Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Someone on the Forum (maybe Laurie?) told me that some insurance companies will pay for Q gel with a mito disease diagnosis because it has an " orphan drug " status. Just got off the phone trying to find out if my insurance company will pay for Q gel because it has orphan drug status and thay haven't a clue as to what I'm talking about. Neither, to be honest, do I. Can anybody clue me in? Thanks, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 It's worth trying. A minority of patients have been able to get insurance coverage for Q10. Many carriers will not cover it yet because Tishcon is still in the process of getting final FDA approval. Their Q10 product has been granted orphan drug status for treatment of mitochondrial cytopathies, congestive heart failure and Huntington's disease, but they must go through several years of clinical trials to prove efficacy before final FDA approval is granted. Below I am pasting links with info about the orphan drug status of Tishcon's product. There used to be a copy of the official FDA document on Q10 on the FDA site, but it seems to have been taken down. Several of us have not been able to find it recently. Carnitor, the rx form of L-carnitine developed by Sigma-Tau, is another nutritional supplement that has been granted orphan drug status. Carnitor has been available by prescription as an orphan drug since mid 1980s. Barbara http://www.newhope.com/nutritionsciencenews/NSN_backs/May_00/natnews_ 1.cfm http://www.biospace.com/news_story.cfm?StoryID=15795920&full=1 http://www.mercola.com/fcgi/pf/2000/jul/30/coenzyme_q10.htm > Someone on the Forum (maybe Laurie?) told me that some > insurance companies will pay for Q gel with a mito disease > diagnosis because it has an " orphan drug " status. Just got off > the phone trying to find out if my insurance company will pay for > Q gel because it has orphan drug status and thay haven't a clue > as to what I'm talking about. Neither, to be honest, do I. Can > anybody clue me in? > > Thanks, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Anita, I have the documents that Janet Sample sent to me for the insurance company. I f you want me to mail them to you sent me your address at betsys690@... and I will mail them to you. Betsy QGel orphan drug status? Someone on the Forum (maybe Laurie?) told me that some insurance companies will pay for Q gel with a mito disease diagnosis because it has an " orphan drug " status. Just got off the phone trying to find out if my insurance company will pay for Q gel because it has orphan drug status and thay haven't a clue as to what I'm talking about. Neither, to be honest, do I. Can anybody clue me in? Thanks, Anita Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Anita I think it was Janet Sample that got coverage under the orphan drug status. I have had mine partially covered since I started using it. They are paying for it under durable medical goods and not as a prescription. Orphan drugs are those that are used for low incidence diseases. These diseases are called orphan diseases. I think that it won't be terribly long before they see it for non-orphan status. They are now using for ALS and Parkinson's besides the one's Barbara mentioned. I think they are also trying it for SMA as well. All probably low incidence diseases, but together, a big chunk of the population. laurie > > Reply-To: > Date: Mon, 07 Jun 2004 15:03:17 -0000 > To: > Subject: QGel orphan drug status? > > Someone on the Forum (maybe Laurie?) told me that some > insurance companies will pay for Q gel with a mito disease > diagnosis because it has an " orphan drug " status. Just got off > the phone trying to find out if my insurance company will pay for > Q gel because it has orphan drug status and thay haven't a clue > as to what I'm talking about. Neither, to be honest, do I. Can > anybody clue me in? > > Thanks, Anita > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Anita, I get it paid for under orphan drug status by Tricare, military insurance. Barbara posted some good stuff. As she said, it does not have final approval yet but in the appeal process Tricare basically said since I have MELAS and my mother and sister both died from it they would allow it. I have to pay the copay for it. I found out about them paying for orphan drugs in an excerpt from the handbook they sent in 2001 showing that they would not pay for vitamin supplements and when they would pay for certain drugs. I sent that to them when I first tried to get the Qgel paid for. So if you have a handbook as to what your insurance covers try looking thru that--it may be in the fine print. Or, ask them to send you a copy of when they will pay for prescription drugs. I do not know if this helps or not. I can fax you over a copy of what I was sent and sent back to them in the appeal. Janet Sample QGel orphan drug status? > Someone on the Forum (maybe Laurie?) told me that some > insurance companies will pay for Q gel with a mito disease > diagnosis because it has an " orphan drug " status. Just got off > the phone trying to find out if my insurance company will pay for > Q gel because it has orphan drug status and thay haven't a clue > as to what I'm talking about. Neither, to be honest, do I. Can > anybody clue me in? > > Thanks, Anita > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 I still have the paperwork if anyone else needs it faxed or mailed to them. I actually now just write please pay for under orphan drug status on the qgel receipt and they have paid the last two times. I am ordering one more time this month and then in July starts a new carrier for the Tricare. I hope I do not have to keep appealling the qgel with them. Anyway, send me your addresses whoever wants a packet of paperwork to overload the insurance company with. Tell them if the picky military insurance will pay for it they should. Janet Sample QGel orphan drug status? > > > > Someone on the Forum (maybe Laurie?) told me that some > > insurance companies will pay for Q gel with a mito disease > > diagnosis because it has an " orphan drug " status. Just got off > > the phone trying to find out if my insurance company will pay for > > Q gel because it has orphan drug status and thay haven't a clue > > as to what I'm talking about. Neither, to be honest, do I. Can > > anybody clue me in? > > > > Thanks, Anita > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi Janet, Thanks so much for your info and kind offer to FAX me a copy of your appeal. I have printed out your info and am just going to wait a bit untiI talk to my doc, talk to my friend who's a pharmacist and read the fine print in my insurance policy. It's Blue Cross Blue Shield and over the years they have been VERY good to me. If it turns out that I could use your appeal info, it's nice to know that you'd be wiling to share it with me. Thanks and Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Anita, Just let me know. I have it in a special file. Janet Re: QGel orphan drug status? > Hi Janet, Thanks so much for your info and kind offer to FAX me > a copy of your appeal. I have printed out your info and am just > going to wait a bit untiI talk to my doc, talk to my friend who's a > pharmacist and read the fine print in my insurance policy. It's > Blue Cross Blue Shield and over the years they have been VERY > good to me. If it turns out that I could use your appeal info, it's > nice to know that you'd be wiling to share it with me. > > Thanks and Best Wishes, > Anita > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
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