-pay is a co-pay. There are many expensive drugs that we will be knocking off the list: Tobi, pulmozyme, zithromax, xoponex, oral abx, HS. I certainly hope you are wrong cause you have FREAKED me out<img src="i/expressions/face-icon-small-smile.gif" border="0"> The list of possible post-transplant meds did not look any more extensive to me than what I already do. Also, they are pills and don't require expensive medical equipment to deliver them. No O2! I just looked something up on one of the hospital sites and it said expenses can be as much as 500 for the first few months and 250-500/month thereafter. I know I haven't helped much in answering your question, sorry! Hey, by the way, you are doing a great job in asking questions and trying to wrap your head around this whole tx thing. Good for you!
 

Skye

New member
Holy cow, I certainly hope that is not true. I can't imagine how anyone could make a blanket statement like that unless they reviewed your coverage and knew what your co-pays were etc. Maybe I am living in a fairy tale land. I would think that if they are over $1,000/month for anyone and everyone that every center would tell you that within the first few communications with them. I think it is highly individual and based on your personal coverage. Yes, you are correct, we have some very specialized meds for CF that we pay for regularly. A co-pay is a co-pay. There are many expensive drugs that we will be knocking off the list: Tobi, pulmozyme, zithromax, xoponex, oral abx, HS. I certainly hope you are wrong cause you have FREAKED me out<img src="i/expressions/face-icon-small-smile.gif" border="0"> The list of possible post-transplant meds did not look any more extensive to me than what I already do. Also, they are pills and don't require expensive medical equipment to deliver them. No O2! I just looked something up on one of the hospital sites and it said expenses can be as much as 500 for the first few months and 250-500/month thereafter. I know I haven't helped much in answering your question, sorry! Hey, by the way, you are doing a great job in asking questions and trying to wrap your head around this whole tx thing. Good for you!
 

Skye

New member
Holy cow, I certainly hope that is not true. I can't imagine how anyone could make a blanket statement like that unless they reviewed your coverage and knew what your co-pays were etc. Maybe I am living in a fairy tale land. I would think that if they are over $1,000/month for anyone and everyone that every center would tell you that within the first few communications with them. I think it is highly individual and based on your personal coverage. Yes, you are correct, we have some very specialized meds for CF that we pay for regularly. A co-pay is a co-pay. There are many expensive drugs that we will be knocking off the list: Tobi, pulmozyme, zithromax, xoponex, oral abx, HS. I certainly hope you are wrong cause you have FREAKED me out<img src="i/expressions/face-icon-small-smile.gif" border="0"> The list of possible post-transplant meds did not look any more extensive to me than what I already do. Also, they are pills and don't require expensive medical equipment to deliver them. No O2! I just looked something up on one of the hospital sites and it said expenses can be as much as 500 for the first few months and 250-500/month thereafter. I know I haven't helped much in answering your question, sorry! Hey, by the way, you are doing a great job in asking questions and trying to wrap your head around this whole tx thing. Good for you!
 

Skye

New member
I also forgot to add that I know a couple of families that have daughters who are post-transplant. Both families have average jobs. Mom of one is a secretary and the other is a nurse. They are obviously not on medicaid. I can't imagine that they could continually afford a chunk like that every month. I of course do not know at all since I have not been through it, but that sounds like a pretty high number.
 

Skye

New member
I also forgot to add that I know a couple of families that have daughters who are post-transplant. Both families have average jobs. Mom of one is a secretary and the other is a nurse. They are obviously not on medicaid. I can't imagine that they could continually afford a chunk like that every month. I of course do not know at all since I have not been through it, but that sounds like a pretty high number.
 

Skye

New member
I also forgot to add that I know a couple of families that have daughters who are post-transplant. Both families have average jobs. Mom of one is a secretary and the other is a nurse. They are obviously not on medicaid. I can't imagine that they could continually afford a chunk like that every month. I of course do not know at all since I have not been through it, but that sounds like a pretty high number.
 

Skye

New member
I also forgot to add that I know a couple of families that have daughters who are post-transplant. Both families have average jobs. Mom of one is a secretary and the other is a nurse. They are obviously not on medicaid. I can't imagine that they could continually afford a chunk like that every month. I of course do not know at all since I have not been through it, but that sounds like a pretty high number.
 

Skye

New member
I also forgot to add that I know a couple of families that have daughters who are post-transplant. Both families have average jobs. Mom of one is a secretary and the other is a nurse. They are obviously not on medicaid. I can't imagine that they could continually afford a chunk like that every month. I of course do not know at all since I have not been through it, but that sounds like a pretty high number.
 

coltsfan715

New member
Hey John,

I will try to give some info on this - but right now I am OVER insured if that is even possible. I have 3 insurances right now so I end up paying about 200 bucks a month for my copays and scripts. How I still have to pay I have no idea lol.


I think the expense comes in at the class of the drugs. Alot of the post transplant meds are higher classed drugs so the copays are 30+ instead of 10+ in many cases. I know that is how it is with my meds anyway.

There are some meds that you take temporarily that are a few thousand dollars for a months supply (pre insurance). There are really only about 3-4 that you would end up taking long term probably so that is the bright side. It just depends on the meds you are taking and the length of time you need to be on them as to how much it would cost you in the long run.

Also something you could do is get a copy of your insurance companies formulary now. Even though you may not have them when you are transplanted it will be worth looking into at least. You can look through there and see what meds you will take and which of those will be covered or which ones will not be -- if any.

Also when you go to the evaluation or the transplant center ask them what meds you will take post transplant. Ask them the regimen that they stick too and write the meds down. Then ask them if there are alternatives to those meds in the event that your insurance will not cover those meds. You can then take your list of meds home and compare them to the formulary from you ins. company.

Also they SHOULD set you up with an appointment with a financial counselor at your center. If they don't you should ask for them too. That person can help you go over long term med costs and some other things you need to be prepared for financially.

Also if I only had my primary insurance I would probably have to pay out about $500 bucks a month right now. I know that is still alot but that is why we have done fundraising to help alleviate the cost of that when I do lose my secondary and terciary insurances.


Good Luck,
Lindsey
 

coltsfan715

New member
Hey John,

I will try to give some info on this - but right now I am OVER insured if that is even possible. I have 3 insurances right now so I end up paying about 200 bucks a month for my copays and scripts. How I still have to pay I have no idea lol.


I think the expense comes in at the class of the drugs. Alot of the post transplant meds are higher classed drugs so the copays are 30+ instead of 10+ in many cases. I know that is how it is with my meds anyway.

There are some meds that you take temporarily that are a few thousand dollars for a months supply (pre insurance). There are really only about 3-4 that you would end up taking long term probably so that is the bright side. It just depends on the meds you are taking and the length of time you need to be on them as to how much it would cost you in the long run.

Also something you could do is get a copy of your insurance companies formulary now. Even though you may not have them when you are transplanted it will be worth looking into at least. You can look through there and see what meds you will take and which of those will be covered or which ones will not be -- if any.

Also when you go to the evaluation or the transplant center ask them what meds you will take post transplant. Ask them the regimen that they stick too and write the meds down. Then ask them if there are alternatives to those meds in the event that your insurance will not cover those meds. You can then take your list of meds home and compare them to the formulary from you ins. company.

Also they SHOULD set you up with an appointment with a financial counselor at your center. If they don't you should ask for them too. That person can help you go over long term med costs and some other things you need to be prepared for financially.

Also if I only had my primary insurance I would probably have to pay out about $500 bucks a month right now. I know that is still alot but that is why we have done fundraising to help alleviate the cost of that when I do lose my secondary and terciary insurances.


Good Luck,
Lindsey
 

coltsfan715

New member
Hey John,

I will try to give some info on this - but right now I am OVER insured if that is even possible. I have 3 insurances right now so I end up paying about 200 bucks a month for my copays and scripts. How I still have to pay I have no idea lol.


I think the expense comes in at the class of the drugs. Alot of the post transplant meds are higher classed drugs so the copays are 30+ instead of 10+ in many cases. I know that is how it is with my meds anyway.

There are some meds that you take temporarily that are a few thousand dollars for a months supply (pre insurance). There are really only about 3-4 that you would end up taking long term probably so that is the bright side. It just depends on the meds you are taking and the length of time you need to be on them as to how much it would cost you in the long run.

Also something you could do is get a copy of your insurance companies formulary now. Even though you may not have them when you are transplanted it will be worth looking into at least. You can look through there and see what meds you will take and which of those will be covered or which ones will not be -- if any.

Also when you go to the evaluation or the transplant center ask them what meds you will take post transplant. Ask them the regimen that they stick too and write the meds down. Then ask them if there are alternatives to those meds in the event that your insurance will not cover those meds. You can then take your list of meds home and compare them to the formulary from you ins. company.

Also they SHOULD set you up with an appointment with a financial counselor at your center. If they don't you should ask for them too. That person can help you go over long term med costs and some other things you need to be prepared for financially.

Also if I only had my primary insurance I would probably have to pay out about $500 bucks a month right now. I know that is still alot but that is why we have done fundraising to help alleviate the cost of that when I do lose my secondary and terciary insurances.


Good Luck,
Lindsey
 

coltsfan715

New member
Hey John,

I will try to give some info on this - but right now I am OVER insured if that is even possible. I have 3 insurances right now so I end up paying about 200 bucks a month for my copays and scripts. How I still have to pay I have no idea lol.


I think the expense comes in at the class of the drugs. Alot of the post transplant meds are higher classed drugs so the copays are 30+ instead of 10+ in many cases. I know that is how it is with my meds anyway.

There are some meds that you take temporarily that are a few thousand dollars for a months supply (pre insurance). There are really only about 3-4 that you would end up taking long term probably so that is the bright side. It just depends on the meds you are taking and the length of time you need to be on them as to how much it would cost you in the long run.

Also something you could do is get a copy of your insurance companies formulary now. Even though you may not have them when you are transplanted it will be worth looking into at least. You can look through there and see what meds you will take and which of those will be covered or which ones will not be -- if any.

Also when you go to the evaluation or the transplant center ask them what meds you will take post transplant. Ask them the regimen that they stick too and write the meds down. Then ask them if there are alternatives to those meds in the event that your insurance will not cover those meds. You can then take your list of meds home and compare them to the formulary from you ins. company.

Also they SHOULD set you up with an appointment with a financial counselor at your center. If they don't you should ask for them too. That person can help you go over long term med costs and some other things you need to be prepared for financially.

Also if I only had my primary insurance I would probably have to pay out about $500 bucks a month right now. I know that is still alot but that is why we have done fundraising to help alleviate the cost of that when I do lose my secondary and terciary insurances.


Good Luck,
Lindsey
 

coltsfan715

New member
Hey John,

I will try to give some info on this - but right now I am OVER insured if that is even possible. I have 3 insurances right now so I end up paying about 200 bucks a month for my copays and scripts. How I still have to pay I have no idea lol.


I think the expense comes in at the class of the drugs. Alot of the post transplant meds are higher classed drugs so the copays are 30+ instead of 10+ in many cases. I know that is how it is with my meds anyway.

There are some meds that you take temporarily that are a few thousand dollars for a months supply (pre insurance). There are really only about 3-4 that you would end up taking long term probably so that is the bright side. It just depends on the meds you are taking and the length of time you need to be on them as to how much it would cost you in the long run.

Also something you could do is get a copy of your insurance companies formulary now. Even though you may not have them when you are transplanted it will be worth looking into at least. You can look through there and see what meds you will take and which of those will be covered or which ones will not be -- if any.

Also when you go to the evaluation or the transplant center ask them what meds you will take post transplant. Ask them the regimen that they stick too and write the meds down. Then ask them if there are alternatives to those meds in the event that your insurance will not cover those meds. You can then take your list of meds home and compare them to the formulary from you ins. company.

Also they SHOULD set you up with an appointment with a financial counselor at your center. If they don't you should ask for them too. That person can help you go over long term med costs and some other things you need to be prepared for financially.

Also if I only had my primary insurance I would probably have to pay out about $500 bucks a month right now. I know that is still alot but that is why we have done fundraising to help alleviate the cost of that when I do lose my secondary and terciary insurances.


Good Luck,
Lindsey
 
Top