"Medically unnecessary." Those were the words printed in large letters across a document of denial I recently received from my insurance company. My oncologist ordered a new type of recirculating compression pump to alleviate the extreme swelling in my upper extremities. This condition, called lymphedema, occurred shortly after surgery to remove both of my breasts and several lymph nodes in each arm. As I read the letter, I became very upset. As I reread the letter, I became angry. How dare these insurance company agents determine what is and what is not necessary for my health? Shouldn't my oncologist be more educated in matters pertaining to breast cancer and the side effects? I certainly thought so. Toward the end of the letter, after the insurance company had supplied their standard explanation for the denial, were instructions on how to submit an appeal. Finally, a ray of hope! I was definitely going to do that, but first, I had to contact my oncologist and prepare for battle.
The letter stated I had not "exhausted all means to reduce the swelling." They said I had not "tried other methods available" and I had not "tried exercise, massage, raising the affected part or elastic bandages and garments." They said they "didn't see where other treatments were tried and didn't work for you." Boy, did I have some information coming their way. I read on and the letter of denial said, "This decision doesn't mean that you can't or shouldn't receive this service. Only you and your health care providers can decide whether you need it. But, this decision means that if you do receive the service, it won't be covered by your plan." We'll see about that, I thought to myself. The insurance company had no idea what I'd been through over the past year and a half and how I tried so many things to treat this uncomfortable condition.
For months, I’d been sent to a certified lymphedema therapist for manual lymphatic drainage. Every day for weeks upon end, I traveled an hour to and from the clinic for treatment. When that didn’t seem to be working, the therapist wrapped my arms in cotton gauze and topped them with elastic compression bandages. I would come out of the clinic looking like a mummy. It was humiliating. The next step was for my breast surgeon to order some lymphedema compression sleeves. The insurance company approved four pairs a year and I was thankful for that. Though colorful and cute, those sleeves were uncomfortable and hot in the summer. I wore them daily as instructed and still, the swelling continued. On my most recent visit to the oncologist, he noticed the swelling had increased, and that’s when he decided that we had to take drastic action. He ordered recirculating compression pump and said it would allow me to have treatment in the comfort of my home. It wasn’t an easy process to use the new compression pump. I found that out when the representative for the company came out to give me a demonstration. I had to strap myself into what appeared to be a large, brown straight jacket with hoses attached to it. Once the jacket was on, the hoses had to be attached to the recirculating pump and I had to sit for an hour while I was systematically compressed all along my arms and trunk. While time consuming and inconvenient, I saw marked results after my very first session! It seemed this was exactly what I need to provide much needed relief from the daily swelling. Finally, a treatment that worked!
I made a call to my oncologist's office and left a message for my doctor. I told him about the denial letter and asked if he'd be willing to submit more documentation to substantiate the medical need for the equipment he ordered for me. His assistant assured me that she'd get the message to him and there would be no problem in him providing whatever the insurance company needed to appeal the claim. I was thankful to have that assurance tucked safely in my arsenal.
After calling the cancer center and giving my oncologist a heads up about the denial, I contacted the company that manufactures the recirculating compression pump. I talked with a representative there and told her about the denial letter I received and asked what I needed to do to provide them with more information. They agreed to also submit a request for review and reconsideration. The representative suggested I take photographs of the swelling and submit those along with a handwritten, personal testimony of how lymphedema has impacted my life. Her suggestions seemed like very valid ways to present my case. I thanked her and agreed to copy her on my letter. I had no idea how to write an appeal letter to an insurance company. I didn't know what they needed to change their minds about whether the equipment was medically necessary, but I was going to give it my best shot.
As I waited for my computer to boot up, I gathered my medical notebook. This is where I kept a record of each and every lab result, test, surgery or medication since I was diagnosed with breast cancer. The notebook had started out completely empty at the time of my diagnosis and grew to be almost three inches thick with medical records. I flipped through the notebook marking pertinent information with sticky notes so I could refer back to them easily as I prepared my letter. I opened a blank document in my word processor and began to write. I was surprised at how easily the words came to me. I decided not to fill the letter with medical jargon, although I knew that was something the insurance company would easily understand. Instead I decided to write the letter so they would feel my heart and understand that I was a real person with valid health issues. I wanted them to know what it felt like to wake up first thing every morning with arms so swollen and painful that it was difficult to get out of bed. I wrote about not only the physical limitations lymphedema imposed on my life, but also about the pain and humiliation that went along with it. I explained that the swelling increased the girth of my upper arms so much that I have great difficulty finding shirts and blouses that I can even fit my arms into. I wanted them to understand the swelling gets worse as the day goes on and often by midday, I have to sit with my arms elevated for a hour or so before I can continue my normal household duties, because they are so swollen and sore. I followed the representative's advice and listed every single treatment I tried to combat the lymphedema. I put dates and locations. I even took my cell phone and snapped photos of my bare chest and upper arms so the insurance agents could see what I was trying to explain. By the time I completed it, my letter was three pages long. I felt like I did my best to provide adequate information for reconsideration of my claim.
It's so frustrating to have to defend myself to the insurance company. We pay our insurance premiums on time every single month and have done so for more than 35 years. Why is it, that when they decide they don't want to pay out a large sum of money for a fairly new medical treatment, the claim is instantly denied? I wonder if most cancer patients who receive a denial take the time to fight back or if they just accept defeat and end up paying for whatever they need out-of-pocket. It seems a great injustice is done to those of us who have already been through the trenches of war in a battle we never chose for ourselves. Then, to have to fight for what insurance companies deem medically unnecessary just doesn't make sense.
Yes, I understand the insurance companies want to find ways to hold on to their money and avoid paying unnecessary or unsubstantiated claims, but good grief, don't they think an oncologist is the best one to decide their patients’ needs? All that medical schooling to specialize in the field of diagnosing and treating cancer must give them a whole lot more expertise than a few board members sitting around a table at an insurance review board, don't you think? I sure do and I would advise any patient to stand up and fight for their rights. The letter said, in big bold letters, "You have the right to file an appeal," and that's just what I did. Now I have to wait and see what happens next. I'm praying the documentation I provided will be enough, and even if mine isn't quite what they need, perhaps my doctors' information will cause a reversal of the denial of the claim.
I wonder how those insurance agents would feel if they received that same type of denial letter when seeking treatment for one of their loved ones. I bet they'd seek an appeal, too.
I have been selling devices including pumps and other items for the treatment of lymphedema medicare severely restricts what they will pay for in lymphedema treatment garments 12 chamber pumps which can be more effective they have a whole protocol you have to go thru to qualify for a compression device elevation, garments, physical therapy including bandaging if you have documentation that all these treatment have failed to control your swelling you have a chance at getting a lymphedema pump approved you can go to my website to see different products and pumps which are available www.physicianmedical.com best wishes you will probably get there with a lot of documentation and trying other less expensive treatments first most private insurance companies follow medicare quidelines which were just made more restrictive Kathy bates the actress has been lobbying on our behalf to get more treatments covered thru a lymphedema advocacy group called L.E.A.R.N lymphedema education and research network hang in their it is very difficult the condition to deal with Kathy bates was just on cbs sunday morning talking about this LACK of medical coverage
There is a wealth of information on lymphedema patients' rights, appeal procedures, and other lymphedema treatment issues on my LymphActivist's Site at www.lymphactivist.org. Descriptions of your condition and their impact on your life are useful in disability insurance cases, but are of limited or of no use in appealing denials of treatment.
One thing I have learned after 20 years of fighting Medicare and other insurers is that appeals can only be won within the rules written in the Evidence of Coverage and associated policies. This is the legal contract between you and the insurer. These policies must be requested and read from beginning to end, and arguments developed and supported with medical evidence in your physician's or therapist's notes and in your medical record. Clinical evidence from medical journals are used to demonstrate that the procedures are no longer experimental, and your physician must relate them to your individual medical condition.
The key document that you should become familiar with is the new Medicare Local Coverage Determination (LCD) on Pneumatic Compression Devices--an extremely controversial policy revised in 2015, and is the model for insurance companies. You may find an annotated version on my web site at http://www.lymphactivist.org/pneumatic_compression_devices-2015.pdf
Good luck! And keep the pressure on your insurance company.