How Being a Writer Helped Me Navigate the American Health Insurance System—and Get My Hands on “Liquid Gold”
On December 22nd, 2015, after a couple years of unexplained and fleeting on-and-off symptoms, I woke up with a fever, my joints aflame, the air on my skin feeling like shards of glass. Over the next few months my life.
In December 2015, the author experienced severe symptoms including fever, joint pain, brain fog, and headaches that made reading difficult. These symptoms forced them to quit their job teaching fiction writing in prison and abandon creative work. Over months, their condition worsened, requiring visits to multiple healthcare providers such as medical doctors, acupuncturists, lymphatic masseuses, Chinese medicine doctors, and a psychic. The author gained significant weight due to high-dose steroids and opioid-induced sugar cravings, becoming unrecognizable to others while their body constantly signaled distress. Despite this, they felt invisible in the world, struggling to understand what their body needed.
The author was diagnosed with Lyme disease and babesiosis, two tick-borne illnesses. After a year of treatment, some symptoms like 'air hunger'—a feeling of suffocation despite normal breathing—improved, but overall health declined. They contracted Clostridioides difficile (c. Difficile), a life-threatening intestinal infection likely acquired in a hospital, and hepatitis B from an accidental needle stick by a nurse. Hospitals were identified as dangerous places, particularly for immunocompromised individuals. The author and their husband relocated from New York’s Hudson Valley to New York City to access better medical care at major teaching hospitals.
At a New York teaching hospital, the author was diagnosed with autonomic small fiber neuropathy, a condition causing dysfunctions in blood pressure, heart rate, digestion, temperature regulation, and other involuntary bodily functions. They were prescribed IVIG (intravenous immune globulin), a treatment involving infusions of immune proteins from donor blood to temper the body’s autoimmune response attacking nerves. IVIG was later used to bolster immunity after medications for cancer wiped out large parts of their immune system. Each IVIG infusion cost between $9,000 and $10,000, with regular recipients like the author paying an average of $35,000 per month.
The author’s neurologist fought their insurance company for nearly a year to approve IVIG, engaging in multiple appeals and 'peer-to-peers'—discussions between the author’s specialist doctor and an insurance-employed doctor (often in unrelated specialties) to argue for treatment necessity. The author’s ability to write and communicate effectively played a crucial role in navigating the healthcare system. Their literacy, education, and advocacy skills, combined with privileges like whiteness and financial support from family, helped them access treatment, communicate symptoms clearly to doctors, and challenge misunderstandings. However, the author acknowledged that many patients lack these advantages and struggle to articulate their suffering.
The author used writing skills honed through education and a previous job writing scripts for nursing students to prepare concise, detailed medical documents for doctors. They studied medical terminology and communicated symptoms, diagnoses, medications, and pain scales in a structured way, sometimes handing doctors pre-written sheets during appointments. Their rheumatologist frequently praised their writing and showed personal interest in their creative work, fostering a collaborative relationship. The author noted that while some doctors are compassionate regardless of a patient’s communication skills, many patients—due to illness, lack of education, or social support—cannot articulate their needs effectively, leading to inadequate care.
The author, a woman with severe mental illness, faced skepticism from some doctors who misattributed her symptoms to psychiatric conditions like bipolar disorder or PTSD. Despite this, they generally received better care due to their ability to communicate and advocate. The hierarchical structure of hospitals, particularly university hospitals, was described as daunting, making it difficult for patients to challenge doctors’ opinions. The author emphasized that their care was not universally accessible and that discrepancies in treatment quality highlighted systemic inequities in healthcare.
The author’s background—including education, financial support, and identity factors like whiteness and cisgender identity—empowered them to navigate the healthcare system effectively. They acknowledged that their ability to access 'liquid gold' (IVIG) was not solely due to their efforts but was enabled by the suffering and deaths of others who could not advocate for themselves. In a final attempt to secure insurance approval for IVIG, an infusion pharmacy representative told an insurance doctor that the author was an author poised to write an exposé for the *New York Times* about the insurer’s denial of life-saving treatment. This reference to a potential public critique, combined with legal cases in California against the same insurer, contributed to the author’s eventual approval for treatment.
