When You Have to Fight Insurance as a Breast Cancer Survivor

I am a breast cancer survivor and come October when the country goes pink, I am a survivor who is triggered. Complex PTSD is in full regalia as my senses are overloaded when the calendar turns a page and we fall into the pink abyss. As a survivor, it is actually my experience with insurance coverage after my surgery that is the anchor of my emotional and psychological undoing. I have navigated and weathered many a storm along that journey. Although I do not know the specifics of other state or country regulations regarding access and coverage for lymphedema post-mastectomy surgery, I hope the knowledge I do have can inspire others to not give up on their own journeys. Insurance denial is a universal barrier to care. What most individuals do not know, however, is that insurance companies here in the United States can issue an initial denial even when an item or service is legally covered.

This doesn’t just apply to lymphedema. These companies put the responsibility back on patients to pursue coverage through the appeals process. I would appeal to you to read my journey and invite you to take all the information you can and use it to buoy your own.

Together we can then move true insurance utilization forward. Information is power. To affect the greatest positive change we must provide that knowledge on a global level through platforms that individuals who most need it use and turn to. This is the stone I am choosing to cast into my personal abyss in the hope that the ripples propagate a shift in magnitude for access to care for all.

Preventative double mastectomy. Check. No lymph nodes removed. Check. Preventative surgery turning out to be necessary because of extent of disease. Gob-smacked. Lymphedema in both arms and chest. Speechless.

Privilege is only privileged when one does not use their position to speak up for others. Speechless no more.

Breast cancer Survivor. Not a title most would want the privilege of bearing, but it’s mine, and I have come to know I have it for a reason. Fighting is not new to me. Six years ago I was one belt away from my black belt in tae kwon do. Today I fight with a pink belt for Survivors like me who are being denied care for lymphedema occurring after mastectomy surgery. Access to care is mandated and protected for women like me under federal and New York state law yet, on a daily basis these same women are underdiagnosed by their physicians and denied coverage by their insurance companies.

Enough.

The U.S. Department of Labor actually requires all health insurance companies nationally to disclose that protection. It’s called the Women’s Cancer Right’s Act of 1998 (WHCRA) and it’s given to each customer upon signing up for insurance and there after annually. It’s not a request.

It’s a federal requirement. Pick any health insurance contract and you will find an appendix stating that WHCRA exists and that they the insurance company are required under law to follow it. Federal law cannot mandate a health insurance company to cover mastectomy surgery itself. It can only mandate care of complications after that surgery including lymphedema. Here’s the kicker: in 2017 New York state mandated all health insurance writers, subject to state law, to provide coverage for mastectomy surgery.

Pause. Yes, you read that correctly.

In the case of lymphedema after mastectomy, federal law, since 1998, mandates that insurance cover treatment for lymphedema if they provide coverage for mastectomies and insurance writers subject to New York state law have been aware that they must provide coverage for mastectomies here in our state as far back as 2016. Failure to provide coverage for lymphedema treatment, in New York state, is therefore in violation of both New York state and federal law.

Disclosure. These companies are required under law to provide access to care for lymphedema. That doesn’t mean they have to make it easy. And they don’t. Most Survivors receive an initial letter of denial for compression items outright or denial of manual lymphatic drainage treatments due to contract limitations, and patient’s stop right there. Don’t.

For six years I have diligently tried to work with insurance. My unique background has allowed me to navigate better than most. I have been an RN for 25 years. I’m a black belt in insurance requirements for coverage such as letters of medical necessity, coding, prior authorizations and second level appeal information. I have worked through all the proper channels. I have written to the president of our cancer institute, requested to speak at all my second level appeal meetings before insurance committees, met with directors of rehabilitation services and surgical supply companies, talked to therapists and given copies of all the supportive documentation and laws to anyone who needs them. My disclosure is to the insurance companies. So vivid will my description be that the rays of truth give you no place to hide.

That capitol letter ‘S” you now place in the middle of my authorizations number, your internal signal to rubber stamp my status of one so that this doesn’t become public knowledge… I see you and now so will every other Survivor in the state. I did not throw the first punch but, here is my counter, my one dollar law suit. Public information to all who need to stand up to you. Initial denial, second level appeal gymnastics and letters of medical necessity. Immoral. Commercially shrouding yourself in pink in October. Egregious.

I have listened to an 80-year-old woman tell me how she was initially denied coverage for a compression bra to treat lymphedema after her recent mastectomy. I gave her copies of the laws protecting her right to coverage and treatment and the customer service representative on the other end of the phone told her that “the laws were old and no longer used.” The U.S. constitution was signed into law in 1787. Last time I checked laws don’t have expiration dates.

Irony and tragedy. I wish I could tell you this isn’t typical for Survivors like me, but I can’t. This was an employee of a company who prints disclosure notifications annually to all its subscribers that it must follow The Women’s Cancer Rights Act of 1998. Least not forget here the tragedy of an 80-year-old Survivor spending her precious time fighting for something she is protected to receive under law. Again. It’s worth repeating. Insurance has to comply but they don’t have to make it easy. This scenario is not only wrong, but is a representation of what Survivors like me experience on a daily basis. We are forced to jump through appeal hoops and navigate coding mazes for things we are entitled to under law. Who does that to someone that has survived cancer? And when you do don’t you dare think you have the privilege to parade yourself in pink in front of the masses purporting to be on my side of this fight.

Defense. The first tenant of tae kwon do. I didn’t choose this fight. I know how to defend myself, but now I need to use a bigger voice to lift up the voiceless. Information is the offense I was privileged to receive. I was thrown to the wolves after I survived breast cancer, but now it’s my privilege to come back leading the pack.

Insurance wants Survivors to think they are howling at the moon, but there is strength in numbers. Your pack is your family and in mine everyone is welcome and no one is left behind.

Survivor. As such I’ve earned the “extra” time I now have. Stop trying to waste it with your antics.