“Unfortunately, insurance companies use unsubstantiated reasons to deny treatment so they can save money. This is the stark reality of our insurance system, leaving cancer patients to battle many issues on top of the already insurmountable one of cancer.”
In October 2015, I was diagnosed with stage 2B cervical cancer that had unfortunately spread to one of my lymph nodes. The diagnosis was terrifying and cracked my world in half, but I was under the care of an incredible team at Dana Farber Cancer Institute/Brigham and Women’s Hospital in Boston. My doctors recommended I undergo radiation and chemotherapy to treat the disease and stop the spread through my lymphatic system. The protocol called for 30 rounds of photon radiation therapy and six rounds of chemotherapy. It was a brutal regiment, leaving me feeling weak, extremely fatigued, and nauseous.
Three months after treatment ended, I went in for my follow up PET/CT. The scan showed that while the cancer was no longer on my cervix or in the original lymph node, it had spread to my paraaortic lymph nodes – located next to the vertebrae in my lower back.
Doctors moved me into surgery to extract the cancerous lymph nodes. From there, I was transferred to Massachusetts General Hospital so that I could undergo a different type of radiation called proton therapy. Because of the location of the infected lymph nodes, my oncologists were particularly concerned about sparing my kidneys and bowels from the radiation to avoid having me deal with major lifelong complications. I was young and otherwise healthy with a long life to live post-cancer.
As I was physically and emotionally preparing for treatment begin, we learned my insurance company UnitedHealthcare (UHC) rejected my claim for proton therapy. Shocking to hear given it was recommended by my oncologists at two of the most prestigious cancer institutes in the country. The denial letter stated they found my proton therapy to be “experimental, investigational and unproven,” which contradicted evidence my oncologists provided.
My oncologists continued to fight, sending more evidence proton therapy would cure me and prevent complications down the road. Every appeal was met with another denial. My husband and I engaged local legislators, the U.S. Department of Health & Human Services, and my company’s CFO to contact the insurance company on our behalf. It was very surreal to not only be battling the cancer but also my insurance company. It all took a substantial emotional and physical toll on my family and me. I remember calling the insurance company from my chemo chair, begging them to overturn their decision.
Devastatingly, UHC upheld their denial leaving my family with the decision to have to pay for the $100,000 treatment. While we were fortunate to be able to do so, we should never have been put in that position.
Almost four years later, I am lucky to say my proton therapy treatment was a success. I am cancer-free, and my kidneys and other vital organs are also healthy. Because of protons, I am not faced with battling other health issues I like would have had to contend with if we went the traditional radiation route. I have a very high quality of life post-cancer.
Since this hellish ordeal, my family and I have filed a class-action suit against UHC for failing to uphold its fiduciary duty to me.
There are countless other cancer patients with stories like mine that need oncologist recommended proton therapy to cure them and secure a healthy life post-cancer. Unfortunately, insurance companies use unsubstantiated reasons to deny treatment so they can save money. This is the stark reality of our insurance system, leaving cancer patients to battle many issues on top of the already insurmountable one of cancer. Protons have been proven to be effective. It has prevented me from undergoing additional treatments to address complications from the radiation.
I am proud to be a champion for the Alliance for Proton Therapy Access to spread awareness of this critical issue to help get cancer patients access to the care they need, not the care their insurance companies dictate.
Back in 2018, Kate’s story was profiled on CNN. You can learn more by going here.