Social Determinants of Breast Cancer
Why Do Young Breast Cancer Patients Have Worse Outcomes?
Since I was diagnosed with breast cancer at the age of 24, almost two years ago to the day, I often hear people say, "At least you're young!". Until I did further research I thought the same thing. I thought that being young meant I had better chances of survival. Unfortunately, it's the opposite. Young adults with breast cancer are more likely to be diagnosed at a later stage, have higher mortality rates, have more aggressive tumors, and increased risk of metastatic recurrence (Anders et al., 2008). My experience closely reflects these statistics. I was diagnosed with stage 3 triple-negative breast cancer. It was grade 3 - the most aggressive and fast-growing. I had a 5.5 cm tumor that I found while I was in the shower since mammograms don't begin until age 40 to 44. When I went to the gynecologist they were adamant that it was probably a benign cyst and told me that I was "too young" to have breast cancer. Luckily, my doctor still ordered a mammogram and ultrasound for me. For many young breast cancer patients, this is not the case. There are way too many stories that begin with delayed diagnosis, even after seeing multiple doctors. For women of color, this happens at an alarming rate.
I want to share my experience to paint a picture of why these statistics are the way they are. After a year and a half of chemotherapy, surgeries, radiation, and immunotherapy my cancer metastasized to my skin making it stage 4. I am now on chemotherapy indefinitely since stage 4 has become a chronic lifelong illness that is managed. I turned 26 in April of 2023, which is normally a time of celebration for most healthy young adults. Instead, I spent my birthday and months after spiraling about losing my parent's health insurance coverage at the end of the year. Since I'm permanently disabled due to stage four cancer treatment, I qualified for NJ FamilyCare. I felt a sense of relief that I would be covered in the upcoming new year.
In anticipation of this change, I tried to be proactive months before this transition. I started asking my insurance company and oncologist's office questions about coverage, authorization, etc. They said that because my oncologist's office is in an outpatient setting, my chemotherapy would most likely be denied. They said that I would most likely still be able to see my oncologist there but that I would probably have to go to my local hospital to receive the same chemotherapy drug. I was so thankful that I could keep my oncologist but I was confused about why I may not be able to receive treatment with them anymore. I became so close with all of the chemo nurses and office staff over the last couple of years. Thinking about receiving treatment in a hospital gave me so much anxiety because my mom passed away from Leukemia in 2006 in the hospital. Receiving treatment in an outpatient setting is honestly one of the only things that has kept me sane in the last couple of years.
In December I asked my oncologist's office if they could submit a pre-authorization to my insurance company, this way I could schedule an appointment with the hospital if I needed to. They told me that they wouldn't be able to submit a prior authorization until I officially lost my parent's insurance as my primary. I was told they must wait until the new year to submit the prior authorization. Now that it's 2024, I called my oncologist's office to see if the prior authorization was submitted. They said that because my new insurance provider still had my parent's insurance listed as my primary, they were unable to submit it until it's been updated to be my primary. They told me I needed to call my insurance company and ask them to make their policy my primary.
I immediately called my insurance company and was told that they would update it but that it would take 7-10 business days for the investigation to be done. I explained that I have stage four cancer and that this will delay my treatment and scans, but she gave me the same answer again. I'm supposed to receive chemotherapy tomorrow but now I'm being told that my doctor's office won't be able to submit an authorization until at least 7-10 business days from now. Then, once they make this insurance my primary, the authorization will take about 3-5 business days to be processed. That's a potential three-week delay just for me to find out if I can receive treatment at my oncologist's office. If it’s denied, I can only imagine how much longer it will take me to get an appointment at my local hospital.
I’m not one to complain to customer service representatives because they’re just following policy and procedure; the problems I have are at a systemic level. We are made to believe that these are individual problems, however, given the statistics, it's time for something to change. It comes as such a shock to us that young people, who have their whole lives ahead of them, have such poor prognosis. This is a real-life example of why the statistics are sad but true.
It's hard enough living with stage four cancer and processing that, but it's even harder when there is a lack of policies in place that protect this vulnerable population of people. So when people wonder why young women keep dying from breast cancer, this is why. We wear pink in October to raise awareness for breast cancer but I think it's fair to say that we are all aware of breast cancer and its insidiousness. What we're not aware of is why young women continue to experience dismissal of symptoms, delays in treatment, and lack of support on a policy level. For most people, three weeks doesn't sound like a lot but when the 5-year relative survival rate for stage IV breast cancer patients is 30%, time is everything (American Cancer Society, 2023). Treatment delays are unacceptable.
I'm hoping that you can understand my frustration. I think about the children and families who’ve lost loved ones because of something preventable. Eliminating delays in treatment due to insurance processing procedures and policies is not unrealistic. It's been done before with SSDI and their compassionate allowance program that fast-tracks applications for those meeting criteria. Also, in September 2022, the House of Representatives passed the Improving Seniors’ Timely Access to Care Act of 2022. This act requires Medicare to establish an electronic prior authorization program that provides real-time decisions and annually published prior authorization information like average response time (Lovely, 2022). This transparency and accountability are needed not only for older adults but for young adults with chronic life-threatening illnesses as well. According to the American Society of Clinical Oncology (ASCO), prior authorization is consistently identified as the largest barrier to care for insured patients (Lovely, 2022). The consequences of these delays are potentially deadly.
Delays in treatment and diagnostic imaging as a result of insurance changes and prior authorizations are just some of the many disparities that impact young adults with cancer. Some others include lack of access to fertility preservation, unique financial burdens, career instability, etc. Let’s stop wondering why mortality rates are so high for young adults with breast cancer. Let’s stop treating cancer like an individual problem and focus on eliminating barriers in our society that are leading to poorer health outcomes and overall lower survival rates. The system is failing us and we deserve better.
References
Anders, C. K., Hsu, D. S., Broadwater, G., Acharya, C. R., Foekens, J. A., Zhang, Y., Wang, Y., Marcom, P. K., Marks, J. R., Febbo, P. G., Nevins, J. R., Potti, A., & Blackwell, K. L. (2008). Young age at diagnosis correlates with worse prognosis and defines a subset of breast cancers with shared patterns of gene expression. Journal of Clinical Oncology, 26(20), 3324–3330. https://doi.org/10.1200/jco.2007.14.2471
Lovely, B. (2022, December 22). Prior authorization hurdles delay oncology care. OncLive. https://www.onclive.com/view/prior-authorization-hurdles-delay-oncology-care
Survival Rates for Breast Cancer. American Cancer Society. (2023, March 1). https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-survival-rates.html