Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Maybe we should contact Sigma Tau company and ask what steps would be taken to have CoQ follow in the same pattern as the carnitor and is that something they would be looking into in the future. If that's not a dumb idea I guess I could email from their website with the question. S. Re: Insurance Approval > > > > >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 June 16, 1999 Report Share Posted June 16, 1999 Maybe we should contact Sigma Tau company and ask what steps would be taken to have CoQ follow in the same pattern as the carnitor and is that something they would be looking into in the future. If that's not a dumb idea I guess I could email from their website with the question. S. Re: Insurance Approval > > > > >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 June 19, 1999 Report Share Posted June 19, 1999 Alice, do you mean a seperate list for information gathering, making the mito basic notebk and working on things like the insurance questions? Isn't the UMDF etc. supposed to be doing this work? Don't take this wrong, I'm asking as in should they but they don't seem to be going at it in the same way or are they not even doing the same thing or what? Should we be presenting our ideas to them to do? I think this list comes up with these fantastic ideas but then everyone is so overwhelmed with living we don't have time or energy to follow thru with them where a set up group like them (or as you say within us) may be able to get these things actually done. So whichever works is fine with me. But I hate to see the good ideas die when they are so needed. S. Re: Insurance Approval > > >>From: Hilandgang@... >> >>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 15, 1999 Report Share Posted August 15, 1999 We need to be sure that they > realize that the decision not to cover the supplements is clearly > discriminatory. Ken, Anne, Merril, Jeannine - I think you could all > help us with this wording and perhaps you could also help us decide where to > start with this process. Alice, do you think we need to have a letter and bibliography of articles supporting the use of supplements on the IMDN web site that people could print off and use in their appeals to insurance? Sharon Dadinsky?//Would you have any legal ideas for discrimination wording? I think one issue is that we all have such different insurance companies who seem to work things differently.What about a list of people who have had success and which insurance company they work with so that others could contact those more applicable to them. (For example if anyone needs help with the snakes at Humana call me - we always win but they are forever trying to deny something and I have a pretty good system for dealing with their evil ways! ). Anyway, I am more than happy to help however needed. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 We need to be sure that they > realize that the decision not to cover the supplements is clearly > discriminatory. Ken, Anne, Merril, Jeannine - I think you could all > help us with this wording and perhaps you could also help us decide where to > start with this process. Alice, do you think we need to have a letter and bibliography of articles supporting the use of supplements on the IMDN web site that people could print off and use in their appeals to insurance? Sharon Dadinsky?//Would you have any legal ideas for discrimination wording? I think one issue is that we all have such different insurance companies who seem to work things differently.What about a list of people who have had success and which insurance company they work with so that others could contact those more applicable to them. (For example if anyone needs help with the snakes at Humana call me - we always win but they are forever trying to deny something and I have a pretty good system for dealing with their evil ways! ). Anyway, I am more than happy to help however needed. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 This is great, Anne. I'm glad you replied. This is so important for everyone. Let's keep this thread going until we have met the goal. I know we can do it. Alice Re: Insurance Approval > > >We need to be sure that they >> realize that the decision not to cover the supplements is clearly >> discriminatory. Ken, Anne, Merril, Jeannine - I think you could >all >> help us with this wording and perhaps you could also help us decide where >to >> start with this process. > > >Alice, do you think we need to have a letter and bibliography of articles >supporting the use of supplements on the IMDN web site that people could >print off and use in their appeals to insurance? > > Sharon Dadinsky?//Would you have any legal ideas for discrimination >wording? > > I think one issue is that we all have such different insurance companies >who seem to work things differently.What about a list of people who have >had success and which insurance company they work with so that others could >contact those more applicable to them. (For example if anyone needs help >with the snakes at Humana call me - we always win but they are forever >trying to deny something and I have a pretty good system for dealing with >their evil ways! ). > >Anyway, I am more than happy to help however needed. Anne > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 This is great, Anne. I'm glad you replied. This is so important for everyone. Let's keep this thread going until we have met the goal. I know we can do it. Alice Re: Insurance Approval > > >We need to be sure that they >> realize that the decision not to cover the supplements is clearly >> discriminatory. Ken, Anne, Merril, Jeannine - I think you could >all >> help us with this wording and perhaps you could also help us decide where >to >> start with this process. > > >Alice, do you think we need to have a letter and bibliography of articles >supporting the use of supplements on the IMDN web site that people could >print off and use in their appeals to insurance? > > Sharon Dadinsky?//Would you have any legal ideas for discrimination >wording? > > I think one issue is that we all have such different insurance companies >who seem to work things differently.What about a list of people who have >had success and which insurance company they work with so that others could >contact those more applicable to them. (For example if anyone needs help >with the snakes at Humana call me - we always win but they are forever >trying to deny something and I have a pretty good system for dealing with >their evil ways! ). > >Anyway, I am more than happy to help however needed. Anne > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Thanks, . This is exactly why I sent the post. We are big enough and strong enough to have an impact - I believe. I appreciate your support. Alice Insurance Approval > > >> >> >>Hi, >> >>I wanted to let everyone know that I received a call from my surgeon's >>office yesterday notifying me that my insurance carrier has approved >payment >>for the Cochlear Implant surgery, which I will have on 9/13. This is a >huge >>surprise, as it is considered a hearing aid. >>The request for approval was sent directly from the Cochlear Corp. >> >>The approval came in to pay approximately $700 for the evaluation process - >>$32,000 for the actual implant and hospital stay ( the implant itself costs >>$21,400) and an unlimited amount for the post op work - which includes hook >>up, programing & aural rehabilitation - Prosthetic checkout at $100 an hour >>and Prosthetic Training at $100 an hour. >> >>The Cochlear Corp. made sure everything was covered. I guess the only >thing >>I will have to pay for is the insurance - from the looks of this. >> >>Now - this brings another subject to mind. We all need insurance to cover >>the cost of supplements for Mito treatment but for most of us we have only >>received denial. I believe this is an issue we need to unite on and see >if >>we can get universal coverage for them when dealing with Mito patients. If >>my CI was approved while the insurance company clearly states that they do >>not cover any type of aid - I think - properly worded - we may get the >point >>across, especially if we petition in numbers. We need to be sure that >they >>realize that the decision not to cover the supplements is clearly >>discriminatory. Ken, Anne, Merril, Jeannine - I think you could all >>help us with this wording and perhaps you could also help us decide where >to >>start with this process. >> >>Thoughts? >> >><smile> >> >>Alice >> >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 You go Alice! That is a good idea! nicole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Anne- Great ideas. I think having a letter and list of articles on the web site would be the way to go. Also the list of companies that have approved payment of supplements and which ones. I know that was the thing that got mine approved (with other stuff). Once they knew that Blue Cross in other areas had approved it, they varified and sent me my approval letter. Janice has much of this information, but we need to have it available to everyone who wants to pursue this. Laurie > Alice, do you think we need to have a letter and bibliography of articles > supporting the use of supplements on the IMDN web site that people could > print off and use in their appeals to insurance? > > Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > > I think one issue is that we all have such different insurance companies > who seem to work things differently.What about a list of people who have > had success and which insurance company they work with so that others could > contact those more applicable to them. (For example if anyone needs help > with the snakes at Humana call me - we always win but they are forever > trying to deny something and I have a pretty good system for dealing with > their evil ways! ). > > Anyway, I am more than happy to help however needed. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Anne- Great ideas. I think having a letter and list of articles on the web site would be the way to go. Also the list of companies that have approved payment of supplements and which ones. I know that was the thing that got mine approved (with other stuff). Once they knew that Blue Cross in other areas had approved it, they varified and sent me my approval letter. Janice has much of this information, but we need to have it available to everyone who wants to pursue this. Laurie > Alice, do you think we need to have a letter and bibliography of articles > supporting the use of supplements on the IMDN web site that people could > print off and use in their appeals to insurance? > > Sharon Dadinsky?//Would you have any legal ideas for discrimination > wording? > > I think one issue is that we all have such different insurance companies > who seem to work things differently.What about a list of people who have > had success and which insurance company they work with so that others could > contact those more applicable to them. (For example if anyone needs help > with the snakes at Humana call me - we always win but they are forever > trying to deny something and I have a pretty good system for dealing with > their evil ways! ). > > Anyway, I am more than happy to help however needed. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 More great info, Laurie. Since I can't hear on the phone, could you call Janice and ask her to forward that to me. I have a fax in my home and she could fax it. I will give her the number if she could e me here. We are going to make this happen!! Alice Re: Insurance Approval > > >Anne- > >Great ideas. I think having a letter and list of articles on the web site would be the way to go. > >Also the list of companies that have approved payment of supplements and which ones. I know that was the >thing that got mine approved (with other stuff). Once they knew that Blue Cross in other areas had >approved it, they varified and sent me my approval letter. Janice has much of this information, but we >need to have it available to everyone who wants to pursue this. > >Laurie > >> Alice, do you think we need to have a letter and bibliography of articles >> supporting the use of supplements on the IMDN web site that people could >> print off and use in their appeals to insurance? >> >> Sharon Dadinsky?//Would you have any legal ideas for discrimination >> wording? >> >> I think one issue is that we all have such different insurance companies >> who seem to work things differently.What about a list of people who have >> had success and which insurance company they work with so that others could >> contact those more applicable to them. (For example if anyone needs help >> with the snakes at Humana call me - we always win but they are forever >> trying to deny something and I have a pretty good system for dealing with >> their evil ways! ). >> >> Anyway, I am more than happy to help however needed. Anne > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Sue- My Blue Cross in Michigan is reimbursing me 90% for CoQ10. It is through a teacher's union (state branch of NEA) plan that is underwritten by Blue Cross. Laurie > 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Something to also note here -- For those states who have family support or Medicaid waiver programs, often those will cover things that typical insurances do not cover. Family support would certainly be something that could cover supplements. Additionally, there is a Handicapped Children's Program (named something else though probably) in every state that is also income related - higher than Medicaid or SSI usually and they cover things that Medicaid would not such as deductibles, copays, durable equipment etc. If you need to find programs like these in your state, please email me and I'll look for them for you. If your state has a Partners in Policymaking or similar program it might be helpful to connect with someone from it in your area to see what you might not be getting news about. It seems that those with visible disabilities at birth or like diagnoses (i.e. Down Syndrome) are better connected to resources. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Aetna PPO in California covered all of Lexi's meds: Carntine, CoQ10, Riboflavin and the other well-accepted ones Dilantin, Cissipride, etc. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Aetna PPO in California covered all of Lexi's meds: Carntine, CoQ10, Riboflavin and the other well-accepted ones Dilantin, Cissipride, etc. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Aetna PPO in California covered all of Lexi's meds: Carntine, CoQ10, Riboflavin and the other well-accepted ones Dilantin, Cissipride, etc. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 99-08-17 10:34:39 EDT, you write: << Aetna PPO in California covered all of Lexi's meds: Carntine, CoQ10, Riboflavin and the other well-accepted ones Dilantin, Cissipride, etc. ruth >> Orion had Keystone Mercy. They covered all of his meds, which were: Phenobarb, Zantac, Reglan, Biotin, Poly Vi Sol, Baclofen, Carnitine, Vit C, Coenzyme Q, Thiamine, Riboflavin, and Chloral Hydrate. Eventually he was switched to Prilosec and Bethanechol instead of Zantac and Reglan for his reflux. The only med we had a problem getting approval for was CoQ, but after a letter of necessity from his doctor, they did approve it, and sent a reimbursment for the money we had paid for it up until then. Orion took all his meds through his NG tube... Orion's Mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 What a wonderful field you are in, Ruth. You must sign. Being a late deafened adult, I have yet to master the art of signing but it is beautiful to watch. I am able to understand an interpreter when they sign with lip reading. In fact, I find it much easier to follow the conversation if someone is doing that for me - even in a crowed, noisy place. The CI is exciting and scary at the same time. I am looking forward to 9/14. I wonder why. ;-) You might like to communicate with a little. She is on this list and taught the deaf for years. Also, Laurie, works with disabled children - some who have hearing problems. The three of you have a lot in common. I hope we can have an impact on the insurance issues. The thread has died down and I am wondering if we need to form a internet committee to make this happen. It is important to a lot of people. We could have a seperate listserve for that purpose only. I would be happy to set it up. I know we can't keep posting the ideas to this list. Opinions-volunteers? Just let me know. <smile> Alice Re: Insurance Approval >From: Hilandgang@... > >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 17, 1999 Report Share Posted August 17, 1999 What a wonderful field you are in, Ruth. You must sign. Being a late deafened adult, I have yet to master the art of signing but it is beautiful to watch. I am able to understand an interpreter when they sign with lip reading. In fact, I find it much easier to follow the conversation if someone is doing that for me - even in a crowed, noisy place. The CI is exciting and scary at the same time. I am looking forward to 9/14. I wonder why. ;-) You might like to communicate with a little. She is on this list and taught the deaf for years. Also, Laurie, works with disabled children - some who have hearing problems. The three of you have a lot in common. I hope we can have an impact on the insurance issues. The thread has died down and I am wondering if we need to form a internet committee to make this happen. It is important to a lot of people. We could have a seperate listserve for that purpose only. I would be happy to set it up. I know we can't keep posting the ideas to this list. Opinions-volunteers? Just let me know. <smile> Alice Re: Insurance Approval >From: Hilandgang@... > >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 17, 1999 Report Share Posted August 17, 1999 What a wonderful field you are in, Ruth. You must sign. Being a late deafened adult, I have yet to master the art of signing but it is beautiful to watch. I am able to understand an interpreter when they sign with lip reading. In fact, I find it much easier to follow the conversation if someone is doing that for me - even in a crowed, noisy place. The CI is exciting and scary at the same time. I am looking forward to 9/14. I wonder why. ;-) You might like to communicate with a little. She is on this list and taught the deaf for years. Also, Laurie, works with disabled children - some who have hearing problems. The three of you have a lot in common. I hope we can have an impact on the insurance issues. The thread has died down and I am wondering if we need to form a internet committee to make this happen. It is important to a lot of people. We could have a seperate listserve for that purpose only. I would be happy to set it up. I know we can't keep posting the ideas to this list. Opinions-volunteers? Just let me know. <smile> Alice Re: Insurance Approval >From: Hilandgang@... > >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 18, 1999 Report Share Posted August 18, 1999 Dear Alice, Thanks for your kind post. Please count me in for the committee. I would very much like to serve on this and am willing to do whatever is necessary. I do sign (SEE and ASL) and do oral interpreting as well. My experience has been that by providing the children with as many avenues as I can, they will begin to pick up language in the way that works best for them. I was just at the Cochlear Implant Club International convention in Manhattan Beach, CA and learned SOOO much about the future of CI's and the revolutionary technology that is slowly but surely changing the face of deafness. Best wishes on your upcoming surgery date--I'll be praying for you!! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Laurie, 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. Is this how others of you went about it? is also covered on United HealthCare and TennCare (which is Tennessee's Medicaid). I'll be happy to help in any way I can and appreciate all that you are getting together for all of us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Laurie, 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. Is this how others of you went about it? is also covered on United HealthCare and TennCare (which is Tennessee's Medicaid). I'll be happy to help in any way I can and appreciate all that you are getting together for all of us! Quote Link to comment Share on other sites More sharing options...
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