Celebrating 35 Years

Letters Needed for New Code for Mass Removal of NF Tumors

We have an URGENT request of anyone who is affected by multiple tumors from neurofibromatosis or has a loved one who is. Some of you may have heard of an “electrodessication” procedure that is performed by Dr. Weinberg in New York and a few plastic surgeons in the US. This procedure is different from electrodessication that may be done by your local plastic surgeon or dermatologist and there have been problems distinguishing the difference and getting insurance coverage.

To correct this problem we are attempting to get a new CPT (Current Procedural Terminology) code approved by the American Medical Association for this type of electrosurgery. To begin this process a petition will be filed by Dr. Lawrence Taylor on February 7 th . We need people to share their stories and the need for this procedure. Letters of support must be sent BEFORE the petition arrives on Feb 7th.  We have attached a letter as guidance.

LETTERS ARE NO LONGER BEING ACCEPTED. Also, we believe this code will not be approved at this time, but will continue to work towards improving the care of adults with NF. This includes pursuing options like electrodessication and this CPT code if necessary. We know that this effort and everyone’s letters has only moved the cause forward.

Comments (43)

  • Please pass this, anything to help reduce pain in those of us with NF and to do more research is needed. I have some I would like removed but insurance is stopping it.

  • Having a code k so insurance would help cover the cost would be a true blessing. I have many neurofibromas that I would loved removed on places that rub from bra waist bands etc . Being done this way instead of cutting deep to get to the roots and then putting stitches in place would make life so much easier . Having more md trained in this would help too as ney York is expensive to get to and to stay . Please support this request

  • I have tumors in both of my mammos
    not sure if they are anywhere else
    i also have a skin tumor on my left mammo
    there very painful hard to wear some shirts/tank tops
    and i can’t follow my dream and get a modeling job cause of the tumors

  • I have nf1 and would really like for this to be approved. I have lots of painful neurofibromas that need to be removed but insurance can be tricky and out of pocket is not possible. My 3 year old son also shares my same struggles. Please help us and many others out by signing this. Thanks, Aubreye Nystrom

  • I have NF1. My face is disfigured from large amount neurofibromas.I know that if this CPT code is approved it would greatly improve the quality of my life and so many others who live with NF on a daily basis.

  • I have a friend who’s son has NF & I would like to see this bill get approved. Please take into consideration the pain and suffering NF causes. Thank you

  • This would help so many people who are suffering…I have a little boy who is dear to my heart, who has one in his brain, who should not have to worry everyday about what can happen to him, he’s only 7…

  • This will help me and others so very much. I have a severe case of NF. From the top of my head to the bottom of my feet (literally)!! My face is covered and torso. Although I know that all that I have cannot be removed, at least some of them. I hurt everyday from some of them and rest of them come from emotional pain that I suffer. So in addition of the pain that NF causes, we also have to deal with people not knowing, looking, staring and making rude comments that make it even harder to deal with. Please sign!! It would help so many of us that suffer with NF. I also have two young adult children with NF tumors in which some are painful. Again please help and sign and let this get approved for all NF sufferers.

  • HELP! PLEASE! I don’t want to look like this anymore, this is heart breaking. For the ones that have this, we need your help, Please approve, I have NF 1 and when I learned that I had this , I came home crying, I thought I was the only one the earth that had this, I never heard of NF1, Why me? Now I learned that I’m not the only one. We are many, Children as well, We need help, I don’t understand why you people don’t what to see how desperate this is , for baby’s children and adults

  • Please approve this and do anything you can to help those with nf1. I have a loved one who suffers from this and want to see him live a long healthy life.

  • Please , Please , pass this Bill that the pain may cease for NF1 and 2 paitient’s. It is one of the most painful and uncomfortable disorders. Imagine not being able to wear a bra or shoes because it rubs in such a way that it causes you so much pain and discomfort. Or having so many tumors that you don’t want to go out in public because you are afraid of what people will say. Not having a job anymore because your hands, feet and legs won’t support you any more. Please reconize this disorder . So that other people may live semi to ordinary lives. TY for listening.

  • Please approve this. My daughter has NF1 and this would help remove some of the tumors that rub because of the bra line. I hope that this is approved for all the NF family that need help.

  • This will go further than just this, i cant get life ins because of NF and im healthy as a horse, this is just the first of many battles to win the war, God Bless,

  • The numerous Fibromas I have on various parts of my body are extremely painful. Removal of them, especially if several could be done at once , would make day to day living less painful. Please consider this bill, It would make life so much more pleasant and bearable.

  • I have been praying for this my whole life…being affected with NF1 ALL MY LIFE, my poor father who was covered head to toe…me being insecure and ashamed not understanding, problems with drugs and alcohol just to cope…by the grace of God, i have 8 1/2 years clean..COULD IT BE…A SWEET GIFT FROM GOD………PLEASE PLEASE TELL ME IT IS SO………………………..IF NOT FOR ME THEN MY SON AND FUTURE GRANCHILDREN……IM so full of hope…my heart is beating fast

  • I have a grandson 5 yrs old would like to see the best treatment possible, so he can grow up with a normal life. Why would it be a question.

  • Just want to be sure everyone understands that we each have to actually send an email. It is not enough to just leave message of support here or on Facebook.
    The organizations and physicians can also send emails of support.

  • My brother, Jeffrey King,has NF-1. Please help get this code changed so he doesn’t lose what little self esteem he has left,so he isn’t constantly in pain,and most importantly, so he can look in the mirror and smile.

  • I have a daughter-in-law and a 4 year old granddaughter, (newly diagnosed) with NF2… All people with the NF disease, whether 1 or 2, need our help… thanks

  • I have countless of painful skin neurofibromas all over my skin. If this goes through, it would be a great blessing for all of us that are suffering from this disease. NF is a lifetime disease and doing a procedure such as this one will have a major difference in our lives. God Bless the people who are working together to help us all.

    Am I too late to send a letter?


    • Yes, it is too late to send a letter. We don’t believe this will be approved this time, but we will keep doing whatever it takes to improve the care of adults with NF.

  • Living with NF1 is one of the most difficult things I have to deal with in life. My body is covered in skin tags which bleed and become swallowing during stressful times. The other issue is not being able to wear certain clothes or not being able to swim with my children due to people staring at me. I would love nothing more then to have theses removed. And be able to do things with my kids without people staring or and asking what is wrong with my skin.

  • I’m praying that this is passed
    This would be a blessing to my life
    I to would love to be a model. It would
    Help me to be more outgoing less depress.

    • It might help to have the support of CTF but they have stated flatly that they don’t see a need for this, though people are being denied through there insurance or sent to docs who really aren’t doing the same thing.

  • I would love for this to be passed my daughter and I both have NF1. If it came to it and tumors had to be removed I would want it covered and it be easy for the insurance to find ‘re: cpt and icd-9 codes.

  • m a concerned father what will this procedure do for those with NF1 I can’t even imagine what you go through but I know how I feel when I think about my daughter and how much this procedure is really needed please if anybody out there that IS Listening to the people that have concerns please pass the bill…

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