The Lymphedema Treatment Act was passed in December of 2022 but didn’t finally go into effect until this past January. Though we have known for decades that compression can save limbs and prevent life-threatening conditions, so-called health insurance has refused to cover simple garments that can be life-saving and limb-saving medical devices. Compression works to help move fluid out of the limb and disperse it properly.
Insurance companies spend millions of dollars lobbying in DC to stop the government from forcing them to provide medical care. Remember, these companies only make money when they deny you care. From a profit and loss standpoint, they are better off if you get cellulitis that becomes life-threatening, rather than having to pay to treat the disease before it becomes a life threat, by utilizing basic medical compression.
Insurance companies try to build the best “pool” they can in order to make the most profit. That pool is actually supposed to have all of us in it, but they don’t really want that. They want as many healthy people as they can get because those people pay their premiums but never use medical care, which tends to leave those people with a false sense of security. Ignorance is bliss, and you don’t realize how rigged the health insurance system is against you until something severe happens to your health or the health of a loved one. Those collected premium dollars line the pockets of executives who enjoy millions of dollars in salaries and bonuses, all while threatening to cut benefits to the American people. As a simple matter of maximizing profits and stock value, they will deny you access to healthcare. It’s grotesque greed of the worst kind, and Americans pay the cost of it with their lives.
I’ve seen them face to face, these insurance executives. A gaggle of Chief Medical Officers. I’ve looked them in the eyes and witnessed the complete lack of humanity. Their ability to justify denying healthcare while celebrating their immense profits is simply mind-boggling to me.
In a Zoom room looking at each person, all of them doctors except for one, I felt some hope as each person was introduced. These were doctors with specialties in pediatrics, emergency medicine, and more. I wanted to touch the parts of them that were once interns. I thought about how I felt the first time that I truly made a difference on an emergency call. I have moments where the smell of diesel or the sound of a humming engine takes me back to the days of being an EMT. How much I long to be that person again, when I was still physically able to help save lives. It’s difficult to imagine how someone can start out as I did, but someday get to a point of putting profits ahead of everything.
I was one of three current patients present on the Zoom call. There was also one person who represented a patient who had died. They had lost their loved one in part by denied and delayed care, a life cut short so one of these executives could enjoy their next bonus and buy another luxury car.
Each of us expressed our stories, spilling the most painful moments of our lives. In one story, a 29-year-old woman had been denied a life-saving surgery and given five years to live. Another woman with the most painful disease known to modern medicine, CRPS (Complex Regional Pain Syndrome) was denied access to life-saving infusions, another a diabetic denied appropriate insulin, and so on. In the face of all this pain, fear, and suffering being shared in these stories, these health insurance executives didn’t flinch. Not one of them even said something like “I’m sorry to hear that you’ve gone through this.” Each of them sat and stared blankly, seemingly just waiting for this Zoom meeting to end.
Then “something” happened, in the last fleeting moments of the meeting their VP of Communications suddenly spoke up to attack us. Apparently, she wasn’t there to communicate WITH us, but AT us to try and intimidate us. She stated that United Healthcare wouldn’t meet with us again, since we got in the face of their CEO when he was testifying before Congress.
Several of us traveled from across the country to be there, just so we could see Sir Andrew Witty face to face, and asked him to PLEASE hear our stories. We wanted him to listen to us, the members of United Healthcare, and how we are struggling to access the medical care we need to live. Yes, we stood before him and begged him to hear our cries to live, and he not only refused but had his people attack us for daring to try.
Begging millionaires to cut their salaries in order to let us live is what we have been reduced to. We were the peasants before “Sir” Witty. In fact, Queen Elizabeth II knighted Andrew Witty, the CEO for making a lot of money.
He grew up with a national healthcare system that enabled him to access the medical care he needed, but he couldn’t profit from it. So he became the CEO of GlaxoSmithKline and made millions selling overpriced drugs to the peasants who could afford them, and denying them to the rest. He has spent his life profiting off of the suffering of millions. I should have known better than to hope that he had a heart and a conscience.
I still find myself in a state of traumatic shock from my meeting with the Chief Medical Officers of United Healthcare. They are the fourth largest company in the United States. They deny millions of claims each year, automatically based on certain keywords. These are never even seen by a human, meaning that a person’s life can be put at risk because an AI bot rejects a treatment or medication. A computer reduces a human life to liabilities and write-offs.
So now that the federal government forces health insurance companies to cover compression for the treatment of lymphedema, that means we can all get compression, right? Wrong. What the government failed to do was to protect people against arduous requirements.
Insurance companies make medical supply companies unpaid laborers. They require supply companies to have office notes from your provider, and these notes have to have very specific information, or the insurance company still gets to refuse compression.
So even today, a whole lot of people who need these limb-saving life-saving compression garments are going without if they cannot afford to pay for it themselves. For myself, a lymphedema sleeve and glove is over $200 for just one set. You should have at least two good sets on hand, so you can wash one and wear one. Another $400 out of pocket will not count toward your deductible. If you have a Medicare (Dis) Advantage plan like I do, then you are looking at a $5000-8000 deductible, and none of this will count if you can’t get the claim approved.
Insurance companies spent millions of dollars lobbying to prevent this law from going into effect. Now that it is, they are using their ability to create ridiculous billing rules to continue to deny care. Remember, they only make money when they don’t spend it on you. They only make money when they let other people die, or suffer so much that they wish for death. I know this because I’ve been there.
I’ve had lymphedema since breast cancer cost me the left side of my chest. Having part of me amputated and my lymph nodes dissected caused a seroma, an infection, at one of my surgical drain sites. Those events left me with lymphedema in my left arm that eventually spread to my left hand and fingers. I certainly did nothing to cause this to happen, but I have to fight to get what I need to ensure that I can keep my left arm.
“Lymphedema is no joke, it occurs when the lymphatic system cannot dispel the fluid in the body. Instead, the fluid builds in the lymph creating swelling, pain often disfigurement that makes using the affected limb difficult if not impossible in some situations. If an infection sets in, it can be fatal. Compression garments are the medicine lymphedema needs to be treated and kept in check. Once it becomes a problem it is often hard to get it back under control.” 1
Modern medicine has the ability to treat this but faces a locked door when it comes to getting that care to patients. My primary physician has written a letter of medical necessity to United Healthcare. It states that I had breast cancer, a mastectomy, and lymph node dissections in 2013. That letter was refused. It’s apparently not good enough, and will not serve as evidence of a medical necessity for me. Despite the science and the law, insurance companies have found a workaround.
Congress allows these companies too much authority for rule-making. They shouldn’t be able to refuse a letter such as the one written for me. Now the insurance is demanding a clinical treatment note that includes the diagnosis, the need for the compression treatment item and compression class, stage of lymphedema, all of which must be documented in my medical record within the preceding 12 months.
Most doctors, especially those of patients a decade into treatment who remain stable, have no reason for this information to be in a clinical note, given that they have no expectation to need it. Then they hit a roadblock when they go to help their patient get compression. So now the patient needs another doctor visit just to try to satisfy all these onerous requirements and get the paperwork figured out. That paperwork, along with the prescription itself, then has to be sent in by the supply company in order for them to be able to bill the insurance for the compression. So now it’s the supply company that has to deny a patient needed medical supplies because of the greed of health insurance companies.
Insurance companies make billions of dollars off of our pain and suffering and it is still not enough for them. Most people in this world are excited if they can get a 1% raise every year. Insurance companies got a 3.7% increase this year from the government for Medicare Advantage plans, and yet they still cried poverty. Not only that, they try constantly to remove coverage. It’s bad enough we have the money ripped from our paychecks. They take it from the general fund and still say it’s not enough.
United Healthcare’s CEO made 25 million dollars last year; that’s 5 million more than in 2022. Wouldn’t we all love a five-million-dollar raise? But to then threaten to take what little healthcare many of us can access away because he didn’t get more is insanity. I’ve only recently realized that we pay United Healthcare, and companies like them, to abuse us physically and mentally.
Compression garments for lymphedema are the same as blood pressure medication for your heart. Without it, you could have a stroke and die. Without compression, you could lose your life to systemic infection caused by untreated lymphedema.
The only way we can change this is to demand it. If you or someone you love is fighting to get the care they need, there are people out there ready to help them fight. I know that if I had not stopped taking the abuse and started fighting a little over a year ago, I might not be sitting here today.
People like to tell me they’re sorry that this is happening, and probably assume that it could never happen to them. At one time, I had multiple jobs and what I assumed was good insurance. I was ignorant of how insurance companies really operate until it happened to me. Until I lost my job, my insurance and my independence cut off, leaving me begging for access to the care I once helped give. How quickly you can go from having it all to having nothing.
How awful to have your life hanging in the balance while people who consider you beneath them deny and delay your access to care. I’ve spoken with sons and daughters forced to watch their parents suffer and die by medical care denials.
The death panels exist; they are in the boardrooms of Big Insurance, and they are the computer programs cutting off care without a soul ever considering the human being behind the request. We as a society have allowed these companies to decide who should live and who should die, and it’s high time we took that power back. Are you with me?
Resources:
(1) https://lymphedematreatmentact.org/about-lymphedema/
Centers for Medicare and Medicaid Services (CMS) issued a final rule outlining the details of coverage.
https://lymphedematreatmentact.org/final-coverage-rules/
Medicare Claims Processing Manual, Chapter 20 – Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS)
United Healthcare Medicare (Dis)Advantage Requirements in addition to the prescription in order to get compression garments.
Clinical/treatment notes: (must include)
The diagnosis, the need for the compression treatment item & Compression Class, stage of Lymphedema, must be documented in your medical record within the preceding 12 months.
We CANNOT use a Letter of Medical Necessity