Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Today is the day for creepy stories, it would seem. Insurance is at the top of the list and availability of getting our right drug is a close second. I was already on Medicare when I was diagnosed and had I not been, it would have been a financial catastrophe. I also had a secondary policy, so after I pay my deductibles, my doctors and tests are cost free. My husband and I pay a hefty price for those secondary policies. To top it off my husband goes to VA for treatment and he has an additional co-pay for the visit and the drugs. Even if he goes to our family doctors, and receives a script for drugs, he has to make an appointment with VA (for which he has to pay for the visit) and they declare what drug he will take. There are no brand name drugs, only generic. I don't know why he insists on going to VA when he has coverage, but he is thinking down the line when he may not be able to afford the insurance. I do have Plan D which covers drugs up to the gap, which is just about where I am, when I will have to pay full price for my drugs and several are over $100. What will I do then. I understand how you can be just $1 over the maximum to receive coverage for free or reduced drugs. It's like a door slamming in your face. I do know there are free drugs, but I just don't qualify. If you think your qualify, don't stop googling, go to your hospital and speak to a social worker who usually has information that can guide you through the process. LLS is a good place to start and NCI is another. They all have chapters near you if you want to call them. Patient assistance is out there, you just don't give up. Just as I received the drug " Procrit " , my doctor dropped me like I was a hot potato. Now I have to start all over again and find out where and what I can do to get this drug to stop my dependency on blood transfusions. Yes, Medicare pays for that, but not a shot. I'm sure it costs a lot more with administrative costs to tranfuse than to give me a shot in the arm, and I mean that literally. My plan is simple, keep trying and don't throw up your hands in defeat, there is some thing and someone who has some information that can start the ball rolling for you and may you be in the right place at the right time to receive it. Your day will come if you keep trying. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Lottie, medicare said I had to pay $1,700.00 for a shot, and I would need two a month. $3400.00 I just had a transfusion, which was $3,700 for two units, but only get one maybe every 5 months? therefore, transfusions are less expensive. Procrit cost about the same, but requires a shot a week, now that's a lot of bucks! What do you suppose is in those shots to demand that price? Or is it just the word " cancer " that makes them so expensive? I love that we are kept alive by these powerful drugs, but regret the cost, especially to those without coverage. We need the politicians to stop thinking of how best they can benefit from a new health care program and think of the ones that need it so badly. Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 From: Lottie Duthu <lotajam@...> Subject: [ ] Creepy stories " CML " < > Date: Tuesday, October 13, 2009, 4:03 PM Today is the day for creepy stories, it would seem. Insurance is at the top of the list and availability of getting our right drug is a close second. I was already on Medicare when I was diagnosed and had I not been, it would have been a financial catastrophe. I also had a secondary policy, so after I pay my deductibles, my doctors and tests are cost free. My husband and I pay a hefty price for those secondary policies. To top it off my husband goes to VA for treatment and he has an additional co-pay for the visit and the drugs. Even if he goes to our family doctors, and receives a script for drugs, he has to make an appointment with VA (for which he has to pay for the visit) and they declare what drug he will take. There are no brand name drugs, only generic. I don't know why he insists on going to VA when he has coverage, but he is thinking down the line when he may not be able to afford the insurance. I do have Plan D which covers drugs up to the gap, which is just about where I am, when I will have to pay full price for my drugs and several are over $100. What will I do then. I understand how you can be just $1 over the maximum to receive coverage for free or reduced drugs. It's like a door slamming in your face. I do know there are free drugs, but I just don't qualify. If you think your qualify, don't stop googling, go to your hospital and speak to a social worker who usually has information that can guide you through the process. LLS is a good place to start and NCI is another. They all have chapters near you if you want to call them. Patient assistance is out there, you just don't give up. Just as I received the drug " Procrit " , my doctor dropped me like I was a hot potato. Now I have to start all over again and find out where and what I can do to get this drug to stop my dependency on blood transfusions. Yes, Medicare pays for that, but not a shot. I'm sure it costs a lot more with administrative costs to tranfuse than to give me a shot in the arm, and I mean that literally. My plan is simple, keep trying and don't throw up your hands in defeat, there is some thing and someone who has some information that can start the ball rolling for you and may you be in the right place at the right time to receive it. Your day will come if you keep trying. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2009 Report Share Posted October 14, 2009 Hi Everyone: These creepy stories are certainly scaring me. I know we will never have the money like that to pay for treatment when my husband retires. I do not know which way I would turn to get the help, but like Lottie said you have to just search out every thing you can till you get the help you need. This is why this support group is so good. We all learn something everyday, and share ideas on how to handle what we learn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2009 Report Share Posted October 14, 2009 > > Lottie, medicare said I had to pay $1,700.00 for a shot, and I would need two a month. $3400.00 > I just had a transfusion, which was $3,700 for two units, but only get one maybe every 5 months? > therefore, transfusions are less expensive. Procrit cost about the same, but requires a shot a week, now that's a lot of bucks! What do you suppose is in those shots to demand that price? Or is it just the word " cancer " that makes them so expensive? __________________________ Hi Bobby, I don't understand why Procrit is so expensive for you....are you giving your own shots and just getting the vial from the pharmacy? I have not needed Procrit for almost a year!!! but the last time I paid for an Rx it was ?? maybe about $700 per shot (40,000 units). The drug is expensive because it is a biological drug and they are not easy to make.....not like just taking chemicals and compounding a pill. Others in this category and also expensive (and labor intensive) are interferon, interluken, and similar drugs....not all just for cancer. I think it is a bigger rip that the chemical drugs are so expensive. The thing that made the biggest difference for me not needing the Procrit so much I think was to get 2 or 3 infusions of IV iron. My ferritin was low (and my Medicare Part D said the ferritin had to be at least 100 or they would not pay for Procrit). After the IV infusions, my ferritin went up to 157.....that was last Dec......and now it has slowly dropped to about 47, so I will see about getting some more IV iron. Have you tried that???? my red count is always low by a small amount, but my hgb stays in the low end of normal (about 11.5 or 12). Have you checked out your ferritin? C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2009 Report Share Posted October 14, 2009 Hi , right now I am not on Procrit or Aranesp. the last Aranesp shots I got were when i was in the xl228 trial, they gave them to me at the U of Mich. then one day they sent a letter saying I had to pay for my own. No, I never gave myself the shots when I was on Procrit, i picked it up at Walgreen's and took it to the clinic,then they too stopped them, but that was a while back. Dr. talpaz said to take 975 mg ferrous sulphate, I will ask him about the ferittin, I see him on the 26th. Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 From: hey00nanc <ncogan@...> Subject: Re: [ ] Creepy stories Date: Wednesday, October 14, 2009, 2:34 PM > > Lottie, medicare said I had to pay $1,700.00 for a shot, and I would need two a month. $3400.00 > I just had a transfusion, which was $3,700 for two units, but only get one maybe every 5 months? > therefore, transfusions are less expensive. Procrit cost about the same, but requires a shot a week, now that's a lot of bucks! What do you suppose is in those shots to demand that price? Or is it just the word " cancer " that makes them so expensive? ____________ _________ _____ Hi Bobby, I don't understand why Procrit is so expensive for you....are you giving your own shots and just getting the vial from the pharmacy? I have not needed Procrit for almost a year!!! but the last time I paid for an Rx it was ?? maybe about $700 per shot (40,000 units). The drug is expensive because it is a biological drug and they are not easy to make.....not like just taking chemicals and compounding a pill. Others in this category and also expensive (and labor intensive) are interferon, interluken, and similar drugs....not all just for cancer. I think it is a bigger rip that the chemical drugs are so expensive. The thing that made the biggest difference for me not needing the Procrit so much I think was to get 2 or 3 infusions of IV iron. My ferritin was low (and my Medicare Part D said the ferritin had to be at least 100 or they would not pay for Procrit). After the IV infusions, my ferritin went up to 157.....that was last Dec......and now it has slowly dropped to about 47, so I will see about getting some more IV iron. Have you tried that???? my red count is always low by a small amount, but my hgb stays in the low end of normal (about 11.5 or 12). Have you checked out your ferritin? C. Quote Link to comment Share on other sites More sharing options...
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