The Financial Burdens of Cancer
Hello fam! Welcome back to my blog. I hope you are navigating the pandemic with faith and good strides. No one knows when it will end. It will expire for sure, but in the midst of it, we need to live our lives. Keep living, keep hoping, keep thriving. The past few months have been interesting for me because I have had to deal with insurance shenanigans. I have also had to reflect and count my blessings too. Cancer has a way of forcing you to rethink life.
I was diagnosed with Stage 3, triple positive breast cancer in February of 2017. A year prior, I was watching one of Dave Ramsey’s talk on money management. In his words, the sure way to bankruptcy in America was a cancer diagnosis. I did not think much of it at the time. Fast forward to Valentine’s day 2017, I am sitting opposite my ObGyn, and my biopsy report was positive for breast cancer. I was very afraid. I was not afraid that I would die. Nah…. my fear was that cancer will strip me and my family of every nickel and dime. I was afraid I would become a GoFundMe project once we had used all the resourced we had. I kept hearing Dave Ramsey’s words….
Those words were magnified. Worst still I had just sunk $75k in debt and sweat equity to jump start my entrepreneurial baby: TamBo’s Kitchen . Financial toxicity seemed inevitable. I will need chemotherapy, surgery, radiation therapy, immunotherapy and hormone therapy, which included a monthly Lupron shot for 5 years. I sat with my husband wondering how we will survive this ordeal.
“Don’t worry dear, we have a Cadillac insurance”. His former employer was the father of a pediatric cancer survivor. He paid it forward by ensuring that no one will ever go bankrupt because of treatment. A Cadillac insurance. I was still afraid. I fortified the Cadillac insurance and added Masshealth to make it a Bentley insurance (see what fear can do). My cancer diagnosis qualified me for disability benefits during treatment and the money from the benefit was used to pay my monthly premium to Masshealth. It cost over $800.00; Disability paid $500, I supplemented it with $335 a month till I finished immunotherapy. Bentley Insurance worked.
I had the chance to see the bill for one of my Herceptin-Perjeta infusions; it was well over $50,000 per infusion cycle. I did 17 rounds. I had no co-pays for chemo, the mastectomy, the breast implant, the radiation treatment, the immunotherapy… Nothing! Financial toxicity was abated. I was in a better place mentally.
In September of 2019, my husband’s former employer was switching insurance networks. I had gone for my monthly shot and I received a bill in the mail. Each shot of Lupron cost over $6500.00. My heart skipped a bit. I did not have up to $6500 in disposable income. Was this going to be the new normal to pay for Lupron shots? Many questions were firing. I still had 3 years of Lupron shots to go. Insurance settled the bill (finally!). Financial toxicity abated again. With the new insurance, I got my tamoxifen refills for free. Prior I paid $10.00 a month. My health will not be a burden to anyone’s wallet. The feeling was gratifying.
Come February 2020, “le hubby beau” was let go of his work. Thank God, he has found another opportunity. Between February and June, the Bentley insurance was gone. I bought into another insurance so I could continue my maintenance care. I received the shocker of my life when I discovered that none of my providers (medical oncology, radiology oncology, plastic surgery, primary care, ob-gyn) were in-network. In order to get the kind of insurance my husband once had; I would have to cough out close to $1000 a month in insurance premium. Haba!!!
The past 4 months have been mentally torturing to say the least. I could not go for any of my yearly appointments. The thought of switching doctors was too much work. See, having a patient centered provider who knows you and understands your whims and caprices is rare. It is a relationship you must nurture. It is like dating. I do not feel like dating anymore. I was with my first PCP for 15 years. I fired him because he stopped taking me seriously when I complained about the acid reflux and Graves disease. My very first OBGYN was good to go. He delivered Tami and Bolu. I had to switch because he moved to Virginia. For me to stay with the new network (I pay $432 out of pocket a month o!), I will have to say good-bye to all my former providers , start afresh, get acquainted with the new docs and ensure they are up to speed with my health history. I begged the insurance company to give me an out of network referral but it was an emphatic NO.
I would need to have a new PCP assigned to me by insurance. My PCP will then refer me to all the specialties I needed. I did not have to do this prior. Remember, Bentley insurance afforded me the opportunity to pick my doctors, not the other way round. I was now at the mercy of a new doctor who did not know me. I had to trust that she had my interest at heart.Thank God for therapy. My psychiatrist helped me to navigate the mental conundrum. I was no longer in active treatment. I just needed to see them once a year. There was no need to be joined at the hip. I will bite the bullet. The last thing I want to do is play with my health.
You might be reading this and saying….”Toyin it’s not your fault, you are complaining because you have to switch doctor, some people cannot afford the cost of care…count your blessings”. Yes, I count my blessings. I am privileged by God for showing me mercy and I am also privileged to be married to someone who works in companies where good insurance packages are offered.
As I count my blessings, there are days that I reflect and wonder how folks, not as fortunate as I do it. According to the National Cancer Institute, ‘several studies show that cancer patients and survivors are more likely to have financial toxicity than are people without cancer. The level of financial toxicity you may have will depend on several factors in your household and Cancer treatment can affect your ability to work and pay your bills.’
Non-communicable diseases (NCDs) were previously considered to only affect high-income countries. They now account for a very large burden in terms of both mortality and morbidity in low- and middle-income countries (LMICs), although little is known about the impact these diseases have on households in these countries.[i] Cancer will continue to be the leading cause of morbidity and mortality worldwide. In my home country, the average Nigerian lives on less than $5.00 a day. This economic status is a sure way to reduce survival outcomes for most cancer patients. In Africa alone, there will be 156 million cases by 2030.
While I was undergoing treatment, a family friend in Nigeria was undergoing treatment as well. Her husband had sold everything to ensure her survival. Funds ran out. She did not make it. If you are fortunate to have a rich extended family member, your chance of survival increases. The “rich family member” option is not available to everyone. For others, the only option is hope or religion while praying for a miracle. These survival methods leave much to be desired. For developing countries, the cancer burden will be greater and Low Income Countries (LICs) do not have the luxury to be silent on the cancer epidemic.
When will cancer care become affordable? Cancer is no longer “the rich man’s disease”. It affects the young, the old, the male, the female, the rich, the poor. No one should come out bankrupt because of ill health. If health is wealth, no disease should burn holes in our life savings because we dare to want to live.
[i] Kankeu, H.T., Saksena, P., Xu, K. et al. The financial burden from non-communicable diseases in low- and middle-income countries: a literature review. Health Res Policy Sys 11, 31 (2013) doi:10.1186/1478-4505-11-31