Vent - Cost of Meds

TestifyToLove

New member
No, but they let people in for work related reasons. And, since his original citizenship is India, he's got better access to enter some of the European nations. Most of Europe is desperate for workforce. If he goes to college and has a marketable skill, then yes he can search for jobs in nations with Socialized medicine. They will let him in, and working should give him access to the medical care system, but they won't necessarily give him citizenship.

I actually know some Hemophilia young adults who have moved into countries with socialized medicine for this reason, because at least under socialized medicine you can access the meds that keep you alive.

I'm really ticked at the US system. And, on this point, CF and Hemophilia are similiar. Both you can maintain on, but require access to life saving medication. Without those meds, you can die pretty quickly. But, here in the US when these children reach adulthood what options are available to them? Not nearly enough, not until they are so sick that the medications aren't going to be nearly as effective.

Another CF mom was telling me this spring that our state is starting to kick the CFers off state insurance and aren't counting CF as an automatic qualifier anymore. The stated reason is that with the increasing life expectancy, CF is transitioning to a chronic condition from a terminal condition. But, as she rightly pointed out, CF can only be a chronic condition IF you are very aggressive with treatment and constantly getting access to treatments, meds, doctors, etc. Take away the health insurance...and it goes right back to being terminal quickly because you have no resources to fight it with.

Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.
 

TestifyToLove

New member
No, but they let people in for work related reasons. And, since his original citizenship is India, he's got better access to enter some of the European nations. Most of Europe is desperate for workforce. If he goes to college and has a marketable skill, then yes he can search for jobs in nations with Socialized medicine. They will let him in, and working should give him access to the medical care system, but they won't necessarily give him citizenship.

I actually know some Hemophilia young adults who have moved into countries with socialized medicine for this reason, because at least under socialized medicine you can access the meds that keep you alive.

I'm really ticked at the US system. And, on this point, CF and Hemophilia are similiar. Both you can maintain on, but require access to life saving medication. Without those meds, you can die pretty quickly. But, here in the US when these children reach adulthood what options are available to them? Not nearly enough, not until they are so sick that the medications aren't going to be nearly as effective.

Another CF mom was telling me this spring that our state is starting to kick the CFers off state insurance and aren't counting CF as an automatic qualifier anymore. The stated reason is that with the increasing life expectancy, CF is transitioning to a chronic condition from a terminal condition. But, as she rightly pointed out, CF can only be a chronic condition IF you are very aggressive with treatment and constantly getting access to treatments, meds, doctors, etc. Take away the health insurance...and it goes right back to being terminal quickly because you have no resources to fight it with.

Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.
 

TestifyToLove

New member
No, but they let people in for work related reasons. And, since his original citizenship is India, he's got better access to enter some of the European nations. Most of Europe is desperate for workforce. If he goes to college and has a marketable skill, then yes he can search for jobs in nations with Socialized medicine. They will let him in, and working should give him access to the medical care system, but they won't necessarily give him citizenship.

I actually know some Hemophilia young adults who have moved into countries with socialized medicine for this reason, because at least under socialized medicine you can access the meds that keep you alive.

I'm really ticked at the US system. And, on this point, CF and Hemophilia are similiar. Both you can maintain on, but require access to life saving medication. Without those meds, you can die pretty quickly. But, here in the US when these children reach adulthood what options are available to them? Not nearly enough, not until they are so sick that the medications aren't going to be nearly as effective.

Another CF mom was telling me this spring that our state is starting to kick the CFers off state insurance and aren't counting CF as an automatic qualifier anymore. The stated reason is that with the increasing life expectancy, CF is transitioning to a chronic condition from a terminal condition. But, as she rightly pointed out, CF can only be a chronic condition IF you are very aggressive with treatment and constantly getting access to treatments, meds, doctors, etc. Take away the health insurance...and it goes right back to being terminal quickly because you have no resources to fight it with.

Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.
 

TestifyToLove

New member
No, but they let people in for work related reasons. And, since his original citizenship is India, he's got better access to enter some of the European nations. Most of Europe is desperate for workforce. If he goes to college and has a marketable skill, then yes he can search for jobs in nations with Socialized medicine. They will let him in, and working should give him access to the medical care system, but they won't necessarily give him citizenship.

I actually know some Hemophilia young adults who have moved into countries with socialized medicine for this reason, because at least under socialized medicine you can access the meds that keep you alive.

I'm really ticked at the US system. And, on this point, CF and Hemophilia are similiar. Both you can maintain on, but require access to life saving medication. Without those meds, you can die pretty quickly. But, here in the US when these children reach adulthood what options are available to them? Not nearly enough, not until they are so sick that the medications aren't going to be nearly as effective.

Another CF mom was telling me this spring that our state is starting to kick the CFers off state insurance and aren't counting CF as an automatic qualifier anymore. The stated reason is that with the increasing life expectancy, CF is transitioning to a chronic condition from a terminal condition. But, as she rightly pointed out, CF can only be a chronic condition IF you are very aggressive with treatment and constantly getting access to treatments, meds, doctors, etc. Take away the health insurance...and it goes right back to being terminal quickly because you have no resources to fight it with.

Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.
 

TestifyToLove

New member
No, but they let people in for work related reasons. And, since his original citizenship is India, he's got better access to enter some of the European nations. Most of Europe is desperate for workforce. If he goes to college and has a marketable skill, then yes he can search for jobs in nations with Socialized medicine. They will let him in, and working should give him access to the medical care system, but they won't necessarily give him citizenship.
<br />
<br />I actually know some Hemophilia young adults who have moved into countries with socialized medicine for this reason, because at least under socialized medicine you can access the meds that keep you alive.
<br />
<br />I'm really ticked at the US system. And, on this point, CF and Hemophilia are similiar. Both you can maintain on, but require access to life saving medication. Without those meds, you can die pretty quickly. But, here in the US when these children reach adulthood what options are available to them? Not nearly enough, not until they are so sick that the medications aren't going to be nearly as effective.
<br />
<br />Another CF mom was telling me this spring that our state is starting to kick the CFers off state insurance and aren't counting CF as an automatic qualifier anymore. The stated reason is that with the increasing life expectancy, CF is transitioning to a chronic condition from a terminal condition. But, as she rightly pointed out, CF can only be a chronic condition IF you are very aggressive with treatment and constantly getting access to treatments, meds, doctors, etc. Take away the health insurance...and it goes right back to being terminal quickly because you have no resources to fight it with.
<br />
<br />Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.
 
P

paws

Guest
I am receiving co-pay beneifits. I just found out though that Tobi alone has maxed out my annual Rx benefits already. I contacted the organization pulmozyme co-payments come through and they told me that if I've maxed out the annual benefits, they consider me uninsured and won't help at all, even though they had a grant for $x amount of dollars. And I'm paying $500 frickin dollars/month for insurance.

Geez. Talk about sucky. Seems like they'd go ahead and pay out the allowed amount and then say no more. Sigh....it's just depressing. I wish it were affordable to just pay the *@(%#! out of pocket costs.

Sorry for the continued vent. I've definitely spent too much time on the phone with pharmacies and insurance companies this week.
 
P

paws

Guest
I am receiving co-pay beneifits. I just found out though that Tobi alone has maxed out my annual Rx benefits already. I contacted the organization pulmozyme co-payments come through and they told me that if I've maxed out the annual benefits, they consider me uninsured and won't help at all, even though they had a grant for $x amount of dollars. And I'm paying $500 frickin dollars/month for insurance.

Geez. Talk about sucky. Seems like they'd go ahead and pay out the allowed amount and then say no more. Sigh....it's just depressing. I wish it were affordable to just pay the *@(%#! out of pocket costs.

Sorry for the continued vent. I've definitely spent too much time on the phone with pharmacies and insurance companies this week.
 
P

paws

Guest
I am receiving co-pay beneifits. I just found out though that Tobi alone has maxed out my annual Rx benefits already. I contacted the organization pulmozyme co-payments come through and they told me that if I've maxed out the annual benefits, they consider me uninsured and won't help at all, even though they had a grant for $x amount of dollars. And I'm paying $500 frickin dollars/month for insurance.

Geez. Talk about sucky. Seems like they'd go ahead and pay out the allowed amount and then say no more. Sigh....it's just depressing. I wish it were affordable to just pay the *@(%#! out of pocket costs.

Sorry for the continued vent. I've definitely spent too much time on the phone with pharmacies and insurance companies this week.
 
P

paws

Guest
I am receiving co-pay beneifits. I just found out though that Tobi alone has maxed out my annual Rx benefits already. I contacted the organization pulmozyme co-payments come through and they told me that if I've maxed out the annual benefits, they consider me uninsured and won't help at all, even though they had a grant for $x amount of dollars. And I'm paying $500 frickin dollars/month for insurance.

Geez. Talk about sucky. Seems like they'd go ahead and pay out the allowed amount and then say no more. Sigh....it's just depressing. I wish it were affordable to just pay the *@(%#! out of pocket costs.

Sorry for the continued vent. I've definitely spent too much time on the phone with pharmacies and insurance companies this week.
 
P

paws

Guest
I am receiving co-pay beneifits. I just found out though that Tobi alone has maxed out my annual Rx benefits already. I contacted the organization pulmozyme co-payments come through and they told me that if I've maxed out the annual benefits, they consider me uninsured and won't help at all, even though they had a grant for $x amount of dollars. And I'm paying $500 frickin dollars/month for insurance.
<br />
<br />Geez. Talk about sucky. Seems like they'd go ahead and pay out the allowed amount and then say no more. Sigh....it's just depressing. I wish it were affordable to just pay the *@(%#! out of pocket costs.
<br />
<br />Sorry for the continued vent. I've definitely spent too much time on the phone with pharmacies and insurance companies this week.
 

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.</end quote></div>

Exactly, there is no excuse. Healthcare is an unending nightmare for the average person in the US who gets terminally ill. There are over 45 million people in the US without health insurance, and the only thing that stands between them and all out destitution is a serious illness. After I was hospitalized a few years ago, I was put on Tobi, and the state program didn't cover it. Needless to say I received it through the CF pharmacy, a pharmacy that claims they are not in it for profits, but to help CF'ers out, hahaha, they literally hounded me relentlessly for their money, called me at all hours for their money, and I was forced to write a letter of hardship to show how financially constricted I am. This would never had happned had I been lucky enough to be more financially viable. The US actually has 2 healthcare systems in place, 1 for the people who are born with a silver spoon in their mouths, where money is no hurdle and they have a plethora of options for treating symptoms, and another whose healthcare is slim pickens. The fact is that enhanced treatments are out of reach for a lot due to lack of insurance coverage. Like I said before, in the bible Jesus never once asked to see proof of insurance before he healed someone.
 

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.</end quote></div>

Exactly, there is no excuse. Healthcare is an unending nightmare for the average person in the US who gets terminally ill. There are over 45 million people in the US without health insurance, and the only thing that stands between them and all out destitution is a serious illness. After I was hospitalized a few years ago, I was put on Tobi, and the state program didn't cover it. Needless to say I received it through the CF pharmacy, a pharmacy that claims they are not in it for profits, but to help CF'ers out, hahaha, they literally hounded me relentlessly for their money, called me at all hours for their money, and I was forced to write a letter of hardship to show how financially constricted I am. This would never had happned had I been lucky enough to be more financially viable. The US actually has 2 healthcare systems in place, 1 for the people who are born with a silver spoon in their mouths, where money is no hurdle and they have a plethora of options for treating symptoms, and another whose healthcare is slim pickens. The fact is that enhanced treatments are out of reach for a lot due to lack of insurance coverage. Like I said before, in the bible Jesus never once asked to see proof of insurance before he healed someone.
 

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.</end quote></div>

Exactly, there is no excuse. Healthcare is an unending nightmare for the average person in the US who gets terminally ill. There are over 45 million people in the US without health insurance, and the only thing that stands between them and all out destitution is a serious illness. After I was hospitalized a few years ago, I was put on Tobi, and the state program didn't cover it. Needless to say I received it through the CF pharmacy, a pharmacy that claims they are not in it for profits, but to help CF'ers out, hahaha, they literally hounded me relentlessly for their money, called me at all hours for their money, and I was forced to write a letter of hardship to show how financially constricted I am. This would never had happned had I been lucky enough to be more financially viable. The US actually has 2 healthcare systems in place, 1 for the people who are born with a silver spoon in their mouths, where money is no hurdle and they have a plethora of options for treating symptoms, and another whose healthcare is slim pickens. The fact is that enhanced treatments are out of reach for a lot due to lack of insurance coverage. Like I said before, in the bible Jesus never once asked to see proof of insurance before he healed someone.
 

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.</end quote>

Exactly, there is no excuse. Healthcare is an unending nightmare for the average person in the US who gets terminally ill. There are over 45 million people in the US without health insurance, and the only thing that stands between them and all out destitution is a serious illness. After I was hospitalized a few years ago, I was put on Tobi, and the state program didn't cover it. Needless to say I received it through the CF pharmacy, a pharmacy that claims they are not in it for profits, but to help CF'ers out, hahaha, they literally hounded me relentlessly for their money, called me at all hours for their money, and I was forced to write a letter of hardship to show how financially constricted I am. This would never had happned had I been lucky enough to be more financially viable. The US actually has 2 healthcare systems in place, 1 for the people who are born with a silver spoon in their mouths, where money is no hurdle and they have a plethora of options for treating symptoms, and another whose healthcare is slim pickens. The fact is that enhanced treatments are out of reach for a lot due to lack of insurance coverage. Like I said before, in the bible Jesus never once asked to see proof of insurance before he healed someone.
 

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TestifyToLove</b></i>
<br />Its a catch-22 in this nation. And, I really think a nation as wealthy as this one has NO excuse for leaving our most vunerable, our children with medical conditions, without good options for care.</end quote>
<br />
<br />Exactly, there is no excuse. Healthcare is an unending nightmare for the average person in the US who gets terminally ill. There are over 45 million people in the US without health insurance, and the only thing that stands between them and all out destitution is a serious illness. After I was hospitalized a few years ago, I was put on Tobi, and the state program didn't cover it. Needless to say I received it through the CF pharmacy, a pharmacy that claims they are not in it for profits, but to help CF'ers out, hahaha, they literally hounded me relentlessly for their money, called me at all hours for their money, and I was forced to write a letter of hardship to show how financially constricted I am. This would never had happned had I been lucky enough to be more financially viable. The US actually has 2 healthcare systems in place, 1 for the people who are born with a silver spoon in their mouths, where money is no hurdle and they have a plethora of options for treating symptoms, and another whose healthcare is slim pickens. The fact is that enhanced treatments are out of reach for a lot due to lack of insurance coverage. Like I said before, in the bible Jesus never once asked to see proof of insurance before he healed someone.
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