Fighting the Good Fight: Oncologists, not insurance companies should dictate patient treatment plans

I began reaching out to my insurance company the first week of April about obtaining coverage for proton therapy for my radiation plan after recommendation from my radiation oncologist at UF. Since then it has been a nightmare even figuring out who to speak to about how to submit a request for them to look at, let alone how to appeal something after the denial. It has been a constant source of frustration, and will become something that I will remain passionate about long after my cancer battle is over. I look forward to using this hardship in order to help advocate for better patient care with insurance companies. Who knows where this will lead me in the long run - I know God has a plan. Below I am copying and pasting a letter that I wrote myself to my insurance company. It is called "a letter of reconsideration" which is allowed after I was denied medical necessity for proton therapy when my case was reviewed. After this letter gets a response, if still denied, I will be able to begin the denial appeal processes (which took me weeks to figure out who/how to even contact someone). I hope that this letter helps educate many others about proton therapy, why it is beneficial in left sided lung cancer, and gives others the motivation and desire to fight for the oncological plan their physicians feel is in their best interest, no matter wha the insurance company says. I can not put into words how frustrating it is to be denied treatment that some of the best radiation oncologists and teams in the World have put together for me at the University of Florida. Here is what I sent in to my insurance company this morning, I appreciate the continued support as always through all the mountains and valleys of being a cancer patient.

Letter of Reconsideration – CIGNA INSURANCE

Proton Therapy Medical Necessity Denial

Good morning,

It breaks my heart that I have to reach out like this today, to beg for reconsideration of a denial decision of medical necessity, which stops me from obtaining the best oncologic care that I can. My name is Sami Pickens, and I want to give you a moment to get to know me for more than a claim number. I am 29 years old, and currently battling recurrent left sided breast cancer. In April of 2019, at 28 years old, I was diagnosed with stage 1 breast cancer. How lucky and blessed am I to be so aware of my body that I found my lump when it was still under 2 cm with no progression to my lymph nodes providing the opportunity for cure? I underwent a prophylactic double mastectomy, and never missed a dose of the hormone therapy I was started on. Unfortunately, January of 2020 I again felt a lump, again obtained immediate medical care, and again was diagnosed with left sided breast cancer. This year has been a whirlwind of working full time as a clinical pharmacist during a pandemic, a partial mastectomy, starting chemotherapy, accepting the fact that I needed a psychologist, and arguing with you all about the plan for radiation therapy. I spend my day at work advocating for the best medical care for every single patient I encounter, and this letter is my opportunity to do the same, but for myself this time.

Prior to my breast cancer diagnosis in 2019 I had zero health concerns. In fact, do you know how I found my original lump? I was sore from doing so many push-ups and pressed on my PECS and found it. This year in February 2020, even after the double mastectomy and treatments last year and finding out about my recurrent cancer I ran my first half marathon for the Donna Foundation. To say a cancer diagnosis was a shock, is the understatement of a lifetime. I am sure you yourself, or you may have family members that can relate to that feeling. I am lucky to live in Gainesville, FL and obtain the best evidence based oncological medical practice from the University of Florida. Go Gators! The radiation oncologist I saw at the University of Florida was very concerned about the likelihood of adverse events from intensity-modulated radiation therapy (IMRT). Due to local recurrence, there is an increase need to radiate the greatest area of the chest wall as possible (that’s the whole point of the treatment!), which in turn creates a likelihood to also hit organs close by including the heart and lungs with worrisome long term effects. My radiation oncologist completed a simulation of a radiation day, to show the difference in how IMRT or proton therapy would cross my body. This simulation proves medical necessity.

I really enjoy visual representations of data when I attend any type of medical continuing education presentations or conferences. I hope that you will look at the following information and consider if this was you, your mom, daughter, sister, or aunt which therapy would you fight for them to have?

The first chart shows the difference in outcomes with proton versus IMRT. I have highlighted the important differences between amount of radiation to my chest wall, and amount of radiation to other organs, which as my provider already stated, cardiac toxicity is the most worrisome.

As you can clearly see not only do I obtain greater chest wall radiation with proton therapy compared to IMRT, the whole point of treatment – but also, I have significantly less radiation to all other places of the body. This is always the goal for any radiation plan concerning heart toxicity “as low as reasonably achievable”. Looks to me like proton therapy not only allows for best chance of being cured of cancer, but also allows a significant decrease in radiation to my heart (and many other organs). In case you would like a different visual representation of my simulation, below you can find the difference in desired out comes between proton and IMRT.

The number of weighted objectives met with IMRT for my specific body simulation and location of recurrent left-sided breast cancer can be found below, you can find the full report in my original medical necessity packet. A provider’s goal obviously is to hit GOOD or at least ACCEPTABLE especially in a young, curable cancer patient if able.

The number of weighted objectives met with PROTON therapy for my specific body simulation and location of recurrent left-sided breast cancer can be found below. You will notice the lack of unacceptable, or marginal objectives with this treatment option, as well as double the number of acceptable and good objectives met.

My medical necessity packet was denied due to lack of long term outcomes in breast cancer according to my summary plan details “as stated by the physician”. I would like to again highlight the full information provided in my medical necessity packet from my provider, as it seems we are stuck on only a partial picture of what the advantages and disadvantages are of proton therapy for me as a young, curable, left-sided recurrent breast cancer patient.

The original letter from University of Florida radiation oncology reads as follows (can be found in the original medical necessity packet):

“We discussed the various radiation modalities including convention radiation therapy and proton therapy. We discussed conventional radiotherapy cardiac techniques including breath hold and IMRT; however, there are data to support that these techniques cannot achieve as low of a heart dose as proton therapy, particularly when the internal mammary nodes are radiated (Taylor et al IJROBP 2015). Even in national breast protocols, although heart constraint goals are given, the overarching stated principle is ALARA (as low as reasonably achievable). We therefore recommend evaluation of proton therapy to minimize and likely eliminate the dose to her heart. This is especially important given her young age. The risk of cardiac disease manifests many years after radiotherapy and is not known to plateau. She has a curable breast cancer, and late cardiac toxicity is a concern given her young age. We explained proton therapy for regional nodal irradiation in breast cancer has been used for less than 10 years, and therefore long-term outcomes specifically for breast-cancer are still in development; however, dosimetric studies and early clinical data support the use of proton therapy in this setting. In addition, data from other disease sites treated with proton therapy show equivalent efficacy and in many cases decreased toxicity, particularly late toxicity.”

There are further studies that have been completed thus far to show a difference in outcomes as mentioned above, and currently three clinical trials occurring at UF Proton Institute in Jacksonville, the very place I am asking for treatment in order to prove the long term outcomes. The first is, “UFPTI 1419-BR02: Prospective Pilot Study of Early Markers of Radiation-Induced Cardiac Injury in Patients with Left-Sided Breast Cancer Receiving Photon or Proton Therapy”, of which I meet all inclusion criteria. The second is, “Pragmatic Phase III Randomized Trial of Proton vs. Photon Therapy for Patients with Non-Metastatic Breast Cancer Receiving Comprehensive Nodal Radiation: A Radiotherapy Comparative Effectiveness (RADCOMP) Consortium Trial”, of which I meet all inclusion criteria. The third is, “Early Markers of Subclinical Pulmonary Vascular Radiation Toxicity in Breast Cancer”, of which I meet all inclusion criteria.

Unfortunately, with a cancer diagnosis, I, like all cancer patients, cannot wait 5—10 years for those “long term” results to be published from any of those three trials. I must start radiation therapy within four weeks of finishing my chemotherapy.

I believe that this medical necessity denial directly opposes Cigna’s mission and core of culture which according to the website is the following, “As a global health service company, Cigna’s mission is to improve the health, well-being, and peace of mind of those we serve by making health care simple, affordable, and predictable.”

This whole situation of constant back and forth about coverage of treatments has created immense additional stress over the past month and a half while undergoing my chemotherapy treatments. Chemotherapy in itself is hard enough for anyone. I deserve the best care available (as any cancer patient does) and I hope that this letter will bring about reconsideration with a favorable outcome.

Sincerely,

Sami Pickens