Very few words in the English language—or any language—evoke as strong as an emotional response as the word “cancer.” When a patient and their family leave my examining room for the first time, they are overwhelmed with the plethora of information they have just received. The majority of the discussion is focused on the potential risks and benefits of treatment options that are available. Fortunately, advances in cancer research have led to effective treatments that are prolonging patients’ lives and improving symptoms.
However, often neglected during the conversation is how are these drugs will be paid for. We are under the assumption that the insurance company, the patient, or a patient advocate group will find a way to foot the bill, regardless of the cost. This current assumption does not always guarantee payment, and I learned from one patient that we cannot underestimate the financial impact of cancer care.
I had met this patient during one of my weekends on call. Life had been turbulent for him recently and he was attributing his recent weight loss, cough, and shortness of breath to stress. He had just gone through a bitter divorce and had lost his job as a computer engineer due to downsizing. To add to his burden, he also found out that his father’s congestive heart failure was now entering the terminal stages. Whether it was kismet or chance, he ended up in our emergency room late one evening after a car accident. He was working as an Uber driver when he was rear-ended and suffered severe trauma to his ribs.
An oncologist is rarely helpful in the trauma bay of the emergency room. This patient, however, needed my help after his CT scan revealed not only broken ribs but also numerous lung masses, liver masses, and lymph nodes, suggesting an aggressive cancer. A biopsy was performed in the hospital which confirmed our initial fears. He was diagnosed with stage IV lung cancer and was scheduled to follow up with me 1 week after being discharged from the hospital.
Two days prior to the patient’s visit, I received a call from one of our pathologists with the news that his cancer harbored a unique mutation. Based on this mutation, he was eligible to start a new targeted therapy that acts like a smart bomb—destroying cancer cells and sparing normal cells from toxic effects. Dramatic responses were being seen with this drug, even outperforming standard chemotherapy.
Knowing that time was of the essence, I was proactive and worked with my nurse to get the drug approved for my patient. The patient showed up and we talked and I listened. I focused on the promise of this new drug, yet all he was concerned about was his emergency room bill, the facility fee for my clinic, and the costs of future visits and scans. He was letting me know his fears, yet my focus was on this new magic pill. This was, unfortunately, a foreshadowing of the future visits.
We worked with a specialty pharmacy, a patient assistance program, our social worker, and his insurance plan to gain access to the drug. The initial cost was an astounding $2,500 a month. We used all our resources and were successful in lowering the co-pay to $250 a month. The patient did not express any concern about the co-pay and was anxious to start the drug. Within a week the specialty pharmacy was set to mail the drug and I was proud of all the hurdles we had overcome. I set up an appointment in 2 weeks and prepped him about potential side effects. Unfortunately, 2 weeks elapsed and the patient never showed up. The hope and optimism I once had for the patient was disappearing.
Days became weeks and we never heard from the patient. We called multiple times, left messages with family members, and sent multiple certified letters, but the patient never responded. The drug was never delivered and it seemed the patient had packed his bags and left the area. It was frustrating to know that I had a potential drug that had been shown to alter the lives of patients with metastatic lung cancer, yet could not find the person who needed it. Patients dictate their own fate, but I felt that I had failed my duty as an advocate for the patient. I spent much time second-guessing and re-hashing in my mind the one visit we had and where I went wrong. I would end each clinic day hoping to hear from him.
Four weeks later, my wish came true, yet it was not exactly as I had hoped. I had received a call from a nearby emergency room. My patient presented with headaches and worsening chest pain and was found to have progressive lung cancer which now spread in the brain. We arranged follow-up and this time he showed up. This time, I listened and finally heard the concerns of my patient. The burden of taking care of his father and not having any resources or family left him with no option. He was too proud to admit help and moved out to an apartment and had to sell his house. He felt he was letting us down by not paying his co-pay and that’s why he never answered our calls. He knew that without the drug, the cancer would continue to grow. He was asking for help now, and it was my job to listen and come up with a plan for the patient to treat his cancer and his life situation.
Empathy is defined as “the psychological identification with our experiencing of the feelings, thoughts, or attitudes of another.” Improving our empathy towards our patients is a constant struggle and there is much work that doctors can do to improve this skill. I learned this with this interaction and focused on helping my patient. We got help for his father, got a patient advocacy group to cover his co-pay, and got help with arranging discounted travel to the clinic. We had a setback initially, yet with treatment his tumor was shrinking and he was feeling better. He also started volunteering at our clinic, and I have noticed a new sense of confidence and contentment in his spirit.
Writing a prescription is the easiest part of we do in clinic. The harder part is truly understanding the financial burden a cancer diagnosis inflicts on patients and their families.
We document pain scores on every patient before each visit. I submit that efforts should be made to add financial burden as another score that is discussed during each visit. Don’t be afraid to ask your patient about financial issues and start looking at the true value of each regimen or chemotherapy you prescribe. It is incumbent upon doctors, pharmaceutical companies, insurance companies, and hospitals to step up to the plate in addressing the rising cost of taking care of patients with cancer. I learned from this man that we can’t be afraid to talk to our patients about the cost of care and financial burdens they are suffering. It can make the difference between paying for rent or paying for their chemotherapy.
Originally published on Cancer Doc in Evolution; reprinted with permission.