Last year, keeping me alive cost $141,257. But Republicans want to stop paying

Medicaid is the only thing standing between millions of Americans and death, but it doesn't have to be this way. 

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My prescription for rifaxamin, an antibiotic, costs Medicaid $4,315 per month in the United States. Medicaid – arguably the closest thing the US has to the NHS – is keeping millions alive, including me. Without this staggeringly expensive drug to help control the symptoms associated with my Inflammatory Bowel Disease (IBD), I would be left with constant, crippling, and incredibly painful diarrhoea. Malnutrition and dehydration would force my doctors to surgically implant a port in my chest and put me on a nightly intravenous infusion of saline and nutrients. I’d spend eight hours hooked up to a whirring infusion pump. For five hungry months in 2015, instead of eating food IV nutrition was pumped into me every night – the profoundly unpleasant experience was also ridiculously expensive, costing up to $64,000 a month.

Like most people, I don’t have thousands of dollars to spend on medication. Instead, I rely on Medicaid, which is a government-funded social health insurance program for low-income Americans. I qualify for Medicaid because I’m disabled and my government disability benefit – the entire amount I’m expected to survive on – is only $750 a month, well under the Medicaid eligibility cutoff. Meanwhile, the US government considers anyone living on less than $1,011 a month to be living in poverty. Against the crushing backdrop of that inhumane, sub-poverty disability allowance, without Medicaid I’d have no hope of affording the medicines that keep me from an agonisingly painful and entirely preventable death.  

And in the land of serious chronic illness, rarely do patients escape with just one prescription. Every 28 days I inject Cimzia, a biologic medicine, into my thigh at a cost of $3,888 per dose. That yearly tab of $50,544 exceeds the median personal income in the US by almost twenty thousand dollars.

And it isn’t that I’m some sort of black swan outlier. A newly published study in the Journal of the American Medical Association (JAMA) concludes that the US spends “approximately twice as much as other high-income countries on medical care”. These peer-reviewed findings in an influential journal confirm that my experience is all too common and are useful in advancing the cost of care discussion, but not as immediately useful to me as Cimzia.

Cimzia helps control my IBD by slowing the rate at which my immune system shreds my small intestine. Without effective treatment, my small intestine becomes inflamed and ulcerated, leading to the formation of inflexible scar tissue. Over time, the bowel progressively narrows until food can no longer pass through. The resulting intestinal obstruction is a potentially life-threatening emergency for which I’ve been hospitalised six or seven times over the course of my life. Eventually, the only option is to surgically cut out the diseased portion of intestine. Hopefully, Cimzia calms the inflammation effectively enough that we don’t have to cut any more of my small bowel out of me. If Cimzia does fail, Medicaid will cover the surgery. But only if Medicaid still exists.

The Republican party has set about dismantling Medicaid, which has provided health care for some of America’s most vulnerable populations since 1965. Trump’s proposed budgets would make disastrous cuts to the health care program. And, with the encouragement and cooperation of the Trump administration, at least 10 GOP-governed states are moving to impose punishing and unprecedented requirements on the people it covers.

Lose your job? These states will exclude you from their Medicaid programme. Too poor to pay your newly increased health insurance premium? Same. Too sick to turn in your eligibility assessment paperwork on time? You’ll be punished with loss of coverage for six months. Their strategy is to create a bureaucracy so confusing, demanding, and hostile that hundreds of thousands of people have no hope of complying with its requirements. I trained as a health care lawyer, yet even I wouldn’t be able to keep Medicaid coverage if I lived in a state with these rules. During an IBD flare, no matter how motivated I am, or how much legal experience I have, I’m simply much too ill to navigate complicated eligibility assessment paperwork.

As a disabled, chronically-ill patient struggling to survive on $9,000 a year, without Medicaid I wouldn’t be able to access the medications that keep me alive, to say nothing of the brilliant clinicians who prescribe them. I simply could not afford both private health insurance and food. And the $141,257 Medicaid paid for my medications in 2017 would be utterly beyond my reach.

Ultimately, no matter who pays the bill, my health care costs too much. Republicans argue the answer is to cover fewer people. But the JAMA study tells a different story: it's not too many people, it's uncontrolled prices. The authors report US per capita health care spending was $9,403 in 2016, while in the UK it was $3,377. Medication bills on their own add up. US per capita spending on prescription medications was $1,443 in 2015 versus $779 in the UK. And yet, even after nearly a decade of Tory austerity that threatens its future, the NHS outperforms the US health care system in JAMA's analysis.

The researchers also show the folly of keeping that American system lurching along: they found the US spends significantly more on “governance and administration, which includes activities relating to planning, regulating, and managing health systems and services” than the UK. Sadly, this is hardly a surprise to anyone who has tried to pick an American health insurance plan, fought gigantic corporate middlemen to get a prescription paid for, or had the misfortune of dealing with debt collectors from a US hospital. Unless those who wish to privatise the NHS succeed, it’s unlikely the UK will overtake the US in the league tables of percentage of doctors who say they spend “a lot of time on paperwork or disputes related to medical bills” – that’s 16 per cent of US doctors compared to 0 per cent of their UK colleagues.

Instead of asking tough questions about why Big Pharma is allowed to charge Medicaid more than $8,000 a month for just two of my medications, Republicans are designing a labyrinth of deliberately complicated forms, taking coverage away from the unemployed, and demanding premium payments for Medicaid from some of the very poorest Americans. They don’t seem to mind that those new layers of bureaucracy will drive up the program’s historically low administrative costs. After all, they’ll succeed in lowering the number of people covered by Medicaid. But at what price? Taking health care away from patients with serious chronic illnesses will kill some of the sickest and most vulnerable.

The solution to high health care costs cannot be to kill the most vulnerable people in America, people like me, by depriving us of the health care that keeps us alive.

Matthew Cortland is an attorney and campaigner for disability and patient rights.