Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hello The posting of the link is greatly appreciated. I have been through four clinical trails since 1993 for HCV. My doctor, Gish from California Pacific Medical Center, recently wrote me a prescription for peg as maintenance. During treatment with peg I was considered a nonresponder even though my RNA count went from 2.5m to 3k. Because of the positive response, however, the doctor determined that maintenance would be beneficial. My insurance, Blue Shield, would not pay for the maintenance treatment. The reason is that peg has not been approved by the FDA for maintenance. The insurance company wanted at least two clinical trails with professional papers that had been published to grant my appeal. Unfortunately, neither my treatment team, nor I, nor my posting an appeal a couple of months back here at this cite, could produce the insurance required published reports. At the suggestion of my doctor I attempted a couple of groups that provide assistance to pay for maintenance. Again, unfortunately, I make too much money for assistance, and not enough to pay for the maintenance. And, I am stage 4 cirrhotic, but thankfully still compensating. One option is to go broke, quit my job, and reapply for assistance. But there is no guarantee that it will be provided. Please keep me in the loop if you have any success or hear anything about maintenance. Thanks, Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Dear Ken, I'm sorry to hear you have been unable to get assistance! If I find anything new on the maintenance subject, I'll let you and everyone know. Hugs, Suzy > Hello > > The posting of the link is greatly appreciated. I have been through > four clinical trails since 1993 for HCV. My doctor, Gish from > California Pacific Medical Center, recently wrote me a prescription for > peg as maintenance. > > During treatment with peg I was considered a nonresponder even though > my RNA count went from 2.5m to 3k. Because of the positive response, > however, the doctor determined that maintenance would be beneficial. > My insurance, Blue Shield, would not pay for the maintenance > treatment. The reason is that peg has not been approved by the FDA for > maintenance. > > The insurance company wanted at least two clinical trails with > professional papers that had been published to grant my appeal. > Unfortunately, neither my treatment team, nor I, nor my posting an > appeal a couple of months back here at this cite, could produce the > insurance required published reports. > > At the suggestion of my doctor I attempted a couple of groups that > provide assistance to pay for maintenance. Again, unfortunately, I > make too much money for assistance, and not enough to pay for the > maintenance. And, I am stage 4 cirrhotic, but thankfully still > compensating. > > One option is to go broke, quit my job, and reapply for assistance. > But there is no guarantee that it will be provided. Please keep me in > the loop if you have any success or hear anything about maintenance. > > Thanks, > > Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi Ken! Dang it! I just had a big, long reply and I accidentaly hit the back back button and lost it all! I am also a stage 4 cirrhotic who is compensating. I also have 3 esophogeal varices which have been tied off and have never bled, porphyria cutanea tarda, low platelet count (56k), and diabetes 2, all of which greatly increase my odds of developing hepatocellular carcinoma (liver cancer). I am thinking of getting all my numbers together and contacting the Dr. of this study ( http://hepcassoc.org/news/article99.html ) and see if he would agree. They used peg-intron mono-therapy at 1/3 the usual dose as a maintenance program and had good results. I am trying to gather my ammo for what I think will be a battle with my medical provider. You think that it would be cheaper for them to stabilize us instead of paying for a liver transplant. I know that they would NEVER think that if we die while waiting, that their cost would be about nothing - lol! If I hear of anymore studies, I will let you know. It will be great day when our government spends as much money to keep us alive as it does in sending our troops off to die. Just what they are dying for, I am not sure. I know it's couldn't be oil... Keep up the good spirits you seem to have and don't give up the fight! Peace, ) > Hello > > The posting of the link is greatly appreciated. I have been through > four clinical trails since 1993 for HCV. My doctor, Gish from > California Pacific Medical Center, recently wrote me a prescription for > peg as maintenance. > > During treatment with peg I was considered a nonresponder even though > my RNA count went from 2.5m to 3k. Because of the positive response, > however, the doctor determined that maintenance would be beneficial. > My insurance, Blue Shield, would not pay for the maintenance > treatment. The reason is that peg has not been approved by the FDA for > maintenance. > > The insurance company wanted at least two clinical trails with > professional papers that had been published to grant my appeal. > Unfortunately, neither my treatment team, nor I, nor my posting an > appeal a couple of months back here at this cite, could produce the > insurance required published reports. > > At the suggestion of my doctor I attempted a couple of groups that > provide assistance to pay for maintenance. Again, unfortunately, I > make too much money for assistance, and not enough to pay for the > maintenance. And, I am stage 4 cirrhotic, but thankfully still > compensating. > > One option is to go broke, quit my job, and reapply for assistance. > But there is no guarantee that it will be provided. Please keep me in > the loop if you have any success or hear anything about maintenance. > > Thanks, > > Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 Sure. The web site is www.achalasia.us Please take a look and let me know what you think. in Suffolk In a message dated 5/31/2006 5:01:22 PM GMT Standard Time, 1x2y3z@... writes: , could you post the URL of your new site? I looked at the Links page and saw many links, but I can't tell which one you mean. What is it called on the Links page?achalasia/linksThank you for taking the time to gather and share useful information. New linkHello everyone. I just want ot let you all know that I have added anew link to our site. , one of our member and myself have beenworking on that site for over two weeks now. We have tried to gatheras much information about Achalasia and place it on one site. I hopeyou will take a look at the site. I want any imput on the site and ifyou want to add any information please feel free to e-mail me atmmueller@... or at jwarren@...This is not a site to take away from this group in any way. I wantthis to be an added resource for this group to use.I hope everyone is doing well. in Suffolk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 , could you post the URL of your new site? I looked at the Links page and saw many links, but I can't tell which one you mean. What is it called on the Links page? achalasia/links Thank you for taking the time to gather and share useful information. New link Hello everyone. I just want ot let you all know that I have added a new link to our site. , one of our member and myself have been working on that site for over two weeks now. We have tried to gather as much information about Achalasia and place it on one site. I hope you will take a look at the site. I want any imput on the site and if you want to add any information please feel free to e-mail me at mmueller@... or at jwarren@... This is not a site to take away from this group in any way. I want this to be an added resource for this group to use. I hope everyone is doing well. in Suffolk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 This is the 'project' I eluded to in my greeting to the group. I am so proud of for taking on the task of creating this site. She had no prior experience with creating a web site, let alone a single page. has also been a great help with ideas and resources. The site has come a long way since she started and I'm sure its just going to continue to grow with every one's contributions and ideas. Keep up the great work! On 5/30/06, <muellmeris@...> wrote: Hello everyone. I just want ot let you all know that I have added a new link to our site. , one of our member and myself have been working on that site for over two weeks now. We have tried to gather as much information about Achalasia and place it on one site. I hope you will take a look at the site. I want any imput on the site and if you want to add any information please feel free to e-mail me at mmueller@... or at jwarren@... This is not a site to take away from this group in any way. I want this to be an added resource for this group to use. I hope everyone is doing well. in Suffolk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 , Thanks for inquiring, the site address is www.achalasia.us Please let us know of any feedback. Please visit www.achalasia.us Re: New link , could you post the URL of your new site? I looked at the Links page and saw many links, but I can't tell which one you mean. What is it called on the Links page? achalasia/links Thank you for taking the time to gather and share useful information. New link Hello everyone. I just want ot let you all know that I have added a new link to our site. , one of our member and myself have been working on that site for over two weeks now. We have tried to gather as much information about Achalasia and place it on one site. I hope you will take a look at the site. I want any imput on the site and if you want to add any information please feel free to e-mail me at mmueller@... or at jwarren@... This is not a site to take away from this group in any way. I want this to be an added resource for this group to use. I hope everyone is doing well. in Suffolk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Hello. Nice site. The statement about 1 in 100,000 should be clarified. A correct statement would be, "The incidence of achalasia is approximately 1 new case per 100000 people per year." The phrase "new case" in this context is redundant because it is implied by "incidence" so it is often omitted. There are different kinds of rates that are quoted for diseases. Of those, "incidence" and "prevalence" are the two that apply here, and they are often confused. The 1 in 100,000 is an incidence rate, but it is often wrongly presented as a prevalence rate. Incidence has to do with the frequency of new cases. Prevalence has to do with the total number of cases, both new and old. See, Incidence: http://www.cdc.gov/nchs/datawh/nchsdefs/incidence.htm See, Prevalence: http://www.cdc.gov/nchs/datawh/nchsdefs/prevalence.htm For an article that provides both rates for achalasia, see: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=14596655 & dopt=Abstract "It is a rare disease, with an estimated incidence of approximately 1/100,000 and a prevalence close to 10/100,000." I find 10/100,000 very interesting. I would have guessed it would have been more like 20/100,000. It implies that the average case dies at ten years after presenting. My understanding is that achalasia generally does not shorten your life, so I take this to mean that most cases, by far, are in the elderly. I wish we had both rates broken down by age groups. I have seen incidence listed for children, something like 1/1,000,000. (Don't quote me though, the number and the memory are both fuzzy. You may wish to explain all this on your site as it causes a lot of confusion. Many newbies get it wrong and many of the old timers don't remember which is which or even that there is more than one rate. (If they ever knew at all.) notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Hi All - Forgive my cluelessness! According to my page there is one new link, but I can't figure out how to know which link it is. Is there some easy way to locate the newest link? Thanks, Nora Quote Link to comment Share on other sites More sharing options...
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