Excision surgery for Endometriosis to be recognized as medically necessary by Insurance.
This petition had 5,325 supporters
Please keep in mind the below letter along with 200 pages of medical history was sent to the appeals dept. I'm currently to the third appeal. As of late my file was sent twice for external review to doctors who qualifications are not in endo care. The appeals senior director at BCBS reported to the gentleman handling the case at PEBA, that she did not see it "medically necessary"! This isn't just about my surgery! its about 175 million women! 1 in 10 have Endo! Also, think about it this way...WHAT IF it was you daughter, sister, wife, mother or best friend! WHAT IF we put the word "cancer" in their? Would you think of it in a different light?
I am writing to appeal the decision to not cover any of the expenses to Dr. Sinvero. All services from The Center of Endometriosis Care should be covered as in-network as there are no in-network providers who provide this service.
In this appeal I will lay out my medical history and the research that I did that lead me to the decision to travel out of state to have this procedure, since nobody in-network or in the state of South Carolina provides this valuable and medically necessary service. This was not a decision that I made lightly, as travelling out of state to have a major surgery was a considerable endeavor.
However, after the years of pain and suffering I experienced and the research that I conducted it seemed the only logical choice to finally be resolved with the endometriosis pain that I have experienced for twenty years. Because of the dismissal of endometriosis (or "endo") as "women troubles" historically, the disease has become a nightmare of misinformation, taboos and problematic hit and miss treatments that fail to take into consideration the multi-faceted, stubborn nature of the disease.
Now for a little background history on my journey! I can still remember the day I got my period. My family was going to the beach for vacation. We had to stop each hour for me to change the sanitary napkin due to the amount of blood. Being a young girl we are told over and over “its normal” let me assure you nothing about what I’ve experienced is normal. Flash-forward a few years, my periods during my teenage years were extremely painful. I experienced blood clots, debilitating pain and 6+ days of a menstrual cycle. This never went away, but lets move on to my 20s. The Doctor recommended that putting me on birth control would make the Endometriosis better. It did not. The next suggestion by Dr. Gower was to have laparoscopic surgery. This only provided a short amount of relief. I would continue to have five more surgeries. Dr. Gower who is an “in network doctor” and per the Greenville Hospital website bio an expert in endometriosis care; that info from his bio has since been removed! I take great pride in that the information, which was misleading, has been removed. I stopped being a silent patient! I have made it my mission to make it very public how we are miss lead by doctors and how we must fight for coverage from insurance!
Lets move ahead to my late 20s. At this point I’ve now been told that having kids will make it go away. Again, not at all true. I’m then told removing my tubes and doing an ablation will get rid of the endometriosis. This last surgery I had with your in network provider proved to be the worst of all. I had surgery on Christmas eve of 2014. The first thing that should have made me turn around and leave was the fact the bathroom in the hospital room I was in was nasty! Unclean, would be me being nice. Then the nurse that runs the IVs came in and broke the needle off in my arm. I get to the operating room and after the procedure I learn
from the doctor himself the machine he preferred was broken. Being Christmas Eve I’m rushed to hurry up and get out and go home. I guess that my presence was an inconvenience to the GHS staff. I was so loopy my husband didn’t feel good about taking me home. That concerned was ignored.
Lets fast-forward a week or so. I return to the in network doctor in more pain. I’m told I have an infection in my uterus. I’m also told not to worry about it. Makes since that the doctor wouldn’t want to find concern in this infection since he sits of the board at GHS for infection concerns. I’ve endured costly procedure after procedure, year after year laparoscopic endometriosis ablative/cauterization surgery. The only thing this surgery did was just make my uterus mad! At this point I went back to this doctor complaining of the same pain. I was told by your in network doctor that their was nothing more he could do for me.
So being defeated I resigned to a life of pain. I think it’s important to understand what that means. We are not talking about pain in the since that most people think of pain. When you have a chronic illness the pain is a pain that changes you as a person. As of about a month ago Blue Cross sent me a letter offering drugs since I have a chronic illness! They received the letter back with my appeal! Drugs do NOT cure ENDOMETROSIS!
My daily life had been reduced to “making it through” each day; some days better than others. It’s just a constant battle. Me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do. On those so-called good days. Not without pain but you are able to get something done that day. You try and hurry and get anything you need or want to do done because you know that what is to come is a unbearable few days of pain that you have to pay for having one half productive day. Its always a part of your life regardless of how you’re feeling. Even on your best day, it’s just lurking in the shadows, ready to strike at any moment.
Imagine having the flu. The way your whole body aches is something endometriosis patients live with and if that not fun enough you get to endure the tireless nights. Night becomes your enemy. Your all alone in the silent night tired but unable to sleep. Then there is the simple thought of using the restroom. When you have been reduced to having to use a special potty stool because you have so much endometriosis growth you either have diarrhea or constipation.
When I found Nancy’s Nook and began to do more and more research I found how miss educated most doctors are in endometriosis. Let alone insurance companies.
I initially looked for an endometriosis specialist in South Carolina, but was disappointed to learn that there are none. So I realized I would have to educate myself and perhaps travel if necessary to get the proper care.
In my research, however, I kept coming across “excision” surgery as the gold standard of care for endometriosis.
Endometriosis.org defines excision: Excision removes endometrial implants by cutting them away from the surrounding tissue with scissors, a very fine heat gun or a laser beam.
The technique does not damage the implants, so the gynecologist is able to send a biopsy of the excised tissue to the pathologist to confirm that it is endometriosis and not cancer or another condition.
Excision allows the gynecologist to separate the implants from the surrounding tissue, thus ensuring that the entire implant is removed and no endometrial tissue is left .
This is contrasted with the cauterization/coagulation/vaporization method that is commonly used by lesser-skilled doctors. Keep in mind; cauterization is what my gynecologist used on the endometriosis during all of my previous surgeries. This already proved to have a limited effect for my endometriosis, as I already needed another surgery.
Endometriosis.org defines cauterization/coagulation/vaporization as: Coagulation destroys implants by burning them with a fine heat gun or vaporising them with a laser beam.
When coagulating implants, care must be taken to ensure that the entire implant is destroyed, so it cannot regrow. Care must also be taken to ensure that only the implant is destroyed, and no underlying tissue, such as the bowel, bladder or ureter, is damaged. The possibility of accidentally damaging the underlying tissue means that most gynecologists are wary of using coagulation on implants that lie over vital organs, such as the bowel and large blood vessels .
Endometriosis.org renders their recommendation: Of the two techniques, excision is more effective, requires more skill, and is more time consuming.
The skill and time required means that is not used by all gynecologists. If your gynecologist does not have the skill to excise all your endometriotic implants, ask to be referred to a gynecologist who specializes in endometriosis surgery and is skilled in excision.
The effectiveness of excising endometriotic implants has been shown in two clinical trials. Women who had their implants excised had fewer symptoms 12 months and 18 months after surgery compared with women who underwent a laparoscopy without excision of their implants .
This recommendation is corroborated by many sources. In The Journal of Family Practice’s publication The Female Patient, Todd R. Jenkins, MD puts endometriosis into context by looking at the costs involved with the multiple treatments most patients undergo within their lifetime with the disease:
The cost of hospital treatment for endometriosis in the United States has risen 2.7 times faster than that of overall medical care costs; in 2002, inpatient costs were approximately $1.1 billion .
Jenkins continues by sharing the findings of studies along with his conclusions: Excision of endometriosis was first described in 1991 in a 5-year follow-up of more than 350 women. In this cohort, fewer than 20% of women experienced
subsequent recurrent symptoms or disease.
A 2003 study involving 39 subjects with histologically confirmed endometriosis randomized patients to either immediate excisional surgery or diagnostic surgery only. All patients underwent second-look laparoscopy, with 80% of women in the excision group reporting improvements in pain symptoms versus 32% in the control group.
Women with more advanced disease experienced a greater response to laparoscopic excision. Furthermore, responses on quality-of-life instruments showed significant improvements in both mental and physical scores.
A 1996 investigation reported on a 2-year follow-up of women undergoing excision versus laser vaporization. At 12 months, 96% of excision patients and 69% of vaporization patients were pain-free, falling to 69% and 23%, respectively, at 24 months. Findings from a study of 135 patients with a mean follow-up of 3.2 years revealed reductions in pain scores related to dysmenorrhea, nonmenstrual pelvic pain, dyspareunia, and dyschezia. As expressed by survival curves, the likelihood of avoiding further surgery over the subsequent 5 years was 64%,
Based on the studies performed to date, it is the author’s opinion that laparoscopic excision of endometriosis, when technically feasible, should be the standard of care .
Further, a data review on the “effectiveness of laparoscopic excision of endometriosis” concludes:
Laparoscopic excision is currently the 'gold standard' approach for the management of endometriosis, and results may be improved with careful use of appropriate techniques and suitable adjuvant therapies .
The decision to pursue endometriosis excision surgery seemed clear after researching the data. The results are superior to other modalities and the potential for having to have yet another future surgery would be lessened if I could get the surgery from an excision expert. Ken Sinervo, MD. And the Center for Endometriosis Care
Once it was clear which procedure to undertake, I began to research who would be the most qualified to conduct the surgery. Unfortunately, because this surgery is so specialized, there are no excision specialists in the state of South Carolina. Therefore, I had to look out of state and out of network.
I researched several excision specialists around the country. I came upon the Center for Endometriosis Care (CEC) and was impressed with their experience and success rate. In the past 25 years they have conducted procedures for over 5,000 patients . Further, based on their follow-up surveys since 1991, 85% of the patients surveyed had no recurrence .
I further sought input from past patients of the CEC, all of whom shared their successful recovery from this debilitating and recurring disease. The choice seemed clear that Dr. Sinervo at the CEC was the best person to get the job done correctly once and for all.
My care was excellent and the pain I experienced prior to surgery is now gone. During surgery Dr. Sinervo thoroughly inspected my entire abdomen for endometriosis and found it in several locations.
I do not believe most surgeons would have this level of expertise. However, because Dr. Sinervo deals with difficult to treat cases from around the country he is one of the few skilled doctors I would trust to perform this surgery.
I have dealt with chronic pelvic pain for twenty years and have tried many treatments. After many failed surgeries and the lack of success to bring relief from pain from endometriosis, it seemed only logical to get excision surgery from a skilled doctor with a good track record. Excision surgery is the gold-standard of care for difficult endometriosis cases according to many top medical journals and studies. Because there is not skilled excision surgeons’ in-network I petition you to please cover my services with Dr. Ken Sinervo at the Center for Endometriosis Care. They are a reputable facility with highly skilled doctors, of which Dr. Sinervo is one.
Dr. Sinvero is 1 of 100 surgeons who are skilled in excision in the entire world. When did it become the right of an insurance company to deem what is medically necessary for a person based on only wanting that person to be seen by the doctors that are in-network. Not based on medical facts but rather the cost of doing business. That is where Blue Cross has decided to play God. If you think your tired of hearing my story about my invisible illness think of how tired I am fighting for treatment, fighting for understanding, fighting for a cure, fighting to live again! I fight for my health in ways that most people will never understand.
As if Endometriosis is enough to deal with the disease also has brought about other problems that have to be addressed, one being Adenomyosis. The other is Pelvic Floor Dysfunction, this being caused from the years of pain. Due to having to use in network providers what resulted was more damage to my body and yet more expenses. As I’m providing all of this information to you my insurance company, I’m also providing a copy publicly along with the ones you see cc. below. You will see from the records from Exhibit A, B & C that the services from the Center of Endometriosis Care should be covered as in-network.
I would also like to grant you permission to request any medical records necessary from Dr. Sinervo’s office you may need in reviewing this claim.
• Standard medical treatments by general gynecologists have failed to relieve the symptoms caused by my endometriosis.
• The standard surgical procedure (laparoscopic ablation) provided only
Temporary relief of my symptoms. Repeated ablation surgeries will prove costly and place me at additional risk given my history of my VSD.
• Laparoscopic excision, performed by an experienced skilled surgeon, has been proven to be more effective than ablation, especially in moderate to sever cases including those involving the bowel and other organs
• There are not currently any providers in South Carolina and most cost-effective treatment for my disease is not available in-network. I have chosen this particular center because their experience and skills offer the best chance for long-term relief and successful treatment
Thank you for reviewing my files. I’m 1 in 10 who have this disease! As I stated previously I will NOT stand silent on the lack of care. This letter is also being made public. It is my hope that PEBA can show the 176 million worldwide and the 5 million in the United States that they are taking women’s health more serious and I can share publicly that we have a resolution to this matter.
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