In 2011 my sister in the US discovered a lump in her breast. She was 37, and initially it was quite reasonable to imagine it was a cyst, that it would likely go away. But it worried her, and then it grew. She worked part-time for a small business that did not provide health insurance to employees, and lived month to month with little excess money to cover unexpected costs. She couldn’t afford to see a doctor unless it was absolutely necessary. People who work for bigger companies or who are financially better off could seek and receive care, but she couldn’t. What does that say about the value of her life to the society she is a part of?
She visited an organisation that provides access to women’s health care at low or no cost. Our mother paid the $120 bill, and after an exam my sister was encouraged to repeat the exam in another county, at an office that partners with a charity that covers referrals for further testing and diagnosis. She was referred to a male surgeon who downplayed her concerns: You’re breast feeding, I’m sure it’s a clogged milk duct, he said with no evidence. No need to biopsy, it has to come out anyway. She was referred to a charity clinic for surgery, only to discover that the next available appointment was in January. This was October. Because she had no physical wealth and couldn’t afford a second opinion, she was left without any real options. What does that say about the value of her life to the society she is a part of?
Over the weekend my sister started having pain in her arm pit and near her neck. The tender skin looked slightly swollen and our fears swelled with it. Something was happening, something was progressing. She spent time and energy and emotional strength trying to figure out what to do, how to be seen by a doctor. She could go to the ER, but they would have to refer her to a doctor for diagnosis anyway. Then she’d be billed for an emergency room visit in addition to the doctor’s fees. Where is the sense in that? After much internal conflict, she scheduled an appointment at a local clinic. An ultrasound and biopsy that would cost $6000 – discounted to $2000 if she could pay upfront. What does that say about the value of her life to the society she is a part of?
From London I spoke the numbers of my credit card to the woman at the other end of the phone as my sister sat near her in the lobby. The biopsy was performed. While performing the test, staff realised this was a more complex procedure that required an extensive biopsy into lymph nodes in addition to the main lump. My sister later received a bill for $12,000 due to the changed nature of the procedure. She spent time and energy and emotional strength trying to figure out whether this bill could be reduced or cancelled. Even with our contribution and a charitable discount, it was still beyond her means. Eventually the hospital agreed to waive the remaining fee…she got lucky. But how can a biopsy cost $12,000? Who can afford to pay that? What would she do if she didn’t have family to help her? (Would she be dead? She could be dead!) What does that say about the value of her life to the society she is a part of?
Once she was diagnosed, a patient advocate at the hospital helped my sister apply for assistance from a breast cancer organisation and later a hospital-based charity. The charities volunteered to pay for four months of toxic chemotherapy treatment. They agreed to pay for most of her cancer care, including the double mastectomy that was recommended because she carried a breast cancer gene mutation—she had a high risk of developing a second breast cancer in the still healthy breast. These charities were literally a lifesaver. My sister’s lifesaver. After she had the surgery, she received a bill from the hospital for the anaesthetist’s service and (this was a real surprise) the surgical removal of one breast. The charities couldn’t pay for anaesthesia. And the healthy breast wasn’t considered a part of her cancer treatment (!?!). What then should she have done? Waited for cancer to reappear and go through this process again? What does that say about the value of her life to the society she is a part of?
My sister has been cancer free for nearly ten years now. I hope that stays true. A good number of individuals in her life valued it enough to help make sure she had the best fighting chance. People who engaged her as an individual, a person, a human being of infinite value – someone worth protecting, someone who could just as easily be them. She still doesn’t receive health care through her work. She does receive Medicaid, government-assisted healthcare – when the system does not kick her off the rolls. This has happened repeatedly, many times across the years. It is always their mistake and is always corrected, eventually. But it means that she continues to weigh the risks and benefits of going to see a doctor. She is regularly put in a position to delay her own health care or that of her children. Nothing has changed there. And what does that continue to say about the value of her life to the society she is a part of?
I wrote this text in response to a series of questions from artist Susan Aldworth’s project “The Value of a Human”. I struggled with the question “How much do you think a person is worth?” until, in one quick flow, this essay poured out.