Khadijah Costley White’s sister was diagnosed with an incurable disease six years ago, and needs help with every aspect of daily life, including eating, bathing, shopping, and getting dressed. The Affordable Care Act helps her with none of that.
Last Friday, I woke up to a desperate text from my sister: “I am truly overwhelmed with this Obama Care—please help me!”
My stomach tightening, I decided to do some more research on the Affordable Care Act. But even as I opened my computer, I was filled with doubt. I was pretty sure that the ACA means nothing for my sister. And I didn’t want to be the one to tell her.
My sister is beautiful, smart, fun, generous, and hilarious. She has a singing voice that stirs souls and a fashion sense that would make even the First Lady jealous. She’s also chronically ill and permanently disabled. She was first diagnosed with lupus in early 2007 after a long illness. She had been working two jobs while attending college when she began suffering from mysterious symptoms. Exhaustion seemed normal considering her schedule, but the entire family became increasingly worried as deep red stains developed on her hands and feet and sores appeared in her nose and ears. Even the doctors seemed confused and dismissed her symptoms with laughable diagnoses. When one night she wept from the pain in her feet and hands, preventing her from being able to walk or even crawl upstairs to go to the bathroom, I convinced her to go to the hospital.
Lupus is an incurable immune disease that disproportionately affects black women, but we were determined to make it livable. We sought out support groups, bought books, and got her the doctors she needed. But soon she was tired all the time. She could no longer manage classes or even one job. After a second long hospital stay two years after her diagnosis, she was laid off. Her hair fell out, leaving large bald patches around the tender sores on her scalp.
She was 25 years old, chronically ill, with no health insurance, no source of income, and no options. Unlike most healthy people without insurance, my sister needed frequent access to both medicine and medical care. Charity services were too inconsistent and irregular to rely on—and applying for permanent disability would take at least two years.
I’ve studied social justice for years, but I was still shocked to discover that I lived in a country with such little regard for the sick. How could someone so ill be expected to manage so many doctors and appointments? How could someone on such a restrictive income be expected to purchase medicines that cost hundreds of dollars of month and to pay the Medicaid co-pays to see the specialists she needed? It seemed like the system wanted my sister to just die and go away.
So, in October 2009, we were both excited to join a group of young adults going to Washington D.C. to lobby during the early stages of the ACA development. They were called “Young Invincibles” and they promised a day of meeting with lawmakers on the hill, so that we could give input on the bill. There was even a photo op with then-House Speaker Nancy Pelosi, who gave a speech endorsing changes to health insurance coverage for young people.
But one moment that day stood out for both of us. In a meeting with a congressional staffer, I eagerly asked how the bill would deal with people suffering from chronic illnesses. I explained that people like my sister have to see the doctor more than others and can’t work, and wondered whether the law would provide any consideration to reducing financially onerous co-pays and exam requirements in such situations. The staffer looked taken aback.
People with chronic illnesses hadn’t even been discussed, she told us.
And that was when I knew this bill would do very little for my sweet sister, or for the millions of already ill and disabled Americans who were desperately clinging to the hope that this new law represented.
I waited all day to respond to my sister because I didn’t have much to say. While she finally receives Medicare and disability, she became ill at too young an age to qualify for a livable income. And she turned 26 two months after an ACA provision extending parental insurance coverage until age 26 went into full effect.
She’s in pain all the time, but is still expected to pay her bills, feed herself, see her doctors, purchase and regulate her medicine, adhere to a strict diet, and cover transportation to her medical appointments on a few hundred dollars a month that she gets from the federal Supplementary Security Income program (SSI). Sometimes, she’s so exhausted that she sleeps for 20 hours. My mom often finds her stretched out on the kitchen floor when she’s too tired to make it to her bed.
Stress is a key factor in lupus, aggravating the body and triggering flares. How ironic, then, that it’s her lack of medical support that makes her need it even more. My entire family tries to help her in various tasks, but we all work full-time jobs.
And the much lauded ACA seems to offer very little to change these circumstances. Well, except to scare my sick sister, who is constantly anxious when it comes to her healthcare. And, as I search around, I discover that it’s quite possible that she could lose what little services she has under the ACA. The bill doesn’t help with long-term care and it only provides prescription discounts for seniors. She is one of the many people who most need access to good medical care and she understands it the least. What of other severely disabled individuals? Especially those with little or no computer access, no family, or those who are unable to read? Do we care?
On the information site at Healthcare.gov, a question asking whether someone has coverage only leaves space for two possible options—either the person doesn’t have it or is covered by an employer. Where does my sister fit? On the Medicare website, I find out that very little has changed for those who receive it. There are new “preventative services,” but nothing else that helps enhance the quality of life for those with a permanent disability.
My sister, who has yet to go into remission, needs to see doctors two to three times a week. A promised “annual wellness” visit is almost absurd in how out of touch it is for most people on Medicare. She’s not allowed to take her allotted healthcare funds and enter the newly minted insurance “exchanges” to shop around for competitive coverage either (though there is a small chance she could now find a slot at an experimental practice that sends a primary care physician to our home, if she’s willing to give up the doctor who has managed her care for the last several years).
I’ve been hoping that the ACA would help strengthen Medicare, and possibly offer my sister access to much needed therapy, transportation for medical appointments, or home support for basic care—bathing, eating, shopping, and getting dressed. And it does none of that.
I could be wrong about the law (it is a lengthy document), but I don’t think so. Hopefully, the needs of permanently disabled or ill people will be better addressed as the bill rolls out. But if someone like my sister doesn’t understand how the law affects her, then the bill’s already failed in a major way.
Khadijah Costley White is a faculty member in the Department of Journalism and Media Studies at Rutgers University in New Brunswick. Find her on Twitter here.