GOP Wrong about Obamacare Again: How the Law Changed Life with Epilepsy
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People with epilepsy have an extra reason to love Valentine’s Day: the eponymous saint is also one of many Catholic saints associated with epilepsy. And for those who live with this relatively common seizure disorder, any spare love is likely very welcome.
I was diagnosed with epilepsy at 14, after I had a seizure in my junior high school cafeteria. It was sort of a confluence of horrible realities, the stuff of teenage nightmares: I was awkward, dorky, mousy and unsure of myself, and the entire student body got to see me shake and flop on the linoleum tile like a dying fish in a pleated skirt.
My mom didn’t make me go back to school for a whole week. At the time I thought she sympathized with my humiliation (which followed me until my high school graduation), but looking back I realize she was terrified: All my life, I had been perfectly healthy. The seizure came utterly out of nowhere, and seemed to disappear back into that same abyss. For months, nobody seemed to be able to tell my family quite what was wrong with me. We settled back into a strange unease, until later that winter, when I had another seizure – this time, at home.
For those unaccustomed to neurological illness, navigating the healthcare system is nightmarish. A series of increasingly specialized doctors is required: not only a neurologist, but a pediatric neurologist, and not only a pediatric neurologist, but a pediatric epileptologist. Finally the brain scans showed that I have a disease known as juvenile myoclonic epilepsy. It is incurable and lifelong, and I will always take medication to treat my seizures.
This bothered me for a while – especially when I was in the public school system and in the bad habit of worrying about what people thought of my muscle spasms – and so I did what many people who suffer do: I looked for meaning in my misfortune. Even Saint Paul said he lost everything and counted it as a good riddance so long as through that loss he could find and serve Christ. And I, too, turned to service to find the good in my diagnosis.
As a sophomore in college, I worked for the national office of the Epilepsy Foundation, a nonprofit devoted to furthering the quality of life of people with epilepsy. It was there that I became aware of a pertinent and disturbing reality of this disease: It not only disproportionately occurs in the poor, but also inflicts greater suffering upon them than on their wealthy counterparts.
In 2002, researchers in the United Kingdom found that the poorest quintile of the population were more than twice as likely to develop epilepsy as those in the wealthiest quintile. Researchers suspect the disproportionate distribution of poor persons with epilepsy has to do with a multitude of factors, including the harsh conditions under which poor people grow up, the likelihood of poorer people delaying treatment compared to wealthier people, and the reduced likelihood of poorer people to access preventive care. And that research was conducted in the United Kingdom, where healthcare coverage is universal. In the United States, matters are even worse.
Supposing a poor person with epilepsy in the United States does manage to see a doctor and determines he or she does have epilepsy, consistently affording medication can be tremendously difficult. Prices of anti-seizure drugs have skyrocketed in recent years, with the Epilepsy Foundation of North Carolina reporting that “epilepsy medications are expensive, often costing more than $1,000 a month. For those not covered by insurance or other programs, these costs are prohibitive. Most affected are the working poor.” Some branches of the Epilepsy Foundation and other charities targeted at helping people with epilepsy do try to maintain funds for those who cannot afford their medications – but these funds are spotty, subject to change, and limited.