Need help!!!!

D

DaMan

Guest
Now that I've turned 19 I have lost my medicare, and social security "claims" taht I'm not disabled enough to get my SSI and due to this factor they continuesly deny me to gain my medicare back, and I need to know, while I fight with social security and medicare, how i can get my medication especially my creons and albuterolwithout having to pay an arm and a leg, because I'm starting to run low on these things and I don't know how much longer I will be without my medicare services. These prices for my medication are outrageous but try explaining that to these fools here. Any info would be greatly appreciated.
 
D

DaMan

Guest
Now that I've turned 19 I have lost my medicare, and social security "claims" taht I'm not disabled enough to get my SSI and due to this factor they continuesly deny me to gain my medicare back, and I need to know, while I fight with social security and medicare, how i can get my medication especially my creons and albuterolwithout having to pay an arm and a leg, because I'm starting to run low on these things and I don't know how much longer I will be without my medicare services. These prices for my medication are outrageous but try explaining that to these fools here. Any info would be greatly appreciated.
 
J

jessykt

Guest
Try your state medicaid. Some hospitals also have a sliding scale fee through their own pharmacy (but the drugs they cover is SLIM). Try the CF Foundation and then try the manufacturers themselves.
 
J

jessykt

Guest
Try your state medicaid. Some hospitals also have a sliding scale fee through their own pharmacy (but the drugs they cover is SLIM). Try the CF Foundation and then try the manufacturers themselves.
 

jamiebug

New member
That is pretty normal. When I turned 18 I had to appeal the decision and the state appointed me a lawyer who helped me and my case was reviewed. . .I was able to qualify as an adult. I think it's pretty standard, I mean it's not like you're get better as you get older. It's not hard to prove your still dissabled. I had to do this almost 15 years ago for the SAME reason & it wasnt' too terrible.
*If you get qualified as a dissabled adult and at some point you go to work and earn too much, it will be still be an advantage. I worked full time after I was 20 until I was about 26. When I filed for Social Security Dissability I was automatically qualified I think because I had already fought that battle. . . .Look into appealing it. I think I still got benefits while it was being appealed. FIGHT IT, that's what they are expecting you do so they can requalify you "under the adult guidelines".
Meanwhile, you should qualify for your state's medicaid program if you have little to no income & qualify under their guidlines. Recieving SSI automatically allows you to qualify for medicaid. . .or at least it did for me.
You can also contact the CF assistance program, 888-315-4154 they got me qualified so I can get meds like Tobi, Enzymes, and Cayston (they help with other meds too) I'm post lung transplant so I don't need all the other meds.
 

jamiebug

New member
That is pretty normal. When I turned 18 I had to appeal the decision and the state appointed me a lawyer who helped me and my case was reviewed. . .I was able to qualify as an adult. I think it's pretty standard, I mean it's not like you're get better as you get older. It's not hard to prove your still dissabled. I had to do this almost 15 years ago for the SAME reason & it wasnt' too terrible.
*If you get qualified as a dissabled adult and at some point you go to work and earn too much, it will be still be an advantage. I worked full time after I was 20 until I was about 26. When I filed for Social Security Dissability I was automatically qualified I think because I had already fought that battle. . . .Look into appealing it. I think I still got benefits while it was being appealed. FIGHT IT, that's what they are expecting you do so they can requalify you "under the adult guidelines".
Meanwhile, you should qualify for your state's medicaid program if you have little to no income & qualify under their guidlines. Recieving SSI automatically allows you to qualify for medicaid. . .or at least it did for me.
You can also contact the CF assistance program, 888-315-4154 they got me qualified so I can get meds like Tobi, Enzymes, and Cayston (they help with other meds too) I'm post lung transplant so I don't need all the other meds.
 

JustDucky

New member
Definitely try state help, I agree....those meds are super expensive!! I don't even know how people with good salaries could afford them out of pocket. Everyone has given good advice, contact the drug companies, CF care etc. Also, talk to your CF center's social worker to see if they can help. Sometimes doctor's offices have samples they can give out as well.....Try anything and don't give up on your SSDI.
Good luck,
Jenn 40 w/CF
 

JustDucky

New member
Definitely try state help, I agree....those meds are super expensive!! I don't even know how people with good salaries could afford them out of pocket. Everyone has given good advice, contact the drug companies, CF care etc. Also, talk to your CF center's social worker to see if they can help. Sometimes doctor's offices have samples they can give out as well.....Try anything and don't give up on your SSDI.
Good luck,
Jenn 40 w/CF
 

Giggles

New member
Oh man! I would google Beth Sufian and get her number and call her! She has CF and is an attorney and gets people with CF medicare, medicaid, ssi etc. She is a pro. Don't fool around and got through it yourself let her help you and get it done. I do not have her number off hand otherwise I would give it to you but you will find her if you google her name. She is really great!

Foundation care pharmacy is a great pharmacy for CF maybe they can help with costs or getting meds. Also, try CF Pharmacy and call CF Foundation and see where they can direct you to get meds and tell them your situation. There has got to be some help out there somewhere! Good Luck!
 

Giggles

New member
Oh man! I would google Beth Sufian and get her number and call her! She has CF and is an attorney and gets people with CF medicare, medicaid, ssi etc. She is a pro. Don't fool around and got through it yourself let her help you and get it done. I do not have her number off hand otherwise I would give it to you but you will find her if you google her name. She is really great!

Foundation care pharmacy is a great pharmacy for CF maybe they can help with costs or getting meds. Also, try CF Pharmacy and call CF Foundation and see where they can direct you to get meds and tell them your situation. There has got to be some help out there somewhere! Good Luck!
 
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