Travel & Lifestyle: Government Shutdown: Chronically Ill And Disabled Americans

The Boy Scouts collected food this past weekend for needy families in my Boston-area suburb, while my church raised funds for the local food pantry.

In both cases, my family donated more than usual, given that President Donald Trump had ordered federal food aid for the poor, elderly and disabled stopped due to the government shutdown. As news outlets and social media feeds became populated with images of people in food lines — including furloughed federal employees and those working without pay — awareness about the acute need for such donations was high.

The historic government shutdown had stretched into its second month. Senate Democrats vowed they’d vote to open the government if and only if their Republican colleagues agreed to reinstate federal tax credits, which help 22 million Americans pay for their Affordable Care Act health insurance plans. Without these subsidies, ACA monthly insurance premium payments would “more than double,” according to KFF, a health policy organization. As a result of the projected price increases, an estimated 4.8 million people would be unable to afford their health insurance, the think tank the Urban Institute said.

Then, on Sunday night, eight senators who caucus with the Democrats agreed to reopen the federal government after the Senate Republican leadership said they’d hold a vote next month on the restoration of ACA tax credits, not that they’d actually restore them. It’s a proposal that, if put to a floor vote in the Senate and House, will likely fail, political observers predict.

To many Americans who were counting on Senate Democrats to fight for them — like the over 7 million who took to American streets for the latest “No Kings” rallies and the millions of voters who gave Democrats coast-to-coast victories last week — this was a betrayal. To disabled Americans, particularly those who live with incurable, chronic illnesses, it was more than that. It was a statement that their lives are simply a bargaining chip, eclipsed by disturbing photos of long food pantry lines and concerns over GOP pressure tactics.

Based on Republican officials’ open hostility toward the ACA, their decision this summer to curtail federal subsidies that enable millions of families to afford stable health care was unsurprising.

During Trump’s first term, I outed myself as a multiple sclerosis patient because I feared I’d become uninsurable if ACA protections from being discriminated against due to preexisting conditions were eliminated. Only a few years into my MS journey, I was as stunned by the extraordinary cost of the prescription medication that blunted the progression of the neurological disease of the central nervous system as I was by the costs associated with my twice-yearly neurological visits, annual MRIs and other medical appointments I needed to manage my myriad symptoms. When the late Republican Sen. John McCain famously gave a thumbs-down and killed the ACA repeal effort in 2017, I, along with others with preexisting health conditions, exhaled.

Flash-forward eight years, and those in the chronic illness community are worried anew. An MS patient I interviewed for my recent book, “Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients,” took to social media to detail her fears about the elimination of ACA subsidies.

“The anxiety that I have knowing I could lose my healthcare is through the roof,” Sarah Quezada, a California-based patient advocate for the National Multiple Sclerosis Society, posted online. “As a person living with MS, I NEED access to affordable healthcare. I already make healthcare decisions based on if I can afford it.”

Saying she takes a dozen medications to manage her MS and maintain her quality of life, Quezada wrote in October: “I book my yearly MRI in Jan so I knock out my deductible early in the year. I charge it to a credit card because I don’t have any extra money after the holidays. Once I fill my first RX of my MS med, it pushes me into the catastrophic coverage stage because it’s so expensive.”

Quezada’s concerns about the elimination of ACA tax credits were echoed on social media by people who said they felt as though their lives had been rendered politically expendable.

“Y’all are talking about who needs to be primaried and I’m over here watching large parts of the disability community discuss how they’re going to prepare and try to enjoy the next two months before they can no longer afford healthcare,” a post on the Threads account boricua.polonia said after the Senate Democrats announced their decision.

The images of breadlines devastate anyone with a beating heart. But we can donate food and cash to those whose federal food aid was cruelly cut or whose government paychecks are withheld during a government shutdown. What we can’t do is donate health care and prescription medicine to those who lose ACA subsidies.

I wonder if the eight Democratic-aligned senators who voted to reopen the government based on the mere promise of a vote on ACA subsidies — the same lawmakers who this summer passionately waxed on about the dire consequences to Americans’ health if the One Big Beautiful Bill passed — would be willing to leave the fate of their loved ones’ health to the whims of Republicans who for years have aspired to plunge a dagger through the ACA. Would they be willing to risk the irreparable worsening of a loved one’s chronic illness (like the loss of mobility, of manual dexterity, of vision, all MS symptoms) on the pledge of good-faith negotiations with a party whose members have demonstrated they are faithless?

Those eight senators apparently believe sacrificing their original goal of restoring the ACA tax credits is a better alternative than continuing the prolonged shutdown fight as the administration cuts food aid and curtails airline traffic in advance of the holiday travel period. This is unfathomably disappointing. Americans, especially those with precarious health situations, deserve better.

Meredith O’Brien is a Boston-area author of six books, including “Uncomfortably Numb: A Memoir about the Life-Altering Diagnosis of Multiple Sclerosis.” She’s a volunteer patient advocate for the National MS Society and serves as a trustee for her local chapter. A former journalist, Meredith teaches writing and journalism at Massachusetts universities and is currently working on a book about a year in the life of a millennial Unitarian Universalist minister.