I haven’t been able to get out of bed on my own in nearly two years—and I’m only 28 years old.
For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.
I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.
When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid healthcare program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance, anyway, and paid around $1,500 for the ride out-of-pocket.
Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.
It’s beyond unfortunate that my medical care has become a privilege costing me more than $1,200 a month. In the last year, I spent roughly $73,000 on my healthcare—more than double the annual income I made even when I was healthy and working full-time.
Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017, but now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. Not only is ME not going to get $15 million in government funding in 2017, in January the NIH said it will only allot $5 million, which is less than it received in 2016.
The amount is minuscule and shameful compared to the funds that the government has at its disposal. For the ME community, a substantial increase in government funding has been needed for decades. More funding would have an enormous impact. It would mean more research; more research would mean more biomarkers; more biomarkers would mean the potential for a diagnostic test, and these scientific breakthroughs would mean medical professionals would be able to better understand the disease, and therein lies the solution. Through this path there is potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME and relief to millions of patients. That would be real progress.
But this progress may never happen.
Before Donald Trump shocked the world by winning the 2016 Presidential election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.
If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.
The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need. What’s more, former House Speaker, John Boehner, who was one of the biggest opponents of the Act leading up to its enactment and subsequent roll out, recently said that Republicans will fall short of repealing and replacing it.
“They’re basically going to fix the flaws and put a more conservative box around it,” Boehner said, citing the Republican’s inability to agree on a replacement and further saying that “. . . if you pass repeal without replace, first, anything that happens is your fault.”
It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle. Because what happens next, for us, could be a matter of life or death.
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