Five years ago, my father started feeling a little bit off. The blues, we said, dismissing his fatigue and slurring speech and slight shuffle. It was all so unlike him – the life of our family’s party boat, the longest, loudest laugh, the strongest opinion, the silliest prank. Go back to school, we suggested, go traveling, try meditating. Instead, he went to the doctor. It was a natural response for the son of a doctor, and a former engineering student himself. Isolate the problem, identify it, solve it.
Five years, dozens of pills and fifteen specialists later, we can safely say that the medical system has failed him. My father is a healthcare orphan.
Three months ago, after fighting a near civil war, the House managed to pass a healthcare reform bill that might lead to one of the single greatest overhauls of social service in our country’s history. But even as the Obama administration limps off to face other proxy battles in the Left-Right war, my father and countless other patients will still be trapped in the nightmare of modern healthcare.
The word “healthcare” itself is deceptive. In his battle with illness, my father has encountered anything but actual care. For that, he has my mother, my brother and my husband and me, but certainly not the many doctors and therapists and health care professionals who have been paid to provide it.
His illness is confounding and exhausting, a degenerative neurological condition affecting how his brain communicates with his body, and over these past five years, it has stripped him of his speech, his handwriting, his balance and his coordination. It has crippled him with stiffness and mind-numbing fatigue, caused him to choke on his food, and altered his personality in dozens of ways. His illness has taken from him the things he loved most in life – travel and sports and conversation. And still, he is the easiest person to make laugh, the most optimistic person in our family about what the future will bring.
How are you so courageous, I asked him just this week? Because, he said, I have hope for a cure.
Because modern neurology relies on groupings of symptoms for diagnosis, and because my father’s symptoms don’t originate in one or another part of his brain, but rather from some kind of short-circuit in his brain’s network, he still has no diagnosis. And without a diagnosis, there can be no treatment and no cure. His many doctors and specialists can only tell him to come back every six months and pay them hundreds of dollars to receive more referrals to other specialists or more tests imaging his brain, assessing his vision and bladder and psychiatric function, monitoring his sleep. The family doctor, who tends to be available, is confounded by the illness and has no more patience for our emergencies and questions. The specialists are inaccessible and only interested in patients that advance one or another research study, in which there are no spots for people without a diagnosis.
Whatever indignities my father’s illness has subjected him to have only been compounded his experiences in the healthcare system. Two years into his journey through waiting rooms and pharmacopeia, one of the leading movement disorders specialists in the country told my upset father, who had started falling without warning, to “stop complaining and get yourself a cute cane.” Two years after that, after a week-long hospitalization and exhausting stint in a rehab facility (with a hearing impaired roommate who left his television blaring all night), an administrative employee with a home health care company called my father and told him that he was not “allowed” to leave his house to go to the theater with his wife because in order to receive the 24-hour care he needs, he had been officially classified as “homebound.”
Not to mention the hundreds of minor and major humiliations he’s had to endure, like being strapped to a gurney for hours after a fall while an on-call nurse finishes a bag of Fritos before calling a doctor to come check on him, or having a trained nurse ask him if he has any trouble “going pee pee and poo poo.”
All of this is expensive, but thankfully, my parents are savvy and bought a blue-chip long-term care policy before my father became ill. My mother also works full-time and has excellent health insurance coverage for her and her spouse through her employer. So, problem solved, right? Absolutely wrong.
The blue-chip long-term care policy, which my parents have already paid for, will only allow my mother to spend $240 a day on in-home care, or $10 an hour. Any professional nursing service charges between $20 and $30 an hour. They require documentation and paperwork for every claim, even a $50 walking stick. They held off reimbursing my mother for nearly one year after she began filing claims, racking up thousands of dollars until their “social workers” had investigated to prove that my father was really sick. My mother’s health insurance plan, in a bid to save money, requires that all prescriptions be filled remotely, by mailing in prescriptions and ordering refills on the telephone. Refills can only be ordered after a set number of days, but prescriptions can take anywhere from seven to, once, 18 business days to arrive. Express shipping costs extra. If my father has an emergency and needs a prescription right away, he has to pay out of pocket for the doctor to call the prescription in to the local pharmacy. My father has been hospitalized six times in the last three years, and each time, various doctors and specialists drop by for a few minutes at a time, charging hundreds of dollars for each visit. After his last hospitalization, the health insurance company sent an investigator to hound my mother like a debt collector, accusing her of committing fraud and leaving messages that came within a hair of actual threats.
Both the insurance company and the long-term care company place the burden of proof that my father is actually ill on my father, while the many doctors and specialists still resist giving my father a diagnosis.
And with the quality of his coverage, my father is one of the lucky ones.
I have no real answers to the central question of the latest healthcare reform debate, which is, who should pay for health insurance? But I know that the debate should focus a little less on this question and a lot more on how to care for the very sick in our society.
Kavitha Rajagopalan is a senior fellow at the World Policy Institute, where she writes and lectures widely on immigrant integration, global migration and the informal economy, and Muslim immigrant communities in the West. She is the author of “Muslims of Metropolis: The Stories of Three Immigrant Families in the West.”