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 I belong to a hobby forum and know that there are certain rules to follow (published and unpublished) so I will do my best to be a good member.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.
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.