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Open Letter to Insurers Concerning Mesh Injuries

Dollar sign Scott Steiner, WikiCommons
Dollar sign Scott Steiner, WikiCommons

Dollar sign Scott Steiner, WikiCommons

Mesh News Desk, May 23, 2016 ~ Often readers of Mesh News Desk find themselves fighting with the very insurance companies that led them to a mesh implant doctor. Now they want the device removed and they receive resistance.  Not only because there are very few doctors well versed in mesh-removal surgery but even if they find someone, their insurance will not cover it!

You do not want an amatuer trying to remove mesh impacted int the body.  Very few doctors actually have the experience to even be able to assess these complications to determine if the mesh needs to be removed. If so, it’s a sensitive and delicate operation that should not be undertaken by anyone but an experienced mesh removal doctor.

As there is more and more awakening to mesh dangers and complications, insurers too need to be brought up to speed.   The following letter is one a woman can use to address her insurance company when it fails to recognize the seriousness of her complication and refuses to support her decision to seek out one of the few mesh removal experts in the U.S.

Here is a suggested Open Letter to insurers to help them gain some understanding of this mesh mess.

To Whom It May Concern-

I’m writing as a mesh-injured woman who is desperately trying to seek help from a doctor experienced in mesh-related injuries. This might include a urologist or urogynecologist who has experience in removing pelvic mesh that has migrated, eroded, broken apart, perforated organs, folded, frayed and perforated nerves, not to mention the systemic issues such as autoimmune disease that often erupts after being implanted with polypropylene pelvic mesh. 

There are very few competent medical doctors around the country who are dealing with the hundreds of thousands of women who are now experiencing the complications from this mesh. Through the mesh-injured community, we are becoming aware of these doctors.

I am seeking a referral to a doctor who has experience in removing polypropylene mesh from the pelvic region, not just the closest and most cost-effective for the insurance company. This may be a matter of life or death – mine.

As you know this mesh was implanted in me and thousands of others to hold up pelvic organs that may be falling through the vagina. Like thousands of others, it has only caused problems that can be described as life-altering. As I write this, the mesh is migrating toward my bowel, a condition that can lead to fatal sepsis (this is one example, use your own).

There are currently at least 120,000 lawsuits filed against mesh manufacturers for marketing a defective product without any FDA clearance for safety and efficacy. These are not lawsuits generated by hysterical women. The injuries are real and not imagined. In many cases they are permanent.

Juries across the country have determined that pelvic mesh was defectively designed, yet many meshes remain on the market. Some doctors still mistakenly refer to them as the “Gold Standard.”  Clearly marketing and medicine have married to create this huge disconnect.  No Gold Standard would wound so many.  Remember it was frequently the insurance companies that led women to doctors who implanted these products.  Doctors have admitted on the stand they were unaware of the dangers and had been made false promises by sales reps from the major mesh makers.

All of the problematic mesh, whether for prolapse (POP) or incontinence (SUI) is made from polypropylene and they are all substantially similar. They were all approved by the Food and Drug Administration as substantially equivalent to a “predicate device,” the ProteGen, which was eventually taken off the market for being defective.

I should not be in this position. I should never have had mesh implanted for a condition, not a disease. I should have received true informed consent. I did not. There are safer alternatives that have been known for decades, before mesh manufacturers began coaching doctors on this new “minimally-invasive” technique that would yield them greater profits in the shortest amount of time.

Insurance companies supported this procedure we now know was experimental and never underwent clinical trials for safety. I should never have to beg for my insurer to send me to the proper professional who very well may save my life.

But that is where I find myself.

A friend recently made signs and, along with supporters, petitioned in front of the insurers’ hospital to receive a referral to UCLA’s urology department, considered the most experienced in the world for mesh removals. Within about 20 minutes, she received that referral.  Is that what it takes?

I remain adamant that I receive a referral to the specialist of my choice based on the recommendations of others who have had successful mesh removals.  Together we can work on determine the best doctor to address my problems, as soon as is reasonably possible. 

I encourage the insurance company to gain a better understanding of the breadth of the problem because women are requiring multiple surgeries when the first doctor, the one closest to the patient who is the most cost-effective, may leave remnants of polypropylene behind to wreak havoc, migrate, shrink and continue to incite a foreign body response. That creates a “ticking time bomb” as the long-term effects have never been studied in clinical trials. We are essentially the lab rats.  

As is typical, one partial removal leads to another and then another adding unnecessary cost  to the insurer and a burden to my quality of life.  Isn’t it preferable to get the best surgical outcome in as few surgeries as possible?   

Since insurers initially paid for these mesh implants, it is now time to step up and do the right thing- cover explant surgeries by reliable, experienced surgeons. 

Please advise me on the next step needed. I look forward to talking further with your representatives who have direct authority over my case and have the authority to issue a referral. Time is of the essence here.

To deny them the proper medical care adds insult to these horrendous injuries.

Sincerely,

(your name here)

I am supplying you with stories that will back up my assertions here. Please read them and become knowledgeable about this issue.

Learn More Here:

 

Dr. Veronikis on Mesh injuries

http://meshmedicaldevicenewsdesk.com/removing-mesh-and-getting-healthy/mnd-interviews-dr-veronikis-mesh-injuries-explants/

 

Doctors Speak out on Mesh Injuries

http://meshmedicaldevicenewsdesk.com/featured-articles/get-the-mesh-out-doctors-react-to-patients-following-fda%E2%80%99s-july-warning-about-surgical-mesh/ 

26 Comments

  1. kristine says:

    Jane your Awesome. I once again found myself crying. Thank you.

  2. Wendy says:

    I couldn’t breath as I read your letter, the hurt that mesh has brought to my life is so unbearable most days. I felt like this is me after reading it, we are just as important as anyone. We just want to get back our quality of “a” life. Because right now I just want to stop the pain, the crying, the financial worry of the future. Thank you Jane

  3. Therese Weber says:

    I have had trouble with my mesh and had it removed with serious complications. Now that I am better I wanted to investigate my legal options only to be told that the”statute limitations” had run out. Many states including Oregon and Alaska (implanted and removed in Alaska) have a two year limit. I was too ill at that time to even consider looking into my legal options. Now, I’m being told “no exceptions”. I still see many doctor’s and have physical therapy often. This may not have been the correct forum for this email. I am at a loss and don’t know where to turn for information. If this is not the correct venue for this, my apology. At least I got to vent a bit of my frustration. For that, thank you.

    • msm says:

      That is horrible! My state has 3 yr. Statute of limitations, but it doesn’t start until the injury and/or cause of the injury is confirmed. My definitive diagnosis was not until 2013. Mainly becsuse I was continually told it was all in my head and believed it until was unbearsble and had no quality of life. Not all attorneys know this (which is a sad commentary on competence of some in the legal profession). Make sure it is true. Find the statute and read it yourself. You have probably already done all of that. I am genuinely angry that you are first injured medically and now legally!

      • Therese Weber says:

        Thank you, msm, for the kind words, this mesh ordeal has taken over my life. The list of complications is long and very painful. I have looked for an attorney to represent me, but they have said “go the big firms” Big firm told me to late. That was it, too late. No explanation of any kind. And, if by chance there is a “Global Settlement” I MAY be entitled to a portion. I have never seen such disregard and dismissive attitudes.

  4. HE says:

    I am thankful for this letter. I have wanted to write some nasty letters to my insurance company – many times. I received a letter from them before my first removal surgery stating: “You have a reason to obtain the help of an attorney. If you become involved in litigation, you are required to give us all of the information.” They sent a form with this letter for me to fill out. That is the first time I even knew that litigation was a consideration. I didn’t even have my first removal yet. I was very hopeful this was all it would take. I became very angry thinking – they knew this could happen and allowed it anyway. What is wrong with them? They must have a stack ready to send out to the next victim that they approve. I think they also should be denied reimbursement, because this isn’t a Dr. malpractice issue, this is an industry wide deception issue. That the very mesh put into me is still being put into others every day is horrific. When is someone in the cog going to wake up and recognize that lives are being destroyed, mutilated, and the fallout is overwhelming? The whole family suffers from the “minimally invasive” product that is anything but “minimally invasive”. I am angry at the whole system. That common sense is no longer used. That respect and decency have been replaced by denial and CYA. We need many, many specialists who understand these complications to help us and they are no where to be found. The Dr.’s are writing their books on us! Dr. Raz is good, but he is handling a giant patient load. This doesn’t help anyone who can’t get there. I cannot find one Dr. in my area that understands that mesh is dangerous, they are all using it! I find this so totally unacceptable. ACOG and the AUA have made statements on how to handle the mesh issues. We who have lived the nightmare have much different answers than the so called “experts”. I am tired of trying to self-diagnose, because of lies told to me by Dr.’s. I have a support network of women who know more than most of the Dr.’s. I have no idea of why no one seems to want to hear the truth, except those of us who are suffering. Except for money, that seems to be the bottom line. I agree that the two year statue of limitations should not apply to a permanently implanted product, because we have no idea when the bomb will go off. It should be considered under the murder statute. No limitations. We have all been injured differently and that might be part of the problem. I don’t know what it will take, but something BIG has to change.

    • Disgusted says:

      I received the very same letter from my insurance company. I feel your outrage!! I and the doctors who are trying to help me have to fight for coverage for procedures to help me. Some of them have been to save my life!! It is truly amazing to me that mesh was allowed with no proven record, and they are resisting procedures that help. I am some better after the latest and the doctor worked late arguing with them to proceed. This whole thing is a nightmare that I cannot wake up from. Every time I learn something new about this issue, I am flabbergasted. There are no words to describe the depravity of it all. My heart goes out to all of us who are suffering in the name of greed and deception.

    • Bejah says:

      Dear HE: Simply put, they do not care. They care only about profit. We as a people, as a nation, need to get political and push for a lot of things like campaign finance reform, the scourge that is super paks, ect. and breaking apart supercorporations that conduct their “business” in a way that does not bode for a healthy future for our nation. I do not want to buy something made in China where the labor cost is low and much that is produced is poor quality and have it be then brought back to us where it is sold for a significant profit. How dare these corporations do this to us. Please try to only buy American. When I call DISH about my bill I get a person in the Phillipines, I did this just the other day. I said I wanted to talk to someone in America so the person transferred me to a manager in Ohio and the conversation was meaningful and had a good result. Push back. Do not accept this.

      I do not wish to be critical but I must be with my mesh victim family…we complain and we wail, I as much as any, thinking this is not how the world is supposed to be…but how many of you are going to vote, exercize your political right and will???? If you do not vote you are hypocrites. I went through a period after I had to short sale my house post 2008 du to mortgage fraud…I did not vote for more than three years I was so angry but all I did was hurt our cause, It was very selfish of me. Please vote. It may seem a small thing, a futile effort given the stats of recent years, but if we want to take our country back, if we want to control the expansionist tendencies of the big bad corporations we need to change those numbers from 7% to 79%. We do need to take back America, it is our country so that what has happened to us never happens to our children. God Bless Our America. Bejah

  5. cruci says:

    I wonder will something like this work with people who have medicaid? If so can somebody send a letter format or how to start the letter, please?

  6. Suzanne McClain says:

    I actually wrote a letter to my insurance company back in 2008 when I became injured, asking that they stop covering Transvaginal Mesh surgery, and I sent it twice via certified mail. I got absolutely no response from them. I am hoping that this letter will not fall on deaf ears, since there is now documentation to back up the fact that tens of thousands of women have been injured.

    Thank you Jane for writing this!

    Suzanne

    • Jane Akre says:

      You have to hope that someone saw it. Please send this letter to your insurers. They will see it….. if they get enough letters, perhaps they will even do something. You have to wonder how “human” humanity has become.

    • Bejah says:

      Suzanne, Your efforts are admirable to say the least. Sadly, as I am sure you know, they will not respond in any meaningful way BUT that does not mean there was not some impact, some effect, some conversation generated. Thank you for doing what you did.

      Bejah

    • Bejah says:

      Your letter may have been destroyed by certain administrators who were advised to do so.

      Bejah

  7. Pamela Silva says:

    Well, along these very lines. It took me years to finally find a Urogynecology had signed up with my plan, the only one I could afford, and the only ones in the network. Guess what happened? They cancelled my appointment …twice! I have got a raging UTI at the least, I know. The pain goes up into my left abdomen. And, even though I did see a gynecologist, all he would tell me was, I had a rectocele, that I had when the mesh was placed for pelvic floor prolapse. My surgeon knew it, it is in my operative reports. Why he did not repair it, I have no idea. Anyway, when they called the second time, I told them what was wrong and I said, my life is very affected and I am very sick with this. You cannot keep doing this to schedule a surgery. They had tried to tell me it was emergency but you don’t schedule those. I don’t know what to do. Can anyone recommend doctors that are sort of on our side, so to speak, in the Dallas, Fort Worth area, or even in Texas??? I would really appreciate some help.

  8. Karen says:

    Thank you jane

    Funny that this is happening because the BANKS IN AMERICA OWNS THE INSURANCE COMPANIES HANDS DOWN !!! THEY OWN ALL THE INSURANCE COMPANIES! EVERY STINKING LAST ONE OF THEM !!!!

  9. Bejah says:

    Hello people, I am writing a brief note just to report on the matter of pain medication…an update from Southern California: People here are having their pain medication cut, in one case the cut was described at a 30 pill cut, this for a woman who had fallen backward and damaged her spine in the Lumbar-Sacral region and in breaking her fall with her arm, lost much feeling in that wrist and hand which is often numb. She can no longer work and because she qualifies only for Medicaid even though she worked most of her life in an administrative role for the county of San Bernadino, and I do not know why she is not eligible for Medicare. It may have to do with her son who suffered a severe exposure to lead based paint as a toddler and has severe neurological injuries as a result. It makes my blood run cold to see her have to suffer even more. She said she will need to rely more on marijuana and may start drinking to try to ease the pain. My pain mgt. physician is refusing to comply with the order which as I recall is Federal. Remember states rights! We talked about moving to Oregon where at least we can excuse ourselves from life if it comes to that. For those of us with chilren at home it becomes more complicated.

    For myself, I feel weaker than I was a year ago, and I am so exhausted all of the time and sleep a lot and I do not know what is causing that. My loss of appetite is more of a problem and the peripheral neuropathy in my legs is worse, and extending increasingly into not only my pelvis but even now my upper abdomen which is terrifying. I hardly have the strength to read through the site any longer but I want to try. I need to strengthen my immune system more. I have come across several things I want to share with you all but I then lose track of where they are. I feel I am losing ground. Happy for the good news, and still praying for a major breakthrough for us all.

    I had a thought the other day that I should write a letter to the surgeon at UCLA who implanted me imploring her to help me. I wonder if any of you have done that and what the result was. Take care, Bejah

    • Still Standing says:

      Bejah, Im so sorry you are not doing well. Ive missed hearing from you. It is a terrible thing that is happening among those with chronic pain. Im working on an update article for this site that will give you more information about what is happening legislatively. There is not a federal mandate in place yet, but the funding bill is moving through the house committees. There are also guidelines for those agencies that want to supply alternative methods ( instead of opioids)for chronic pain sufferers. Some of the requirements placed on physicians are chilling. Stay tuned for this update.

      Now, for you. What do you think has made you worse now? You indicate that the pain has spread to your upper abdomen. I worry that you have developed myofacial pain as well. Please try to move around more and do some gentle stretching , even in your bed. Ive preached about this before, but it is so important. As you brace you pelvic muscles against the pain, you bend in as a protective response. However, with chronic pain, constantly bracing shortens your pelvic/abdominal muscles, then you brace more, and they continue to get shorter and generate more pain. Do what you can to address this. You dont need to do a workout,but you do need to stretch those muscles out. Hypertonic pelvic floor impacts how your bladder and rectum function. It can also impact how your pain signals are sent. It just starts a cascade of problems and each one that triggers pain needs to be addressed individually. Gentle abdominal massage can work wonders . Start on right side with just the tips of your fingers, work in a circular motion right to left several times a day. It helps reduce pain from tight muscles and adhesions. A plus is that it helps move the bowels along better. Are you taking anything for depression? Sleeping a lot during the day can certainly be a manifestation of depression. New research points to Vitamin D defficienty as a contributor to depression. Are you taking an adequate amount of vitamin d supplements. Even if you spend time outside, you can be deficient. If you are spending most days inside, you really need to supplement.

      Please take care of yourself and try to address some of your needs. I care.

      • Bejah says:

        Hi SS, So nice to hear from you. IMHO the Federal Government should have had viable substitutes available for people before cutting medication for people with genuine need who have done everything they have been asked to do which in itself presents hardships for them. I respectfully disagree with the way this is being handled. Take care and thanks for warm greeting.

        Bejah

        • Still Standing says:

          No kidding, Bejah. you give the government way too much credit to think they would have something in place BEFORE. They can only react..no ability to pre plan. Now they are overreacting and overreaching and people with chronic pain are going to be the collateral damage. My article about this will be up sometime this week I imagine. what did you do for self care today???

  10. Dg says:

    This all too familiar to me. I traveled out of state to see Dr Raz because the doctor in my state said mesh was not causing me problems and told me to see a rheumatologist .I sent several letters to my insurance to try to at least get them to pay out of network.They refused.I was actually in LA my surgery was scheduled for the next day .I had to come up with money to pay for my surgery out of pocket within 24 hrs. I did not habe a choice I waited 6 months for my initial consult then another 5 months for the removal I was getting sicker each day.unfortunately the insurance companies want to keep everything in network regardless of who’s life is at stake.I now know if I would not have had the surgery performed by Dr raz I would not be here today I had a septic infection the mesh migrated to the center of my bladder became hard and the surrounding tissue was infected. Not even an mri could see this or cystoscope, but Dr raz knew I was in pain and very sick and agreed to do exploritory surgery which saved my life.Yes I still have a big bill to pay because the insurance refused but it saved my life. The hospital does give significant discounts for self pay however it has to be paid up front.

  11. Bejah says:

    My Go DG, another horrific story. This has got to stop. So glad you survived and you are still here.

    I had heard it said that insurance companies are happy to have you go to the best place for a surgery because they feel in the long run it will save them money and I believe that to be the case. I do not know what insurance company you are with or if you have a PPO but that may make the difference. You might want to change insurers, report this to your employer and finally sue the insurance company that deserted you. Many consults with lawyers are comp. There are actually a lot of things you can do. First get your file from the medical center and from the doctor since they are separate agents and there may be different information in their personal notes. If you qualify you could go to legal aid. I would also go back to the hospital and ask for a meeting with the patient ombudsman. Then I would get a copy of my insurance policy and then take all that to a lawyer. Also research your insurer for examples of similar behavior. I would check with the medical board about complaints, and the court for any cases filed or settle with that insurance company. Many county court houses also have attorneys you can make an appt. to consult at no charge but who knows how competent they are (You can check them out as well to some degree at state bar. So if you are not exhausted after all that you will be! Take care, and thank God you are alive.

    Blessings,

    Bejah

  12. Dg says:

    Beja, thank you so much for the information.I will defiantly look into that .My surgery was 2 yrs ago at the time I had Humana I believe it was a ppo.I sent letters to the board to try to get them to make an exception but they denied me. I understand they want to keep everything in net work to help off set the cost but when no provider in your state knows how to handle the complications the patient really has no choice.I had several letters from physicians recommending surgery by Dr Raz,I also submitted all copies of my records to prove my case .I truly felt neglected by the system.I know there are other women experiencING this and unfortunately they end up seeing a local doc who has no experience with mesh removal so they end up worse off the. Where they began.So sad.I will continue to pray for relief for all the pain and suffering mesh injured women. Have to endure.God bless you all!!!

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