Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Laurie: Thanks so much. I really appreciate your help. I have been so crazy here with the boys, CLayton has therapy 3 days a week - sometimes 2 times a day, Clayton and Cole take a little Gym class and Jake ice skates 4 days a week, AND I work part-time as a general counsel of a corporation - I barely have time to read my e-mail anymore much less do research. I am so behind on so many things. THanks again. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Not sure what Alice was thinking of. I doubt very much we could say much about most of the supplements as they are unproven even though empirically they work. But the CoQ has been studied and if it is the only researched and scientifically proven treatment that makes a difference for Mito then to me it would be discriminatory that it is not paid for simply because it is over the counter. Also it has to be taken in such excessive amounts which is beyond the scope of what most over the counter drugs end up being. Anyone know how carnitor came to be script and not simply OTC. This is what I would like to see happen with CoQ as not only would it be covered but there would be a guarantee of quality and amount of CoQ . Anne ---------- > From: SDidinsky@... > To: Mitoonelist > Subject: Re: Insurance Approval > Date: Sunday, August 15, 1999 1:22 PM > > From: SDidinsky@... > > In a message dated 8/14/99 10:14:46 PM Eastern Daylight Time, > juhlmann@... writes: > > << Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > >> > ALso, I forgot - what are your ideas for discrimination - that they refuse to > pay because they are not prescriptions - what are you theories for > discrimination and I will gladly put some legal language together. > > Love > Sharon > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Not sure what Alice was thinking of. I doubt very much we could say much about most of the supplements as they are unproven even though empirically they work. But the CoQ has been studied and if it is the only researched and scientifically proven treatment that makes a difference for Mito then to me it would be discriminatory that it is not paid for simply because it is over the counter. Also it has to be taken in such excessive amounts which is beyond the scope of what most over the counter drugs end up being. Anyone know how carnitor came to be script and not simply OTC. This is what I would like to see happen with CoQ as not only would it be covered but there would be a guarantee of quality and amount of CoQ . Anne ---------- > From: SDidinsky@... > To: Mitoonelist > Subject: Re: Insurance Approval > Date: Sunday, August 15, 1999 1:22 PM > > From: SDidinsky@... > > In a message dated 8/14/99 10:14:46 PM Eastern Daylight Time, > juhlmann@... writes: > > << Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > >> > ALso, I forgot - what are your ideas for discrimination - that they refuse to > pay because they are not prescriptions - what are you theories for > discrimination and I will gladly put some legal language together. > > Love > Sharon > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Not sure what Alice was thinking of. I doubt very much we could say much about most of the supplements as they are unproven even though empirically they work. But the CoQ has been studied and if it is the only researched and scientifically proven treatment that makes a difference for Mito then to me it would be discriminatory that it is not paid for simply because it is over the counter. Also it has to be taken in such excessive amounts which is beyond the scope of what most over the counter drugs end up being. Anyone know how carnitor came to be script and not simply OTC. This is what I would like to see happen with CoQ as not only would it be covered but there would be a guarantee of quality and amount of CoQ . Anne ---------- > From: SDidinsky@... > To: Mitoonelist > Subject: Re: Insurance Approval > Date: Sunday, August 15, 1999 1:22 PM > > From: SDidinsky@... > > In a message dated 8/14/99 10:14:46 PM Eastern Daylight Time, > juhlmann@... writes: > > << Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > >> > ALso, I forgot - what are your ideas for discrimination - that they refuse to > pay because they are not prescriptions - what are you theories for > discrimination and I will gladly put some legal language together. > > Love > Sharon > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Here is the idea about discrimination. The supplements are to a person with Mito as insulin is to a diabetic. There is no other treatment. Thus - to deny a person with Mito coverage for these supplements is indeed discrimination. Alice Re: Insurance Approval >From: SDidinsky@... > >In a message dated 8/14/99 10:14:46 PM Eastern Daylight Time, >juhlmann@... writes: > ><< Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > >> >ALso, I forgot - what are your ideas for discrimination - that they refuse to >pay because they are not prescriptions - what are you theories for >discrimination and I will gladly put some legal language together. > >Love >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi Everyone, Not that I'm against what you are trying to do here (I am in the process of getting Nevada Medicaid to approve the CoQ and B-50's for my kids), but to compare CoQ to insulin is sort of a reach. Insulin is not available over the counter and it's proven to help with diabetes, CoQ is not PROVEN to help with anything. I mean it might help, but not on the same level as insulin. Now there is research done by that Vitaline company and in their literature they do refer to several government agencies using their formulas (not sure if they use CoQ specifically) so maybe you could use that. My next fight is going to be with Tricare and getting them to approve CoQ. I've been told they don't cover it because it's OTC. If anyone has any info in that regard, could you pass it my way? ) Good luck and if I get any response from Medicaid or Tricare I will be sure to post. Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Pennsylvania Medicaid pays for Alisons CoQ10, Vit. C and E, B1 and B2. Her Aetna USHealthcare refused to pay for over the counter supplements. Barbara mom to Alison/age 22/melas liver transplant due to depakote toxicity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Pennsylvania Medicaid pays for Alisons CoQ10, Vit. C and E, B1 and B2. Her Aetna USHealthcare refused to pay for over the counter supplements. Barbara mom to Alison/age 22/melas liver transplant due to depakote toxicity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Pennsylvania Medicaid pays for Alisons CoQ10, Vit. C and E, B1 and B2. Her Aetna USHealthcare refused to pay for over the counter supplements. Barbara mom to Alison/age 22/melas liver transplant due to depakote toxicity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Anne and Lou Juhlmann wrote: > Anyone know how carnitor came to be script and not simply OTC. This is > what I would like to see happen with CoQ as not only would it be covered > but there would be a guarantee of quality and amount of CoQ . Carnitor was OTC and it became an orphan drug, basically out of the kindness of Sigma Tau's gigantic heart. It is still OTC, but because the need for it can become life threatening in certain metabolic diseases, they took it on and decided to take the responsiblity for producing it via prescription. Eventually I suspect that Co Q will also become prescription. Several of our docs have suggested the same thing. But the testing will be years away, I'm afraid. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Anne and Lou Juhlmann wrote: > Anyone know how carnitor came to be script and not simply OTC. This is > what I would like to see happen with CoQ as not only would it be covered > but there would be a guarantee of quality and amount of CoQ . Carnitor was OTC and it became an orphan drug, basically out of the kindness of Sigma Tau's gigantic heart. It is still OTC, but because the need for it can become life threatening in certain metabolic diseases, they took it on and decided to take the responsiblity for producing it via prescription. Eventually I suspect that Co Q will also become prescription. Several of our docs have suggested the same thing. But the testing will be years away, I'm afraid. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Anne and Lou Juhlmann wrote: > Anyone know how carnitor came to be script and not simply OTC. This is > what I would like to see happen with CoQ as not only would it be covered > but there would be a guarantee of quality and amount of CoQ . Carnitor was OTC and it became an orphan drug, basically out of the kindness of Sigma Tau's gigantic heart. It is still OTC, but because the need for it can become life threatening in certain metabolic diseases, they took it on and decided to take the responsiblity for producing it via prescription. Eventually I suspect that Co Q will also become prescription. Several of our docs have suggested the same thing. But the testing will be years away, I'm afraid. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Alice- My sister has been trying to get a sample of the letter, the list of articles and insurance info from Janice. So far no luck. I don't think my calling would be beneficial. Sorry. Laurie > More great info, Laurie. Since I can't hear on the phone, could you call > Janice and ask her to forward that to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Thanks anyway, Laurie. AA Re: Insurance Approval > > >Alice- > >My sister has been trying to get a sample of the letter, the list of articles and insurance info from >Janice. So far no luck. I don't think my calling would be beneficial. Sorry. > >Laurie > >> More great info, Laurie. Since I can't hear on the phone, could you call >> Janice and ask her to forward that to me. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Sharon- I just went to some of the med article sites like PubMed and did searches for CoQ10. I found many articles and abstracts. I then ordered a few, depending on what was in the abstract. Many of them have to do with the heart, but since I have some heart involvement, I also included some of these. I hope this helps. Laurie > I am sure that I can come up with some. i am about to start the process to > fight with my insurance company to pay for CLayton's supplements. I am going > to be drafting a letter BUT I need some help with locating the articles. > Anyone have locations where I can find the articles. Clayton is on Co-Q, > Alpha lipoic acid, thyimine, VItamins C & E. > > Love, > Sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Anne- That is a good idea about Carnitor. I wonder if someone could contact Sigma Tau. They seem to be very patient oriented. Laurie > Anyone know how carnitor came to be script and not simply OTC. This is > what I would like to see happen with CoQ as not only would it be covered > but there would be a guarantee of quality and amount of CoQ . > > Anne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Great!! Thanks. Alice Re: Insurance Approval >From: SDidinsky@... > >In a message dated 8/15/99 4:54:01 PM Eastern Daylight Time, >A@... writes: > ><< > The supplements are to a person with Mito as insulin is to a diabetic. > There is no other treatment. Thus - to deny a person with Mito coverage for > these supplements is indeed discrimination. > >> > >No problem ALice - I will work this week - time providing oin some legal >language that you can use. I will e-mail it to you directly first. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Great!! Thanks. Alice Re: Insurance Approval >From: SDidinsky@... > >In a message dated 8/15/99 4:54:01 PM Eastern Daylight Time, >A@... writes: > ><< > The supplements are to a person with Mito as insulin is to a diabetic. > There is no other treatment. Thus - to deny a person with Mito coverage for > these supplements is indeed discrimination. > >> > >No problem ALice - I will work this week - time providing oin some legal >language that you can use. I will e-mail it to you directly first. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Great!! Thanks. Alice Re: Insurance Approval >From: SDidinsky@... > >In a message dated 8/15/99 4:54:01 PM Eastern Daylight Time, >A@... writes: > ><< > The supplements are to a person with Mito as insulin is to a diabetic. > There is no other treatment. Thus - to deny a person with Mito coverage for > these supplements is indeed discrimination. > >> > >No problem ALice - I will work this week - time providing oin some legal >language that you can use. I will e-mail it to you directly first. > >Love, >Sharon > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi Everyone, I wonder if everyone who has gotten their insurance company to pay for CoQ or any mito supplements could post that to the list right now. Maybe say what state, insurance company, what supplement(s) they're paying for and any specific info they used to get it covered? Would that be too many posts? Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi Everyone, I wonder if everyone who has gotten their insurance company to pay for CoQ or any mito supplements could post that to the list right now. Maybe say what state, insurance company, what supplement(s) they're paying for and any specific info they used to get it covered? Would that be too many posts? Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Alice, I'm excited to hear about your CI--this is my area of speciality as a speech pathologist is whorking with children who are deaf and hard of hearing. If you have any Q's and need a quick answer, jot me a line--maybe I can help. Secondly, I am wholeheartedly in support of the idea of everyone banding together to get the supplements and many other extras paid for that mito patients need. Count me in--just point the way. :}} ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 - > I am in Tennessee and am just getting started with the supplements. We have > Blue Cross and I am getting ready to submit a claim for CoQ via our > pharmacist (who is our best friend and 's god parent). We have a script > from our doctor and our pharmacist suggested we just file the claim, let them > deny it, then appeal. My CoQ10 was approved following a letter from Dr. Shoffner, along with several articles. I never saw what was sent. I do know that the letter included a listing of some of the states in which BC/BS has approved it > I'll be happy to help in any way I can and appreciate all that you are > getting together for all of us! Not sure what you are referring to, since I'm not getting anything together. Maybe it was someone else. Laure Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Laurie- > - > My CoQ10 was approved following a letter from Dr. Shoffner, along with > several articles I never saw > what was sent. I do know that the letter included a listing of some of the > states in which BC/BS has > approved it Thanks - I will ask them if they still have this available. > > I'll be happy to help in any way I can and appreciate all that you are > > getting together for all of us! > > Not sure what you are referring to, since I'm not getting anything together. > Maybe it was someone else. My letter must've been lost in cyberspace - I wrote it during the discussion about trying to get everyone to reply as to whether or not their insurance was paying or not, attempting to get together some " standard " documentation, etc, etc. The " you " I'm referring to was all of the people on the list - being new, I have nothing to offer in the way of how to pursuade an insurance company to pay - but I really appreciate everyone who *has* been that route sharing the info with the rest of us........Sorry about the confusion of the post! Don't know where it's been but it sure waited around before uploading! Thanks again for the above info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 Laurie- > - > My CoQ10 was approved following a letter from Dr. Shoffner, along with > several articles I never saw > what was sent. I do know that the letter included a listing of some of the > states in which BC/BS has > approved it Thanks - I will ask them if they still have this available. > > I'll be happy to help in any way I can and appreciate all that you are > > getting together for all of us! > > Not sure what you are referring to, since I'm not getting anything together. > Maybe it was someone else. My letter must've been lost in cyberspace - I wrote it during the discussion about trying to get everyone to reply as to whether or not their insurance was paying or not, attempting to get together some " standard " documentation, etc, etc. The " you " I'm referring to was all of the people on the list - being new, I have nothing to offer in the way of how to pursuade an insurance company to pay - but I really appreciate everyone who *has* been that route sharing the info with the rest of us........Sorry about the confusion of the post! Don't know where it's been but it sure waited around before uploading! Thanks again for the above info. Quote Link to comment Share on other sites More sharing options...
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