My sister Maggie’s body attacks itself.
In 2010, she went to the eye doctor for difficulties she was having with her vision. She thought she needed a new glasses prescription. Instead, she was admitted to the emergency room because the ophthalmologist thought she was having a stroke or a brain tumor.
Many appointments and tests and anxious weeks later, she was diagnosed with multiple sclerosis (MS). MS is an autoimmune disease in which the body attacks the membrane around its own nerve fibers, causing scar tissue. A typical diagnosis requires two to three lesions on the brain; my sister’s brain had eleven. Because MS attacks the central nervous system, symptoms vary widely, ranging from fatigue and vision problems to seizures and paralysis. The worst part about MS is its unpredictability; one day my sister can seem healthy and the next day she can be overwhelmed with nerve pains, muscle spasms, and immobility.
At the time of her diagnosis, my sister was a 25-year-old stay-at-home mom to her 3-year-old daughter. Her husband’s insurance covered her then. But within a year of her diagnosis, they filed for divorce.
This is not uncommon for women diagnosed with serious illnesses. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is seven times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men.
After my sister’s diagnosis, her husband withdrew from the family. He engaged in addictive and destructive behaviors. That left my sister in a position where her access to health care was tied to a marriage that was not good for her or her daughter.
The Affordable Care Act, a.k.a. Obamacare, made it possible for her to live as a single mom with a chronic illness.
It qualified her for Medicaid coverage in Montana. It ensured that she would not be discriminated against in the health care market because she had a pre-existing condition. And it let her choose which treatment plan would be right for her and her body.
For six years, she experimented with different medications, starting with the cheaper ones (which cost $1,000-$3,000 a month). Her symptoms did not improve: Sometimes she relapsed, sometimes she got sicker, and sometimes she had to take drugs to deal with symptoms caused by other drugs. Still, she felt it was worth it to try to slow the progression of the disease.
It would cost her $65,000 a year without insurance.Last year, she found a treatment that works: It’s called Rituxan and it would cost her $65,000 a year without insurance. It’s part of a chemotherapy treatment she does every few months. It leaves her feeling sick and unable to work for a few days, but it works.
Last spring, Maggie graduated from Montana State with a degree in social work. She recently got a part-time job at an assisted living facility, which is funded in part by Medicaid.
It’s a good fit for her, because full-time work would be incredibly difficult with both her MS and her current treatment plan. It’s also a good fit for her because Maggie is one of the most caring people I know. She works with some of the most marginalized people in our society—elderly individuals, people with mental illness, those with severe disabilities—all unable to work or care for themselves.
The Congressional Republican health care plan could change all of that.
Under their plan, my sister could lose Medicaid because her part-time, low-wage income would disqualify her.
Under their plan, my sister could lose coverage for Rituxan, the only treatment that has worked for her so far.
Under their plan, my sister’s pre-existing condition could be used as justification to raise costs on her medical insurance.
Under their plan, my sister’s mobility and opportunity would be more limited by her economic insecurity than they are by her MS.
This is what it means to be uninsured. It means you cannot live safely and comfortably in your own body.
It is excruciating to have to determine the trade-offs your family can make to maintain your sister’s health care. It is even worse to make those choices, knowing they would become worse under all the new iterations of the conservatives’ health care plan. But the true hell is having to have to do it all in public: To have to write articles like this with personal testimonies, create heartbreaking GoFundMe campaigns, share that video of Jimmy Kimmel talking about his baby with tears in his eyes, in the hopes that they go viral. Maybe, if one of them is sympathetic enough, someone will look my sister in the eyes and decide her pain, and her life, should be taken seriously.
At the very least, today, I will be calling undecided senators in Congress so that they can understand the impact of their vote. But let it be known that it’s only one among hundreds of efforts my family, like so many others, undertake to get access to health care for the people we love.