Insurance Information
September 2002: Just prior to a follow-up consultation with my neurologist, I discovered the HFSA through an Internet search. I rapidly searched the site and read personal histories and most noticeable was the name that kept appearing - Dr. Peter Jannetta. Having just had a Botox injection in August, I knew it may be too soon to pursue surgery though felt it was a blessing that I located the web site just a week prior to my neurological visit. I discussed the web site and Dr. Jannetta’s work with Dr. Alexiou and he felt that if I was ready to consider surgery (which I was) that consulting with him would be worthwhile. I requested the consultation through my primary care physician. “Someone“ (not my primary care or anyone from insurance but whom I will not name) informed me, however, that insurance would not approve this request. Not being one to give up easily, I knew that all insurance could do is say “no” and that it would not hurt to try...so the referral request was initiated. November 2002: I received a letter from Care Choices stating they would authorize consultation with Dr. Jannetta but it also stated that any surgery procedures must be performed by an in plan provider. It included instructions for how to appeal if either the physician or member (myself) disagreed with their advice. I can’t express how happy I was to receive this approval - it was really like a dream come true because I had never tried to go out of our network since subscribing over 9 years ago. I did not file any type of appeal at this time because I was not sure who I’d select as my physician. We gave a lot of consideration to the logistics of a trip - having young children, possible complications, possible need for follow-up care, and the like. At this time I wanted Dr. Jannetta to assess my condition in person and answer some other questions I had, after which I would decide whom to select for my surgeon. In mid-November I composed a lengthy letter to Dr. Jannetta. I explained much of what has been included here and also included my past medical history, past surgical history, current medications and any questions I wanted answered. It was concluded with a thank you and I expressed that even though it was lengthy I felt it important to share everything I could think of because I had been authorized only one visit with him. December 2002: Kathy Evan, Dr. Jannetta’s Clinical Nurse Coordinator, provided answers to all of my questions via email. By now I had scheduled a visit in Pittsburgh for July 2003, arranged so that I could attend the HFSA Conference and have the visit all in one trip. Dr. Jannetta recommends patients be off of Botox for 9 months prior to surgery and my time would be May 2003. I was being very optimistic that I could wait until July for the appointment and have surgery in September after school started (our two children are still in school). Over the holidays I began to notice the spasms were worsening - either that or I noticed them more as the Botox continued to wear off. I decided that I just did not want to endure this condition any longer than I had to and felt it would be best to get the ball rolling a bit faster and move things earlier rather than later. January 2003: Because insurance stated surgery must be done within the plan, it became necessary to me to locate a suitable surgeon within Care Choices in the event that any appeal I might file was denied. Another letter was composed and used for 2 different practices. One went to Dr. Zamorano’s office and I requested data for three physicians in that practice and another went to the office of Dr. Daniel Pieper. Dr. Pieper responded promptly with a phone call - just 4 days after my letter was sent. He offered a lot of information which eliminated my having to ask all of my questions. We discussed the pros and cons of going to Pittsburgh and after some consideration I scheduled a visit with him for February 12, 2003. I also rescheduled my visit with Dr. Jannetta and moved it up to February 26, 2003. February 2003: I spent an entire day in Southfield, meeting with Dr. Pieper and his staff and he showed pictures and answered even more questions. That afternoon I met Dr. Dennis Bojrab, the ENT Surgeon who performs surgery with him. They were very impressive and I especially liked the team approach to surgery. They assured me that students did not have any “hands on” time during the surgery, that they do the procedure from start to finish though students are in the room or watching from monitors. After this visit I was confident that if Care Choices did not approve surgery with Dr. Jannetta that these guys would be a terrific choice. February 2003: On February 26, the big day with Dr. Jannetta and staff. I had heard how efficient the office was but that was nothing compared to being there! The staff is wonderful and so fast that they called my name before I could get out of the bathroom!! We are about 300 miles from Pittsburgh and on the way home we talked about both him and Dr. Pieper. Because of his expertise and years of experience, we felt it worthwhile to at least try obtaining an approval for surgery out of out network. At this visit I asked Dr. Jannetta and staff what they could do to help with insurance. They said that insurance almost always says no initially but they would provide letters and documentation supporting their skills and results if needed. They offered whatever support I would find necessary and throughout the next several weeks, I exchanged many emails with Melissa, Dr. Jannetta’s insurance coordinator. She and Kathy have been fantastic - they kept on top of things with insurance, making calls, providing specific information to my primary care such as surgical codes and letters, and were unconditional in their personal support and encouragement - which helped keep me very calm throughout all of this! I might add that last fall, Dr. Casey also answered an email that I sent, which was very helpful. March 2003: Request for surgery was submitted by my primary care physician with total support that things would work out in my favor. Again, though, “someone” told me that the surgery would be denied because there are physicians in the plan who can do the procedure. Again, I said, “let’s give it a try”. Insurance did indeed deny though in a letter of March 17, they stated that the services covered by this particular HMO must be provided by a participating provided unless it is an emergency. Well, there were physicians and it was not an emergency but this letter also offered instructions for filing a grievance (basically an appeal) and I did. Believe it or not, I was told a third time by “someone” that it would not be approved and this time I responded that insurance did not have an appeal process for anything and it was worth it to me to try. To that I was challenged with the statement that there are doctors in the plan who can do the procedure. I replied that I was aware of this but they did not have the experience of Dr. Jannetta. The letter from insurance also included a formal grievance which I had to complete. It was very short, just 2 pages and there were 4 areas to be answered: Statement of the General Nature of the Grievance, Statement of factual circumstances that prompted the grievance, Summary of the action you have taken to solve the grievance and Statement of the remedy you are seeking. I completed each section and attached documentation such as letters or notes that I felt were important. They included a letter from Dr. Jannetta and his assistant, Rick Kortyna, MD. March 2003: The last week of March, I received a letter acknowledging the Formal Grievance had been received and stated there would be a Member Reconsideration Meeting on April 14 at 4:00p.m. The options offered were for me to participate in person, by telephone, or not at all and stated these options would not affect the meeting or their decision. I could have a representative appointed as well. After much discussion my husband and I decided I would participate by phone. They would allot me 10 minutes to present my case and we felt that since the phone option was available that it was not necessary to drive almost 4 hours round trip for a 10 minute meeting. The letter also stated that additional information I would like considered to be either mailed or faxed. If this appeal was denied the next option was to contact the Michigan Office of Financial and Insurance Services to request an independent external review. We felt that if it was not approved, knowing other options were available, that we would not pursue the matter further. I prepared one last letter. In this letter I did not assume that they had everything previously submitted so I provided my history and statistics I was aware of and stressed my desire to have the surgery done by Dr. Jannetta and why. That letter is about 4 pages in length though if anyone would like to see a copy I would be happy to share that or portions of that with you privately. I included statistics of doctors in the plan I had researched and even one doctor not in our current insurance plan though was trained by Dr. Jannetta. I tried to show that I had covered a variety of angles and was confident in my research. To ensure the letter got to the appropriate person, I sent it certified mail with a receipt coming back to me. April 2003: I remain very calm and relaxed. I had thoroughly done my homework, compiled a notebook of information, exchanged emails with many people and could not think of anything else that I could do. I had a tremendous peace that whatever decision was presented that I could be content with that decision. On Sunday April 13, I phoned the resolution coordinator and left a message to verify she had received everything. She returned my call early Monday, April 14 and assured me she did. I asked if the meeting would be at 4 as scheduled and she said “yes”. We were all set....all I had to do was wait 7 hours and then would have one last chance to present my case. During the waiting, I prepared one last statement to read during my presentation. I really did not have anything new to present and felt it unnecessary to read my lengthy letter over the phone. I prepared a very short statement, which reads: Thank you for allowing me to participate in the Member Reconsideration Committee meeting. I trust that you have all had an opportunity to review my Formal Grievance paperwork, the letter I submitted dated April 2 as well as the letter from Dr. Casey, which Rae. McPeek indicated she received on Friday, April 11. That information best summarizes the nature of my condition, my desire for surgery out of the Care Choices network, and statistics to support my research. Since my letter was sent 2 weeks ago, I have continued to weigh the options of having surgery under someone within the plan versus going out of plan to Dr. Jannetta. It is still my deepest desire to have the most highly skilled surgeon in treating this condition perform my own MVD. After much personal consideration, talking with others in the medical field, and countless emails with members of the Hemifacial Spasm Association support group, I continue to believe there is no better surgeon in treating Hemifacial Spasms than Dr. Jannetta. Surgeons within Care Choices have also expressed the same belief. Besides the information included in the Formal Grievance, personal letter and that of Dr. Casey, I have no new information to offer. I ask that you put yourself in my situation. If you required brain surgery for a fairly rare condition, it is my opinion that you would want the surgeon with the highest level of experience and best chance at recovery. As stated in my letter, I hope to only require one MVD in my lifetime. I remain convinced that my best chance of curing my facial spasms with a minimal risk of surgical complications as well as post-surgical complications (such as a spinal fluid leak, hearing loss, deafness or paralysis) will be if my MVD is performed by Dr. Jannetta. Thank you again for your time in reviewing my grievance. I will try to any questions you may have and look forward to a decision, hopefully an approval, very soon. At approximately 2:35p.m., I received a call from the resolution coordinator saying everyone was together a little earlier than expected and if the time was good for me we would conduct the meeting. It was fine and we were off! After introductions, the coordinator read my statement from the formal grievance and then I read my statement. I did not read it verbatim - rather as I read if some other thought came to mind I interjected that thought. Following the statement, members of the committee asked questions. They were very specific, including “did the Botox ever completely stop your spasms” and they asked specific things about various appointments I had. Thanks to my notebook I was able to refer to letters and dictation they quoted as well as look up anything I could not recall right off the top of my head. Guess you could think of it as an open-book test! I was very confident throughout and for anything that I could not say with absolute 100% certainty, I prefaced that with “it is my understanding”. I did not want this committee to get the impression that I was a know-it-all or that my answers were the only correct ones. Twenty three minutes after the phone rang, I was dismissed from the conversation and informed I would receive a phone call the following day. Another night of waiting was imminent but I knew in my heart I had done everything possible! I was prepared, persevered and had given a lot of prayer and thought into the previous 7 months of research. I said good bye receiving compliments from the committee for having a very good presentation. Note: In letters or during the phone conversation to/with insurance, I never threatened them and recommend that if you attempt to cross this bridge you conduct yourself in a manner that offers information, states your desire and, above all, do not put insurance or any of the physicians on the defensive. Although the human nature of us might say “if you don’t give me the approval then I’m going to (you fill in the blank here)”, this type of approach is not going to get you anywhere. No matter how desperate we may feel - and I’ve certainly been fed up enough with the spasms to tell people I just want my normal face back - insurance does have their rules and regulations and it is extremely important to keep in mind that you are not the only person they are dealing with on any given day. For many people, just like us, if insurance denies, there are other options such as changing plans, even if it means some out of pocket expense is incurred. It is equally important to remember that this condition is not terminal, it usually is not painful, and even though there are things to consider such as emotional stress and being self-conscious, there are many people in the world who are in excruciating pain and would give almost anything to be cured or free of pain. For me personally, the lack of pain was a huge part of enabling me to cope with the time that sometimes seemed to drag on forever. Personally, I wanted to conduct this entire process in a manner that would be a positive example, even if the approval was not given. Maybe this is part of why I had such a peace that I could accept whatever outcome was offered to me. Some of you who are new to the group might be thinking “yeah right...she says she was calm but she’s writing this after the approval was given”. I don’t blame you for being skeptical but I think that several in the HFSA would acknowledge that I actually emailed them in the days before the meeting and shared that I felt very calm about what was to come. Less than 2 hours later, the resolution coordinator telephoned to tell me the committee had reached a decision. She said they reviewed my information and presentation and overturned their decision and were going to allow me to have the surgery with Dr. Jannetta! I was so happy that I shook for about 3 hours after the call. I phoned some friends and emailed even more people. Then I got to work to schedule the surgery! Thank you to everyone who has been there for me every step of the way. You answered questions, put me in touch with physicians, and best of all were there unconditionally no matter whether I needed to talk or complain. I hope in the coming weeks, months, even years ahead that I can be as encouraging and supporting to others as you have all been to me. One surgeon told me that at one time his office had a web site/support group but it became so negative that it was removed. I explained that the HFSA had been the complete opposite and that although there were some negatives as to be expected (such as when someone stated their doctor didn’t know anything about HFS) that overall the entire atmosphere was positive and beneficial to many people around the world. We have continued opportunities ahead to mentor others. Let’s all remember where we have come from and that we may not have gotten as far without the HFSA! I wish I could say with certainty that I’d be spasm free after surgery. It will be my fervent prayer until I am put to sleep that God will guide the hands of Dr. Jannetta and his team and that if it is meant to be that I will awaken spasm free and never have spasms again. My surgery is scheduled for Thursday, May 8, 2003. As soon as I am back home and able to prepare and submit my diary I will do so. I look forward to hearing from you and keep your head high as you pursue your own quest for answers, treatment or surgery.