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Fighting with Insurance Companies for Coverage >>Eve and I have been waging a battle with our medical bureaucracy for over a month now. We have finally convinced them that Alimta is indeed available to Peritoneal Meso patients. Although not here in Canada, there is sufficient legal approval to get it in the States<< Some ways to deal with this: *1. Social Workers or caseworkers: From the LMS list: There has been some recent discussion on social workers as patient advocates. During my wife's treatment path we used the social workers extensively. They ARE a patient's advocate, and can help when things "seem to fall through the cracks". I won't give specific examples, but it got to the point that when my wife was referred to a new facility, one of the first things we would ask is to contact the social worker to see us. We would introduce ourselves, explain our situation, and tell them we would call them when needed. And they always seemed to come through when we needed them. It was not an additional cost to us to use the social workers in the various facilities. They WANT to help. I would recommend contacting them and asking what they can do for you. I hope this helps. *2. Patient Advocate Foundation. From the ACC List AND the LMS list You need to have your ammunition in place, but the Patient Advocacy Foundation at http://www.patientadvocate.org/ and 800-532-5274 has "scripts" on the manner you deal with your insurance company to get them to approve it. It is a useful resource. http://www.patientadvocate.org/ Guides in PDF for Patients - including Managed Care Answer Guide and Your Guide to the Appeals Process http://www.patientadvocate.org/patient.htm Board Members - Physicians, Attorneys, Advocates http://www.patientadvocate.org/board.htm Nancy Davenport-Ennis http://www.patientadvocate.org/bio/nancy.htm *3. General Approach from the ACC list: My wife is a rare cancer survivor. I work closely with patients and physicians that treat this disease and unfortunately I have had to battle each of the majors for my wife 's treatment Prudential, Aetna (you bet ya), and Cigna. I am a scientist and have managed in business for many years. I am not a physician. The opinions I express below are based on my personal experience in fighting insurance carriers to keep my wife alive based on my scientific research on the cancer and in supporting patients in finding treatment and support of advocacy for many patients suffering from other cancers. I agree with Lisa in that you need to put it on them first yourself BUT get really prepared and BE SURE this is the only treatment that holds reasonable promise before you start on this path. Once that is determined then RAISE THE STAKES TO THE HIGHEST LEVEL. Your life depends on it. Some points based on my past experiences. 1. Have at least (2) Doctor's letters advise that this is the only treatment that might save your life. 2. Get the stats on your cancer and mets and lay that out on paper 3. Put the specifics of your case on one page. 4. You will have a Aetna Oncology Nurse - get their name and the name of the Medical Director for the area that serves you. 5. Get your employer benefits director involved if you are employed. (If you have a large employer that is really good because the insurance carriers listen - remember they don't give a damn about anyone. It is all about money to them.) So that is where and what they understand. This is a war for your life. You have to make the price of their denial intolerable for them!!!!!!!!! I cannot stress this enough. 6. Try to find out if the denial was done by a nurse (which I bet it was). If so you may have them for practicing medicine without a license as a physician. Keep that in mind. 7. Pull the latest data on the treatment you want. I know it says that it is less invasive, and that it can be essentially a very short stay in the hospital for the procedure. Get the facts and make sure you know what the procedure will cost versus any other possibilities if there are any. 8. Pull all that together and make these points: a. Only way to save your life b. Rare cancers/NCI suggests clinical trials etc. c. You have documented your physician's recommendations that this is the procedure that should be done. d. It is very cost effective. 9. Right before you send it get with your local State representative in your State and your Congressman. CC them on the letter. 10. I do not know what State you are in but suggest you call the Attorney General's Office AS WELL AS the State Insurance Board for assistance. (Let them help you fight if they will - in Texas they are banging the hell out of the insurance folks and they listen because they have been repeatedly fined)! They should be copied in on the letter also. 11. My information is that FDA has only approved TheraSpheres on the basis of a "Humanitarian Devise Use" in the US for Hepatocellular Carcinoma (HCC). Now consider a site appeal, that is liver site. The TheraSphere Docket and exception is FDA # H980006. It was provided to MDS Nordion, Inc. maker of the TheraSphere, Ontario Canada. 12. *** Make it a national issue after that and petition Nordion and the Canadian government to allow the procedure to be done in Canada and get your Congressman and Senator involved. CC them on every correspondence. 13. Bottom line, wake their butts up that you are in danger of losing your life if you cannot get this treatment and they will be responsible for that outcome. 14. Document everything and I mean everything related to your case. 15. If you send them a letter keep it somehow on 1 page and send by certified mail with appropriate copies to above: benefits; state rep, state senator, US Congressman, US Senators, State Attorney General, State Insurance Board, Doctors who you have a letter from. (Attach their letters). I have yet had this general methodology fail. Go to the top right away, don't screw around with the worms answering the phone. *4. Insurance company websites: Here are some consumer oriented websites: Health Insurance Consumer Guides http://www.healthinsuranceinfo.net/ US Dept of Labor - Health and Benefits http://www.dol.gov/dol/topic/health-plans/index.htm A Consumer Guide to Handling Disputes with Your Private or Employer Health Plan http://www.kff.org/consumerguide/ Patient Advocate Foundation - Under "Resources" has a "Managed Care Resource Guide" to help answer questions in selecting an insurance plan. http://www.patientadvocate.org last updated February 2003 doctordee

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