“I’m wasting away. I’ve lost fifty pounds in the last year because I have no appetite. Every time I eat something, my stomach gets twisted into knots and I throw up,” Patricia tells me. Medically, she doesn’t need to be in the hospital, but this is a “social admission” — a patient that can’t get connected to the proper care on the outside because of the complex health care system or a lack of money to pay for their care. I’m seeing it more and more in the US.
“The stomach issues are from your untreated lupus. Your high blood pressure is complicating things and the lupus will ultimately destroy your kidneys if they are left untreated,” I say in my scariest doctor voice. Patients can choose to do as they please with their health, but I am obligated to educate them so that they can make informed decisions. I always tell the truth and give the patient the necessary information, but the manner of delivery differs, depending on the situation and the patient. Sometimes, I am soft and speak in a soothing voice, gently stroking their damaged psyche while I caress their hand and nod in empathy for their plight. Other times, I am the stern father, warning them in a deep voice about the impending doom that will accompany their non-compliance with medication regimens. The educational dialogue occasionally activates multiple personas, ranging from Freudian counselor (Why do you think that you don’t take your medicines? Tell me about your mother.), to motivational speaker (You can do it! Go team!), to overly zealous sex educator (Your genitals will fall off if you have sex!).
Regardless of my delivery, I keep getting the same response from patients: I can’t afford my medications.
“Do you qualify for Medicaid?” I asked a few patients when I first moved to Florida, ignorant to the fact that Florida’s criteria for the state-sponsored insurance for the poor are much stricter than in the Northeast.
“When I was working, I didn’t qualify for Medicaid and since my employer didn’t offer insurance, I couldn’t afford medical care.” She was trapped — she couldn’t afford health insurance while working, but if unemployed she couldn’t live off of disability checks even though she would have Medicaid insurance. “So I took a leave of absence from work to apply for Medicaid and now that I have it, I’m going back to work. I could sit at home and collect disability, but I gotta pay for my daughter,” Patricia proudly proclaims. “I need to be here another twenty years at least.” She’ll have Florida Medicaid until her income passes the threshold, and then they’ll drop her off the rolls again.
Patients on Medicaid in wealthier states like New York and Massachusetts can get most of their medications for a few dollars a month. For patients whose illness put them on the brink of disability, Medicaid pays for a nurse to visit them at home monthly and even pays for a home health aide — someone to cook, clean and shop for them, while also reminding them to take their medications. Both the visiting nurse and home health aide programs have proven to reduce the number and severity of hospitalizations and, perhaps most importantly, actually save the state money as a result. Conservatives and liberals should be able to come together and develop cost-reducing programs that improve the health of the population, but I’m not holding my breath.
Back in Florida, another patient’s husband is slowly dying and she tells me that they are running out of lifetime Medicare coverage (federally-sponsored insurance for the elderly). I reassure her that Medicare doesn’t run out and that he would always be cared for. After speaking with the social worker, I learn that Medicare does in fact stop paying after a certain number of ‘hospital days,’ which are treated as commodity, as if the patient has a choice to consume hospital days or not.
“What will I do when his allotment of hospitalized days run out?” the exasperated patient asks.
“You do what many of my other patients do. Take the bill, crumple it into a ball and throw it in the garbage.” Welcome to America, I say to myself. I think back to the $2500 emergency room bill that I racked up in four hours as an uninsured medical student in 2005. I offered to pay the price that insurance companies would have given to the hospital for the stay (about $800) but was denied any price reduction. Three ignored phone calls from a collection agency, a huge hit to my credit and I was free. Here I am now, a doctor paid from the broken health care system, advocating for the medical equivalent of the dine-and-dash to an elderly woman with a chronically-ill husband.
In terms of failing to provide poor citizens affordable health care, Florida is similar to Haiti, and probably worse than Rwanda. Patients in Haiti typically have to pay for all medical services up front, including the doctor’s visit. If the doctor orders tests, they pay for those and then pay again to discuss results. When the doctor prescribes medications, patients often pick and choose which drugs they can pay for. Unfortunately, patients will often choose vitamins over antibiotics or diabetes medications.
For larger surgeries or treatments, they may save for a month or two, asking for help from extended family in the meantime. An illness can therefore not only bankrupt the patient, but also an entire extended family. For the working poor in Florida, all of the out of pocket expenses listed above can add up as well, causing bankruptcy or massive debt.
In contrast, Rwanda has a national health insurance plan which might not meet the high standards of the American population but which guarantees a basic level of access for all. The annual premium is only $7 for the lowest income category, but patients must pay ten percent of any hospital bill or medication cost. For the most part the system works well, although there are still scores of patients denied emergency care in the public hospitals because a nurse determines that they wouldn’t meet their financial obligation.
The truly poor have difficulty getting care wherever they are. In both Rwanda and Haiti (and every developing country that I’ve worked in), patients who are admitted to the hospital and given emergency care won’t be discharged until they pay the bill in full. That often leads to a bizarre, pseudo-imprisonment where the patient continues to sleep in the hospital but is not evaluated by the doctors or nurses. The IV is left in place to prevent them from running out on the bill in the dark of night. Since they’re not quite discharged, they may not have purchased their medication and often go for three or four days without taking their prescriptions. Patients can actually get sicker, relapsing from the illness while located in the hospital, but receiving no treatment. They also occupy a bed for days, a precious commodity in rural Rwanda, where we frequently had nearly fifty patients sleeping in forty beds.
In Florida and Haiti, medical bills are the leading cause of personal and family bankruptcy. Patients, especially the chronically ill, don’t choose to get sick. They may choose between purchasing medications and paying rent, and seeing a doctor or buying their children clothes, but they certainly don’t choose illness over health. I’m frustrated with this system that demands that people work but doesn’t help them to stay healthy. I’m ready to leave Florida to go back to Haiti, where, even if patients are denied care for a lack of ability to pay, at least the medical care is rationally priced.
Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.