Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi, my name is laura Getz, some of you may remember me. I just joined the list. My pulmonologist precribed for me Tracleer, but we have made some research about thios med and we found out that it cost about 5000 por month! that is an amount of money we coulnd't pay! now, we also laerned that they manufacturer has I think two chariti organizations that MAY help you to pay for your tracleer, but there is nothing certain. My question is to those who have gone trhoug the process of getting tracleer, if your insurance did not cover this med, how did you get the medicine? how much COULD one have to pay? Iam afraid of signing the paper where I consent to enter the Tracleer program, because it says that the manufacturer is not obligated to pay for my med, and it says at the very bottom that i will be responsible to pay for my meds. Please somebody help me out! getz 35 scleroderma, pulmonary fibrosis, pulmonary hipertension Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , I have no specific experience with Tracleer as I've never been on it and don't have pulmonary hypertension. I have however received other meds at no charge through manufacturers programs. Obviously there are no guarantees but it's worth it to apply to whatever programs are available. Is this the medication the doctor is 100% settled on or has he given you alternatives? Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, January 9, 2009 11:27:45 AMSubject: tracleer Hi, my name is laura Getz, some of you may remember me. I just joined the list. My pulmonologist precribed for me Tracleer, but we have made some research about thios med and we found out that it cost about 5000 por month! that is an amount of money we coulnd't pay! now, we also laerned that they manufacturer has I think two chariti organizations that MAY help you to pay for your tracleer, but there is nothing certain. My question is to those who have gone trhoug the process of getting tracleer, if your insurance did not cover this med, how did you get the medicine? how much COULD one have to pay? Iam afraid of signing the paper where I consent to enter the Tracleer program, because it says that the manufacturer is not obligated to pay for my med, and it says at the very bottom that i will be responsible to pay for my meds. Please somebody help me out! getz 35 scleroderma, pulmonary fibrosis, pulmonary hipertension Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 First, do you have insurance and they refused or do you not have insurance? I ask because Tracleer is covered by most insurances, including Medicare Part D plans. It does take a very specific diagnosis and process to get that coverage but it is there. As it and Revatio are the two standard medications for PH, I can't imagine it not being covered for PH. Now, of course, I'm making the assumption you're getting it prescribed for PH. If you're getting it for PF instead then it is not yet approved.So, case one, try your insurer if you have one. If not, I'd go to Tracleer themselves at http://www.tracleer.com/default.asp?page=Patients_GetTracleerPatients who are uninsured or who need help paying for their medication may qualify to receive financial assistance for Tracleer. Call T.A.P. for details. To contact T.A.P., call toll-free at 1-.If you're wanting it for PF instead of PH then the studies recruiting just for PF are no longer recruiting. There are still some clinical trials open for those with PH and PF. Here is a link to all those trials:http://clinicaltrials.gov/ct2/results?term=bosentanOne last point is that if for some strange reason you're insured and your company doesn't cover it, you might talk to your doctor about Revatio as an alternative. >> Hi, my name is laura Getz, some of you may remember me. I just joined the list.> My pulmonologist precribed for me Tracleer, but we have made some research about thios med and we found out that it cost about 5000 por month! that is an amount of money we coulnd't pay! now, we also laerned that they manufacturer has I think two chariti organizations that MAY help you to pay for your tracleer, but there is nothing certain.> > My question is to those who have gone trhoug the process of getting tracleer, if your insurance did not cover this med, how did you get the medicine? how much COULD one have to pay? Iam afraid of signing the paper where I consent to enter the Tracleer program, because it says that the manufacturer is not obligated to pay for my med, and it says at the very bottom that i will be responsible to pay for my meds. > > Please somebody help me out!> > getz 35> scleroderma, pulmonary fibrosis, pulmonary hipertension> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I am on Tracleer and have been for about one year now. I was prescribed this medication for Pulm. Hypertension after my insurance company refused to pay for Viagra - which is also prescribed to treat PH. My doctor did all of the necessary steps for me to get this medicine paid for. It has to come from a Specialty Pharmacy, as it is not dispensed through traditional pharmacies. Once you are prescribed Tracleer, if you cannot afford it and/or you don't have insurance, the maker of Tracleer will pay for it for you. Also, there is a charity fund which will even pay your co-pay, if necessary. All of this information was given to me by the maker of Tracleer and my doctor. I would check with them to see what they can do for you. However, I will tell you that since I have been on the Tracleer (like I said earlier, about one year), neither my PH or PF have improved. As a matter of fact, just the opposite has happened. The blood pressure in my lungs has worsened and my oxygen needs have increased and my shortness of breath has increased. In other words, I have seen no real benefit to being on the Tracleer, however, it may be that I would be worse without it? I've realized in my battle, at least, there are lots of medications - none of which really do much, but each of which do a little. I have some meds that help with the cough, some that help with pain, some that lower my blood pressure, some that allow my heart to not have to work so hard, something to help with depression (who wouldn't be depressed on all these meds?) Lol. Anyway, the bottom line is that each person responds differently because there are so many variables. I wish you the best of luck and hope that you find what helps you the most. God Bless, Tina, Ohio IPF 04/07, PH 11/07, listed for tx 06/08 Tina Subject: Re: tracleerTo: Breathe-Support Date: Friday, January 9, 2009, 12:00 PM First, do you have insurance and they refused or do you not have insurance? I ask because Tracleer is covered by most insurances, including Medicare Part D plans. It does take a very specific diagnosis and process to get that coverage but it is there. As it and Revatio are the two standard medications for PH, I can't imagine it not being covered for PH. Now, of course, I'm making the assumption you're getting it prescribed for PH. If you're getting it for PF instead then it is not yet approved.So, case one, try your insurer if you have one. If not, I'd go to Tracleer themselves at http://www.tracleer .com/default. asp?page= Patients_ GetTracleer Patients who are uninsured or who need help paying for their medication may qualify to receive financial assistance for Tracleer. Call T.A.P. for details. To contact T.A.P., call toll-free at 1-.If you're wanting it for PF instead of PH then the studies recruiting just for PF are no longer recruiting. There are still some clinical trials open for those with PH and PF. Here is a link to all those trials:http://clinicaltria ls.gov/ct2/ results?term= bosentanOne last point is that if for some strange reason you're insured and your company doesn't cover it, you might talk to your doctor about Revatio as an alternative. >> Hi, my name is laura Getz, some of you may remember me. I just joined the list.> My pulmonologist precribed for me Tracleer, but we have made some research about thios med and we found out that it cost about 5000 por month! that is an amount of money we coulnd't pay! now, we also laerned that they manufacturer has I think two chariti organizations that MAY help you to pay for your tracleer, but there is nothing certain.> > My question is to those who have gone trhoug the process of getting tracleer, if your insurance did not cover this med, how did you get the medicine? how much COULD one have to pay? Iam afraid of signing the paper where I consent to enter the Tracleer program, because it says that the manufacturer is not obligated to pay for my med, and it says at the very bottom that i will be responsible to pay for my meds. > > Please somebody help me out!> > getz 35> scleroderma, pulmonary fibrosis, pulmonary hipertension> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Thank you for your info, I have the Louisiana High Risk Health Plan, is administrated by Covenant, we don't know yet if this med is covered by the insurance. laura getz scleroderma, pulm fibrosis pulm hipert Subject: Re: tracleerTo: Breathe-Support Date: Friday, January 9, 2009, 11:00 AM First, do you have insurance and they refused or do you not have insurance? I ask because Tracleer is covered by most insurances, including Medicare Part D plans. It does take a very specific diagnosis and process to get that coverage but it is there. As it and Revatio are the two standard medications for PH, I can't imagine it not being covered for PH. Now, of course, I'm making the assumption you're getting it prescribed for PH. If you're getting it for PF instead then it is not yet approved.So, case one, try your insurer if you have one. If not, I'd go to Tracleer themselves at http://www.tracleer .com/default. asp?page= Patients_ GetTracleer Patients who are uninsured or who need help paying for their medication may qualify to receive financial assistance for Tracleer. Call T.A.P. for details. To contact T.A.P., call toll-free at 1-.If you're wanting it for PF instead of PH then the studies recruiting just for PF are no longer recruiting. There are still some clinical trials open for those with PH and PF. Here is a link to all those trials:http://clinicaltria ls.gov/ct2/ results?term= bosentanOne last point is that if for some strange reason you're insured and your company doesn't cover it, you might talk to your doctor about Revatio as an alternative. >> Hi, my name is laura Getz, some of you may remember me. I just joined the list.> My pulmonologist precribed for me Tracleer, but we have made some research about thios med and we found out that it cost about 5000 por month! that is an amount of money we coulnd't pay! now, we also laerned that they manufacturer has I think two chariti organizations that MAY help you to pay for your tracleer, but there is nothing certain.> > My question is to those who have gone trhoug the process of getting tracleer, if your insurance did not cover this med, how did you get the medicine? how much COULD one have to pay? Iam afraid of signing the paper where I consent to enter the Tracleer program, because it says that the manufacturer is not obligated to pay for my med, and it says at the very bottom that i will be responsible to pay for my meds. > > Please somebody help me out!> > getz 35> scleroderma, pulmonary fibrosis, pulmonary hipertension> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2009 Report Share Posted January 22, 2009 Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 I am also taking Tracleer and there is an organization to help those who cannot afford the medication. Their name is "Caring Voice Coaliltion". The phone number is . They will take information from you regarding your income and insurance, etc. Then, they will tell you how much they will help you with. I hope they are able to help you. Good luck. God Bless, Tina OH IPF 04/07 PH 11/07; listed for transplant 06/08 Tina Subject: Re: tracleerTo: Breathe-Support Date: Thursday, January 22, 2009, 10:41 PM Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 , I am so sorry you are going through this. I don't know if you've already looked into this but there is something called the Tracleer Access Program which offers financial assistance for those who can't afford the medication. The toll free number is 1-. I don't know if they can help you but I hope so. Tina's suggestion of calling Caring Voice is a good one. They might be able to help you. Please keep us posted! We'll be thinking of you! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, January 22, 2009 10:41:02 PMSubject: Re: tracleer Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hello , My name is Margaret and I have been taking tracleer for two years now. Mine comes from Caremark, which I believe is a branch of CVS pharmacies. I was sent information by Actelion, the manufacturer, about their Sure Steps program. They refer to Sure Steps as 'your pathway of support.' One of their enclosures with my orders lists 'the tracleer access program.' They have a toll free number to call and a web sight. 1- and www.ActelionSureSteps.com to sign up for the program. There is a nurse counselor that you can talk with about your PH, tracleer, insurance and the access program at the toll free number between 8 a.m. and 11 p.m. ET. I have both medicare and medicaid now so everything goes smoothly for me. Too bad you have to get to this point to get help. I don't know anything about the Louisiana health plan but when my best friend in California was diagnosed with her type of cancer, even though her husband had a good income and they had a home and cars, somehow she was covered by medical. That was about twenty years ago though. Sometimes you have to do what you have to do to get medical coverage and I believe if you can't work per doctor's orders; there is no shame in going on adult public assistance in order to get medicare. This is my third day as a member of the group and I have read everything on line in the emails so I may be mixing up information but did you say your husband was also out of work and you have a child? If so, if your household income is below a certain limit you all would be eligible for assistance; perhaps even housing assistance. I don't want to give you false hope but it is worth looking in to. Have you checked to see if you have any unemployment benefits coming? I am really stretching now; did you say your son is autistic? It may not have been you but if it was, there are free educational programs through the schools; it is special education mandated by law. I hope you are able to look into some of these things, at least. I have been around the block a few times both professionally and personally so good luck to you. Margaret To: Breathe-Support Sent: Thursday, January 22, 2009 6:41:02 PMSubject: Re: tracleer Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hello , My name is Margaret and I have been taking tracleer for two years now. Mine comes from Caremark, which I believe is a branch of CVS pharmacies. I was sent information by Actelion, the manufacturer, about their Sure Steps program. They refer to Sure Steps as 'your pathway of support.' One of their enclosures with my orders lists 'the tracleer access program.' They have a toll free number to call and a web sight. 1- and www.ActelionSureSteps.com to sign up for the program. There is a nurse counselor that you can talk with about your PH, tracleer, insurance and the access program at the toll free number between 8 a.m. and 11 p.m. ET. I have both medicare and medicaid now so everything goes smoothly for me. Too bad you have to get to this point to get help. I don't know anything about the Louisiana health plan but when my best friend in California was diagnosed with her type of cancer, even though her husband had a good income and they had a home and cars, somehow she was covered by medical. That was about twenty years ago though. Sometimes you have to do what you have to do to get medical coverage and I believe if you can't work per doctor's orders; there is no shame in going on adult public assistance in order to get medicare. This is my third day as a member of the group and I have read everything on line in the emails so I may be mixing up information but did you say your husband was also out of work and you have a child? If so, if your household income is below a certain limit you all would be eligible for assistance; perhaps even housing assistance. I don't want to give you false hope but it is worth looking in to. Have you checked to see if you have any unemployment benefits coming? I am really stretching now; did you say your son is autistic? It may not have been you but if it was, there are free educational programs through the schools; it is special education mandated by law. I hope you are able to look into some of these things, at least. I have been around the block a few times both professionally and personally so good luck to you. Margaret To: Breathe-Support Sent: Thursday, January 22, 2009 6:41:02 PMSubject: Re: tracleer Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hello , My name is Margaret and I have been taking tracleer for two years now. Mine comes from Caremark, which I beleave is a branch of CVS pharmacies. I was sent information by Actelion, the manafacturer, about their Sure Steps program. They refer to Sure Steps as 'your pathway of support.' One of their enclosures with my orders lists 'the tracleer access program.' They have a toll free number to call and a web sight. 1- and www.ActelionSureSteps.com to sign up for the program. There is a nurse counselor that you can talk with about your PH, tracleer, insurance and the access program at the toll free number between 8 a.m. and 11 p.m. ET. I have both medicare and medicaid now so everything goes smoothly for me. Too bad you have to get to this point to get help. I don't know anything about the Lousiana health plan but when my best friend in California was diagnosed with her type of cancer, eventhough her husband had a good income and they had a home and cars, somehow she was covered by medical. That was about twenty years ago though. To: Breathe-Support Sent: Thursday, January 22, 2009 6:41:02 PMSubject: Re: tracleer Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hello , My name is Margaret and I have been taking tracleer for two years now. Mine comes from Caremark, which I beleave is a branch of CVS pharmacies. I was sent information by Actelion, the manafacturer, about their Sure Steps program. They refer to Sure Steps as 'your pathway of support.' One of their enclosures with my orders lists 'the tracleer access program.' They have a toll free number to call and a web sight. 1- and www.ActelionSureSteps.com to sign up for the program. There is a nurse counselor that you can talk with about your PH, tracleer, insurance and the access program at the toll free number between 8 a.m. and 11 p.m. ET. I have both medicare and medicaid now so everything goes smoothly for me. Too bad you have to get to this point to get help. I don't know anything about the Lousiana health plan but when my best friend in California was diagnosed with her type of cancer, eventhough her husband had a good income and they had a home and cars, somehow she was covered by medical. That was about twenty years ago though. To: Breathe-Support Sent: Thursday, January 22, 2009 6:41:02 PMSubject: Re: tracleer Hi, my name is laura, my doctor prescribed tracleer for me, I have the Louisiana State Health plan, they told me that they have aproved my medication but I still have to pay the remaining 1800 of the cost of the med. there is a limit of 15000 that the insurance is obligated to pay for me, after the 15000 i will have to pay the full cost of the med. I was wondering how could I get help to pay for my meds. I know someone else from the group is taking tracleer too. I have no medicare, iam only 35, Iam on oxigen 24/7. I am no a USA citizen i am a permanent resident, I have only 3 years in this country, when i came here i didn't know I was sick, otherwise i would've stay in my country. Please if anybody knows a telephone number where I could call to get help for my meds. let me know. Thank you all. -- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.