New Member - Trouble with Mississippi Medicaid

eagle693

New member
Hello to all,
I am a new member of the forum, and look forward to learning from the experienced members. I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member. As this is my first post, I am reluctant to start this way (venting about Medicaid) but would like to get advice from others that have fought similar battles with the bureacrats.
We are supporting a young man (24 years old) with CF. He came into our lives when he was dating our daughter about 4 years ago, they are still very close friends and she is always there to help. The young man's father died when he was two, and his mother has really provided little support, so he spends most of his time living with us.
We are on a fast learning curve, trying to absorb all the info we can about CF. About a year ago, his doctor told us it was time to try to get a transplant. Initially we were advised to seek one in Houston, and we made the initial contacts with the folks there. Everything went well, Houston wanted him, but Mississippi had not approved the Houston facility for transplants - BACK TO SQUARE ONE!
Then we were advised to go to Univ. of Alabama, Birmingham (UAB). After much prodding and pushing, I was able to get Miss. Medicaid to sign a contract with UAB for the transplant. Our friend passed the physical with flying colors, and again, UAB wanted him and currently stand ready to put him on the list - <u>only one problem </u>- Miss. Medicaid does not provide coverage for all the drugs he will need post transplant.
Of course, we are working other angles (drug company asistance programs, fund raisers, etc.) but we found this to be such a <b>CRUEL</b> turn of events. We, and our friend, were so elated and optimistic about the UAB results, only to subsequently be brought crashing to the ground:
"Great news - you are a perfect candidate for a transplant, oh but the bad news is that Mississippi Medicaid won't pay for the medicine you need to stay alive after the transplant."
Please pardon my venting, and I'm sure many on this forum have been through worse trials, but we were new to this and find the emotional highs and lows very disturbing. My wife and I are determined to make this transplant happen, I will move whatever mountains are necessary. So if anyone has any advice on how to deal with the Medicaid wonks, I will gladly accept your suggestions. For example, where can I go to get statistical comparisons of the States that fund transplants through medicaid? Is there any way to compare their rules/policies? If I were able to go back to the decision makers in Mississippi Medicaid and say "Look, Mississippi is the only state out of 35 that does not provide all the post transplant medicine..." then that might be a convincing argument for them to change their policies.
Again, any advice will be welcomed,
Thanks,
Glynn.
 

eagle693

New member
Hello to all,
I am a new member of the forum, and look forward to learning from the experienced members. I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member. As this is my first post, I am reluctant to start this way (venting about Medicaid) but would like to get advice from others that have fought similar battles with the bureacrats.
We are supporting a young man (24 years old) with CF. He came into our lives when he was dating our daughter about 4 years ago, they are still very close friends and she is always there to help. The young man's father died when he was two, and his mother has really provided little support, so he spends most of his time living with us.
We are on a fast learning curve, trying to absorb all the info we can about CF. About a year ago, his doctor told us it was time to try to get a transplant. Initially we were advised to seek one in Houston, and we made the initial contacts with the folks there. Everything went well, Houston wanted him, but Mississippi had not approved the Houston facility for transplants - BACK TO SQUARE ONE!
Then we were advised to go to Univ. of Alabama, Birmingham (UAB). After much prodding and pushing, I was able to get Miss. Medicaid to sign a contract with UAB for the transplant. Our friend passed the physical with flying colors, and again, UAB wanted him and currently stand ready to put him on the list - <u>only one problem </u>- Miss. Medicaid does not provide coverage for all the drugs he will need post transplant.
Of course, we are working other angles (drug company asistance programs, fund raisers, etc.) but we found this to be such a <b>CRUEL</b> turn of events. We, and our friend, were so elated and optimistic about the UAB results, only to subsequently be brought crashing to the ground:
"Great news - you are a perfect candidate for a transplant, oh but the bad news is that Mississippi Medicaid won't pay for the medicine you need to stay alive after the transplant."
Please pardon my venting, and I'm sure many on this forum have been through worse trials, but we were new to this and find the emotional highs and lows very disturbing. My wife and I are determined to make this transplant happen, I will move whatever mountains are necessary. So if anyone has any advice on how to deal with the Medicaid wonks, I will gladly accept your suggestions. For example, where can I go to get statistical comparisons of the States that fund transplants through medicaid? Is there any way to compare their rules/policies? If I were able to go back to the decision makers in Mississippi Medicaid and say "Look, Mississippi is the only state out of 35 that does not provide all the post transplant medicine..." then that might be a convincing argument for them to change their policies.
Again, any advice will be welcomed,
Thanks,
Glynn.
 

eagle693

New member
Hello to all,
I am a new member of the forum, and look forward to learning from the experienced members. I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member. As this is my first post, I am reluctant to start this way (venting about Medicaid) but would like to get advice from others that have fought similar battles with the bureacrats.
We are supporting a young man (24 years old) with CF. He came into our lives when he was dating our daughter about 4 years ago, they are still very close friends and she is always there to help. The young man's father died when he was two, and his mother has really provided little support, so he spends most of his time living with us.
We are on a fast learning curve, trying to absorb all the info we can about CF. About a year ago, his doctor told us it was time to try to get a transplant. Initially we were advised to seek one in Houston, and we made the initial contacts with the folks there. Everything went well, Houston wanted him, but Mississippi had not approved the Houston facility for transplants - BACK TO SQUARE ONE!
Then we were advised to go to Univ. of Alabama, Birmingham (UAB). After much prodding and pushing, I was able to get Miss. Medicaid to sign a contract with UAB for the transplant. Our friend passed the physical with flying colors, and again, UAB wanted him and currently stand ready to put him on the list - <u>only one problem </u>- Miss. Medicaid does not provide coverage for all the drugs he will need post transplant.
Of course, we are working other angles (drug company asistance programs, fund raisers, etc.) but we found this to be such a <b>CRUEL</b> turn of events. We, and our friend, were so elated and optimistic about the UAB results, only to subsequently be brought crashing to the ground:
"Great news - you are a perfect candidate for a transplant, oh but the bad news is that Mississippi Medicaid won't pay for the medicine you need to stay alive after the transplant."
Please pardon my venting, and I'm sure many on this forum have been through worse trials, but we were new to this and find the emotional highs and lows very disturbing. My wife and I are determined to make this transplant happen, I will move whatever mountains are necessary. So if anyone has any advice on how to deal with the Medicaid wonks, I will gladly accept your suggestions. For example, where can I go to get statistical comparisons of the States that fund transplants through medicaid? Is there any way to compare their rules/policies? If I were able to go back to the decision makers in Mississippi Medicaid and say "Look, Mississippi is the only state out of 35 that does not provide all the post transplant medicine..." then that might be a convincing argument for them to change their policies.
Again, any advice will be welcomed,
Thanks,
Glynn.
 

eagle693

New member
Hello to all,
I am a new member of the forum, and look forward to learning from the experienced members. I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member. As this is my first post, I am reluctant to start this way (venting about Medicaid) but would like to get advice from others that have fought similar battles with the bureacrats.
We are supporting a young man (24 years old) with CF. He came into our lives when he was dating our daughter about 4 years ago, they are still very close friends and she is always there to help. The young man's father died when he was two, and his mother has really provided little support, so he spends most of his time living with us.
We are on a fast learning curve, trying to absorb all the info we can about CF. About a year ago, his doctor told us it was time to try to get a transplant. Initially we were advised to seek one in Houston, and we made the initial contacts with the folks there. Everything went well, Houston wanted him, but Mississippi had not approved the Houston facility for transplants - BACK TO SQUARE ONE!
Then we were advised to go to Univ. of Alabama, Birmingham (UAB). After much prodding and pushing, I was able to get Miss. Medicaid to sign a contract with UAB for the transplant. Our friend passed the physical with flying colors, and again, UAB wanted him and currently stand ready to put him on the list - <u>only one problem </u>- Miss. Medicaid does not provide coverage for all the drugs he will need post transplant.
Of course, we are working other angles (drug company asistance programs, fund raisers, etc.) but we found this to be such a <b>CRUEL</b> turn of events. We, and our friend, were so elated and optimistic about the UAB results, only to subsequently be brought crashing to the ground:
"Great news - you are a perfect candidate for a transplant, oh but the bad news is that Mississippi Medicaid won't pay for the medicine you need to stay alive after the transplant."
Please pardon my venting, and I'm sure many on this forum have been through worse trials, but we were new to this and find the emotional highs and lows very disturbing. My wife and I are determined to make this transplant happen, I will move whatever mountains are necessary. So if anyone has any advice on how to deal with the Medicaid wonks, I will gladly accept your suggestions. For example, where can I go to get statistical comparisons of the States that fund transplants through medicaid? Is there any way to compare their rules/policies? If I were able to go back to the decision makers in Mississippi Medicaid and say "Look, Mississippi is the only state out of 35 that does not provide all the post transplant medicine..." then that might be a convincing argument for them to change their policies.
Again, any advice will be welcomed,
Thanks,
Glynn.
 

eagle693

New member
Hello to all,
<br /> I am a new member of the forum, and look forward to learning from the experienced members. I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member. As this is my first post, I am reluctant to start this way (venting about Medicaid) but would like to get advice from others that have fought similar battles with the bureacrats.
<br /> We are supporting a young man (24 years old) with CF. He came into our lives when he was dating our daughter about 4 years ago, they are still very close friends and she is always there to help. The young man's father died when he was two, and his mother has really provided little support, so he spends most of his time living with us.
<br /> We are on a fast learning curve, trying to absorb all the info we can about CF. About a year ago, his doctor told us it was time to try to get a transplant. Initially we were advised to seek one in Houston, and we made the initial contacts with the folks there. Everything went well, Houston wanted him, but Mississippi had not approved the Houston facility for transplants - BACK TO SQUARE ONE!
<br /> Then we were advised to go to Univ. of Alabama, Birmingham (UAB). After much prodding and pushing, I was able to get Miss. Medicaid to sign a contract with UAB for the transplant. Our friend passed the physical with flying colors, and again, UAB wanted him and currently stand ready to put him on the list - <u>only one problem </u>- Miss. Medicaid does not provide coverage for all the drugs he will need post transplant.
<br /> Of course, we are working other angles (drug company asistance programs, fund raisers, etc.) but we found this to be such a <b>CRUEL</b> turn of events. We, and our friend, were so elated and optimistic about the UAB results, only to subsequently be brought crashing to the ground:
<br />"Great news - you are a perfect candidate for a transplant, oh but the bad news is that Mississippi Medicaid won't pay for the medicine you need to stay alive after the transplant."
<br /> Please pardon my venting, and I'm sure many on this forum have been through worse trials, but we were new to this and find the emotional highs and lows very disturbing. My wife and I are determined to make this transplant happen, I will move whatever mountains are necessary. So if anyone has any advice on how to deal with the Medicaid wonks, I will gladly accept your suggestions. For example, where can I go to get statistical comparisons of the States that fund transplants through medicaid? Is there any way to compare their rules/policies? If I were able to go back to the decision makers in Mississippi Medicaid and say "Look, Mississippi is the only state out of 35 that does not provide all the post transplant medicine..." then that might be a convincing argument for them to change their policies.
<br />Again, any advice will be welcomed,
<br />Thanks,
<br />Glynn.
 

Skye

New member
First of all...let me say that i am sorry you are having to deal with such an emotional issue and then to have to deal with medicaid on top of that. I don't have any real answers for you...I can try to brainstorm with you. Has this 24year old ever considered filing for SSDI(disability). He may be eligible if he has ever worked. I believe that Medicare does cover some if not all of the costs of rejection drugs. If an individual qualifies for SSDI they automatically qualify for medicare. That is a LONG road though and I am not sure what you are dealing with right now in the way of health. I went for a tx eval. a couple of years ago and I am still doing very well. I know some need to be listed right away though. There is a CF patient in Houston who is also a lawyer. Her name is Beth Sufian. She may be able to give you some direction. There is a legal hotline on the Cystic Fibrosis Foundation website....maybe call and see if they can point you in the right direction. Since he is eligible for medicaid....is he able to receive SSI (supplemental security income). Something like that may help defer some of the costs.

I know this was probably not much help....I wish you all the best and please keep us updated.
 

Skye

New member
First of all...let me say that i am sorry you are having to deal with such an emotional issue and then to have to deal with medicaid on top of that. I don't have any real answers for you...I can try to brainstorm with you. Has this 24year old ever considered filing for SSDI(disability). He may be eligible if he has ever worked. I believe that Medicare does cover some if not all of the costs of rejection drugs. If an individual qualifies for SSDI they automatically qualify for medicare. That is a LONG road though and I am not sure what you are dealing with right now in the way of health. I went for a tx eval. a couple of years ago and I am still doing very well. I know some need to be listed right away though. There is a CF patient in Houston who is also a lawyer. Her name is Beth Sufian. She may be able to give you some direction. There is a legal hotline on the Cystic Fibrosis Foundation website....maybe call and see if they can point you in the right direction. Since he is eligible for medicaid....is he able to receive SSI (supplemental security income). Something like that may help defer some of the costs.

I know this was probably not much help....I wish you all the best and please keep us updated.
 

Skye

New member
First of all...let me say that i am sorry you are having to deal with such an emotional issue and then to have to deal with medicaid on top of that. I don't have any real answers for you...I can try to brainstorm with you. Has this 24year old ever considered filing for SSDI(disability). He may be eligible if he has ever worked. I believe that Medicare does cover some if not all of the costs of rejection drugs. If an individual qualifies for SSDI they automatically qualify for medicare. That is a LONG road though and I am not sure what you are dealing with right now in the way of health. I went for a tx eval. a couple of years ago and I am still doing very well. I know some need to be listed right away though. There is a CF patient in Houston who is also a lawyer. Her name is Beth Sufian. She may be able to give you some direction. There is a legal hotline on the Cystic Fibrosis Foundation website....maybe call and see if they can point you in the right direction. Since he is eligible for medicaid....is he able to receive SSI (supplemental security income). Something like that may help defer some of the costs.

I know this was probably not much help....I wish you all the best and please keep us updated.
 

Skye

New member
First of all...let me say that i am sorry you are having to deal with such an emotional issue and then to have to deal with medicaid on top of that. I don't have any real answers for you...I can try to brainstorm with you. Has this 24year old ever considered filing for SSDI(disability). He may be eligible if he has ever worked. I believe that Medicare does cover some if not all of the costs of rejection drugs. If an individual qualifies for SSDI they automatically qualify for medicare. That is a LONG road though and I am not sure what you are dealing with right now in the way of health. I went for a tx eval. a couple of years ago and I am still doing very well. I know some need to be listed right away though. There is a CF patient in Houston who is also a lawyer. Her name is Beth Sufian. She may be able to give you some direction. There is a legal hotline on the Cystic Fibrosis Foundation website....maybe call and see if they can point you in the right direction. Since he is eligible for medicaid....is he able to receive SSI (supplemental security income). Something like that may help defer some of the costs.

I know this was probably not much help....I wish you all the best and please keep us updated.
 

Skye

New member
First of all...let me say that i am sorry you are having to deal with such an emotional issue and then to have to deal with medicaid on top of that. I don't have any real answers for you...I can try to brainstorm with you. Has this 24year old ever considered filing for SSDI(disability). He may be eligible if he has ever worked. I believe that Medicare does cover some if not all of the costs of rejection drugs. If an individual qualifies for SSDI they automatically qualify for medicare. That is a LONG road though and I am not sure what you are dealing with right now in the way of health. I went for a tx eval. a couple of years ago and I am still doing very well. I know some need to be listed right away though. There is a CF patient in Houston who is also a lawyer. Her name is Beth Sufian. She may be able to give you some direction. There is a legal hotline on the Cystic Fibrosis Foundation website....maybe call and see if they can point you in the right direction. Since he is eligible for medicaid....is he able to receive SSI (supplemental security income). Something like that may help defer some of the costs.
<br />
<br />I know this was probably not much help....I wish you all the best and please keep us updated.
 

eagle693

New member
Skye,
Thanks so much for the reply - your idea of checking into medicare is certainly worth looking into. He did work some after he finished high school - so maybe that is a possibility.
I guess I just had to vent to sympathetic listners about the futility of dealing with the medicaid folks. But we will get through this, and I WILL do whatever is necessary to get that transplant for BJ.
Again, thanks for your concern. I will keep everyone posted as we travel this path.
Glynn.
 

eagle693

New member
Skye,
Thanks so much for the reply - your idea of checking into medicare is certainly worth looking into. He did work some after he finished high school - so maybe that is a possibility.
I guess I just had to vent to sympathetic listners about the futility of dealing with the medicaid folks. But we will get through this, and I WILL do whatever is necessary to get that transplant for BJ.
Again, thanks for your concern. I will keep everyone posted as we travel this path.
Glynn.
 

eagle693

New member
Skye,
Thanks so much for the reply - your idea of checking into medicare is certainly worth looking into. He did work some after he finished high school - so maybe that is a possibility.
I guess I just had to vent to sympathetic listners about the futility of dealing with the medicaid folks. But we will get through this, and I WILL do whatever is necessary to get that transplant for BJ.
Again, thanks for your concern. I will keep everyone posted as we travel this path.
Glynn.
 

eagle693

New member
Skye,
Thanks so much for the reply - your idea of checking into medicare is certainly worth looking into. He did work some after he finished high school - so maybe that is a possibility.
I guess I just had to vent to sympathetic listners about the futility of dealing with the medicaid folks. But we will get through this, and I WILL do whatever is necessary to get that transplant for BJ.
Again, thanks for your concern. I will keep everyone posted as we travel this path.
Glynn.
 

eagle693

New member
Skye,
<br /> Thanks so much for the reply - your idea of checking into medicare is certainly worth looking into. He did work some after he finished high school - so maybe that is a possibility.
<br /> I guess I just had to vent to sympathetic listners about the futility of dealing with the medicaid folks. But we will get through this, and I WILL do whatever is necessary to get that transplant for BJ.
<br /> Again, thanks for your concern. I will keep everyone posted as we travel this path.
<br />Glynn.
 

Skye

New member
If you are interested in looking into the SSDI process, I would HIGHLY suggest contacting Julie on this board. That is her username. Just PM "Julie". She has set up a not-for-profit website to help CFers navigate the SSDI system. She is fabulous and it won't cost you a dime in legal fees. She has a website and I am not sure of it at this moment. I HIGHLY recommend contacting her.

all my best,
Karen
 

Skye

New member
If you are interested in looking into the SSDI process, I would HIGHLY suggest contacting Julie on this board. That is her username. Just PM "Julie". She has set up a not-for-profit website to help CFers navigate the SSDI system. She is fabulous and it won't cost you a dime in legal fees. She has a website and I am not sure of it at this moment. I HIGHLY recommend contacting her.

all my best,
Karen
 

Skye

New member
If you are interested in looking into the SSDI process, I would HIGHLY suggest contacting Julie on this board. That is her username. Just PM "Julie". She has set up a not-for-profit website to help CFers navigate the SSDI system. She is fabulous and it won't cost you a dime in legal fees. She has a website and I am not sure of it at this moment. I HIGHLY recommend contacting her.

all my best,
Karen
 

Skye

New member
If you are interested in looking into the SSDI process, I would HIGHLY suggest contacting Julie on this board. That is her username. Just PM "Julie". She has set up a not-for-profit website to help CFers navigate the SSDI system. She is fabulous and it won't cost you a dime in legal fees. She has a website and I am not sure of it at this moment. I HIGHLY recommend contacting her.

all my best,
Karen
 

Skye

New member
If you are interested in looking into the SSDI process, I would HIGHLY suggest contacting Julie on this board. That is her username. Just PM "Julie". She has set up a not-for-profit website to help CFers navigate the SSDI system. She is fabulous and it won't cost you a dime in legal fees. She has a website and I am not sure of it at this moment. I HIGHLY recommend contacting her.
<br />
<br />all my best,
<br />Karen
 
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