Safety Net

The Senate Health Bill Could Fire the People Who Keep Me Alive

The last thing I ever expected was to be an employer, but that is exactly the situation in which I find myself. I don’t employ people as part of a business, or anything even remotely profitable. I employ caregivers who keep me alive.

Under the Senate’s latest health care bill, my caregivers are at risk of losing their jobs. And if they lose their jobs, my life will be at risk.

Six years ago, I was diagnosed with a multi-system disease—myalgic encephalomyelitis, or chronic fatigue syndrome—that inhibits my body’s metabolic system. Although the disease differs from person to person, my condition has been degenerative over the years; for more than a year starting in 2015, it left me unable to speak, eat, or lift my head higher than a pillow.

This is the type of physical debilitation that requires a caregiver.

I employ caregivers who keep me alive.

For the past two years I’ve been completely bedridden, and I’ve hired numerous caregivers to perform myriad tasks for me. They have administered my daily oral medications and flushed my IV with syringes full of saline and heparin. They bring me my toothbrush every morning, and they help me go to “the bathroom” by emptying a plastic urinal beside my bed. They help me bathe by placing a flattened inflatable bathtub on my bed, which I scoot onto so they can inflate it around my body. They fill the tub with water so I can clean myself, then they drain it, I towel off, and they deflate the tub so I can crawl out.

These tasks are essential to my health, and I depend on my caregivers to help me perform them. But the stark reality is that I simply couldn’t afford to employ caregivers without Medicaid.

I receive around 48 hours of paid caregiving every week through California’s In-Home Supportive Services (IHSS), which gets half its funding from the federal government. For the 48 hours a week they cumulatively work, my caregivers are paid California’s minimum wage: $10.50 per hour. Because I believe that is an unfair wage for such a demanding job, I supplement their pay as much as I can —usually an extra two dollars an hour.

Under the Senate health care bill, Medicaid would face massive cuts—up to $772 billion by 2026. Combined with the House budget, which was released earlier this week, those cuts would jump to $1.5 trillion. That would almost certainly cause dramatic reductions to caregiving services in California, as well as every other state in the country. But these cuts will not only impact patients; they will take a toll on the caregiving field and other industries related to health care.

“Caregiver” is an umbrella term that includes several job titles, such as personal care aides and home health aides. These positions account for millions of jobs, and past projections have estimated as much as 38 percent growth in some fields by 2024. But since Medicaid is the largest public payer of long-term caregiving services, the cuts outlined in the BCRA could end up eliminating their jobs, along with others in health care and the broader economy. The Center for American Progress has estimated that the House version of the health care bill—which is substantially similar to the Senate bill—would cost the American workforce 1.8 million jobs by 2022.

Each one of those jobs has dozens of lives attached to it and is part of a vital social equation that nobody should reduce. Not only are jobs and livelihoods at stake, but so is the health of millions of people. Cuts to vital services like Medicaid, Supplemental Security Income, and IHSS will tear down decades of efforts to protect and nurture the working poor, sick people, the elderly, and the disabled.

Instead of giving me the help I need to live and potentially improve my health enough that I can once again contribute to the economy, this bill would put my life in an incredibly vulnerable position. It would also take jobs away from health care professionals like my caregivers. This may be acceptable to some, but to the many millions of people whose fates hang in the balance, it’s entirely unacceptable.

 

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Media and Politics

Paul Ryan Doesn’t Like It When We’re Angry

Last week, Speaker of the House and all-around nice guy Paul Ryan (R-WI) released a video and a statement asking Americans to be more civil to one another. It was part of a push for legislation that Rep. Charlie Crist (D-FL) introduced a month ago to make July 12 a National Day of Civility. The bill, which was offered in response to the shooting that critically injured House Majority Whip Steve Scalise (R-LA) and three others, encourages Americans to “be more respectful and polite to others in daily life.”

On the one hand, I can’t think of anything more American than responding to a mass shooting with a bill that suggests that everyone should remember to say “please” and “thank you.” But on the other, Ryan’s plea that we all just calm down—that we not “base our arguments on emotion” and instead “have a great debate on ideas and principles”—feels like a willful misunderstanding of the stakes that this administration has created.

In the past six months, this administration has pushed hard to dismantle the health care system. It is rolling back financial and environmental regulations, undercutting public schools, and hacking away at the legal system. It has been actively hostile to immigrants, tried to defund Planned Parenthood, and responded to the police shootings of 547 Americans by suggesting that the officers “choked.” These aren’t “ideas and principles” that we can chat about while we wait for someone to tap the next keg. They’re people’s lives. These policies will be felt intensely, and immediately, by the people that Speaker Ryan governs. And as long as the stakes are this high, I—respectfully—decline to be polite.

Anger allows us to demand attention instead of just hoping for it.

Politeness is a luxury, and it’s one that most Americans cannot afford. Polite people can raise their hand and wait quietly, confident that they will be called on and have their voices heard. But most of us never get called on. So what Paul Ryan is seeing—what is bubbling to the surface in the absence of politeness—is anger. This administration’s policies are forcing people to fight for their lives, and we are really, really mad.

Our anger gives us power. Anger allows us to demand attention instead of just hoping for it, which makes it one of the best vehicles that citizens have to exercise their rights in a representative democracy. Anger brings millions of Americans to a march in the middle of winter, it fuels them as they climb to the top of a 270-foot crane, it keeps them on-message even when they are under arrest and being dragged away without their wheelchairs.

Our anger makes Paul Ryan uncomfortable, so he is framing it as if we are out of control. It’s a centuries-old tactic to dismiss and discredit our rage. We saw it when Sen. Elizabeth Warren (D-MA) was silenced for reading a letter, and when Sen. Kamala Harris (D-CA) was told her questions were too aggressive. We see it when a protest is called a riot, and when a politician refuses to engage with a constituent who is “too emotional.”

So I am sorry, Speaker Ryan, if you don’t like the way we’re talking. But we don’t like the way you’re governing, and we’re going to make you listen to what we have to say about it.

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Safety Net

The House Budget Thinks I’m “Wasteful Spending”

This morning, the House Budget Committee released their budget plan for fiscal year 2018. It’s filled with some of conservatives’ greatest hits—work requirements, block grants, cuts to programs that help low-income people—and it’s all couched in language about how the government needs to reduce “wasteful spending.”

The problem is, I’m a product of that “wasteful spending.” So is my dad. He was a character, and deeply embarrassing in the way that only dads can be. He was known around our small town as the chatty Starbucks regular who would talk to complete strangers for hours or as the old man riding a unicycle (on special occasions, he also juggled and wore a clown suit). At movie theaters, he would stand up and dance during the ending credits, while I quickly walked away so people wouldn’t see us together. He brought a camera with him everywhere, and took pictures constantly, while I attempted to hide my face behind napkins, or my hands, or anything else within arms’ reach. He still framed those pictures, whether or not I was visible—there was one in his bedroom where a volleyball eclipsed my entire head.

My dad was complicated. He was terrible with money. He ran his law practice on a barter system, trading legal advice and representation for furniture or housecleaning services or—in one particularly memorable instance—three swords.

He was also an addict. This was a surprise to virtually every person he met—myself included. I knew he spent time in rehab when I was five, but I still couldn’t quite believe it when—after ten years of sobriety—he relapsed and disappeared for two days during my sophomore year of high school. He came back, filled with guilt and shame, promising that it would never happen again. But it did happen again, so his wife left him. And then it happened again, and he lost his law practice. And again, and we lost our house. And eventually, it led to a new job working for Mexican drug cartels.

My dad’s story ended the way these stories tend to—he died. But not right away. First he was arrested, under drug charges that would have imprisoned him for 15 years. But after six months, the prison doctors ran some tests on a lump on top of his head. It turned out to be stage 4 melanoma. He was only supposed to live another three to six months, so he was granted a compassionate release from prison.

My dad lived for another 22 months after that—about four times longer than the doctors predicted. He died in the comfort of our home on the evening of October 25, 2010.

Those two years brought my father back to me.

Those two years brought my father back to me. He and I became closer than ever—reflecting on the days when his criminal nickname was “el abogado,” when the months he spent in solitary confinement briefly drew out aspirations of priesthood, when he convinced his high school principal to let him grow out a beastly-looking beard to take on the role of Jesus in the annual play, and when we both realized that forgiveness can be the most powerful experience in your life.

His epitaph reads, “Love wins.” Ultimately, it did.

I have always attributed the additional 16 months I had with him to a sense of hope and love brought about by my community. Distantly familiar faces came out of the woodwork to offer emotional support, to help cook his meals, to sit with him to make sure he didn’t fall, to help him shower, and even to pay for his funeral when my mom realized we couldn’t afford it. But I also owe those 16 months to Medicaid, which covered chemotherapy early in his illness and a home nurse when he was too weak to walk. I owe them to Social Security Disability Insurance (SSDI), which helped pay for our biweekly trips to Kerrville, Texas, for clinical trials of Ipilimumab. I owe them to Supplemental Security Income (SSI), which helped my mother—who was working day in and day out to support her ex-husband and their three children—put food on the table. Even after he died, Social Security helped my family stay afloat with modest survivors benefits that my dad paid into over the course of his career.

Medicaid, SSDI, and SSI were as much a part of the community that gave my dad a chance to die with dignity as the Starbuck employees who closed down the shop to go to his funeral. You have all paid into them during your lives, so that when my family needed them, they were there. Thank you for that.

I can never explain how much this support meant to me. But I can say I hope that it’s there for you when you need it. Because it is not wasteful spending. I was not wasteful spending. My dad was not wasteful spending. And you are not wasteful spending.

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Culture

The Coastal Elite Is Real. I’m Part of It.

There’s a thing that happens in any social movement where the people who are negatively impacted by something attempt to articulate the unquantifiable, and people with privilege pretend there’s no problem at all. That’s what privilege is: The state of being comfortable enough to not notice.

We are running into this problem with the word “elitism.” Editors who normally love my pitches won’t publish an article about it. If I use the word online, I will immediately be deluged with people arguing that there is no such thing at all, or that it’s a figment of the GOP’s imagination. Elitism is hard to prove, because it’s not an event. It’s a mood and a tone. It is an undercurrent, oft-mentioned and never examined. It is a thing that I know because I am myself elite these days, though I never was before.

Most people become elites after going to universities and putting in time in the trenches of D.C. or some media outlet; their status takes years to build. I hacked the system; I was a second-shift cook who wrote a cri de coeur that garnered worldwide attention, and just like that I was a critically-acclaimed author who is invited to lecture all over the world. It’s possible that many elites don’t understand just how set apart they are because they have never seen the juxtaposition. They might not understand what things look like to those who aren’t so lucky.

To be an elite is to be listened to and respected, to have autonomy, to think that your life and your work might be remembered by history. For me, it was obvious when I tipped over that line: I count national politicians in three countries amongst my friends, and if I am curious about something I can simply dial up an expert and know that my call will be taken.

Progressive circles are still not equipped to wrestle with imbalances of political power.

That’s what power looks like now. Power is social capital that I trade on to build the networks that I need to get more social capital that I can trade for more power. That is the nature of the game, and you need an invitation to play.

Progressive circles are still not equipped to wrestle with imbalances of political power. If you ask someone on the left to explain racism or sexism or homophobia, they will be able to expound at length about how we must listen to the people who are impacted, and how those with the upper hand in any given situation must try to identify and mitigate systemic imbalances. Ask about elitism—about inequality in access and cultural power—and people have a harder time articulating it.

Consider it through the lens of the disruption that I had in my life. There are my old friends, the ones I swapped shifts with: low-income, disabled, unemployed, high-school graduates struggling to make ends meet. Then there are my new friends, the ones I made when I was elevated: politicians, household-name pundits and writers, deans of upscale schools, Hollywood stars. For me, the question of social capital is really that stark. There is Before, and After.

When I talk to my old friends about the problems of the nation, it is always personal and immediate. Will needed services like heating assistance or low-income health insurance be cut? Will I be able to keep my job if I don’t have a child care credit? Will we still have the home health nurse that takes care of my mom when I can’t be there? With my new friends, these problems are real but also somehow theoretical. Millions of people are at risk of losing these things, which everyone agrees is awful. We talk about who we might call to lobby, or what organizations are good soldiers in the fight.

It boggles the mind that people cannot see a difference in those two kinds of conversations, even as they bemoan the terrifying increases in inequality in America. I still feel an ancient rage building in my chest when I see someone on TV telling the viewing audience—most of whom will never be invited to be a pundit—that any cultural divide is the sole fault of nefarious right-wing populists.

There absolutely is such a thing as toxic elitism.

I’m calling bullshit. I hear the jokes and the asides and I am here to tell you, there absolutely is such a thing as toxic elitism. It’s in the comments about how people need to be told how to vote in their own best interest, without questioning why so many people don’t have the information to judge for themselves. It’s in the constant draining refrain of “why don’t people get more involved in the process?” as though we’ve designed a process and system that would allow for that.

My complaint isn’t that elitism exists. It’s that we’re pretending it doesn’t, and defending the instances that we can’t ignore as meritocratic. People tell me that I am an embodiment of the American Dream, having been discovered one day and elevated to success beyond my imagining. But a world in which an average bright young person has to wait for a book deal to access social capital or a promising career is more like a nightmare, and our democracy can’t afford it much longer.

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Safety Net

Dear Senators: I Took an Oath to Do No Harm. You Should, Too.

Dear Members of the U.S. Senate,

My name is Samantha and I have been a pediatrician for exactly 360 days. I work in Southwestern Virginia, for a hospital system that also provides care to underserved parts of West Virginia and Tennessee. We mainly work with struggling families that rely on Medicaid to provide health care to their children. That means, at this exact moment, you are debating a bill that would directly impact the children that I took an oath to serve.

I could tell you countless stories of medical crises averted, serious illnesses cured, chemotherapy administered, and families counseled through the parts of parenthood that they often did not anticipate. But you are all intelligent people, and you can imagine these scenarios for yourselves. Even if you can’t, I’d hardly be the first to point these stories out.

Instead of telling you about what it means to have health care, I want to talk to you about what it means to have health insurance. I want to talk to you about what it means to a parent to worry that they can’t afford the treatment their child needs—and to know, deep down, that they might bankrupt themselves trying to keep their child safe.

First, I want to talk to you about the provisions of your bill that would chip away at coverage for people with pre-existing conditions. Last week, I had the privilege of meeting a young woman and her mother in our clinic. The mother had a heart condition that is often passed genetically from parent to child. As she and I spoke about definitive testing that would tell us if her daughter carries the gene that might cause her to develop the same condition, she started to get nervous.

She was afraid that this test, which could help us treat and protect her daughter, was a medical Catch-22. Without it, we wouldn’t know how to care for her daughter. With it, her daughter might be labeled as a person with a pre-existing condition, which could make her unable to afford the care she needs. And it was all based solely on a tiny gene that has not yet even made her sick.

Parents can no more risk the well-being of their ill children than walk on water.

Even as we told her that her daughter’s heart is currently perfectly healthy—news a mother should get to receive with untainted joy—I could see her eyes fill with tears. She told us that she had been unable to get insurance coverage until recently, because of her heart condition. Insurance companies even resisted covering her children, based on the risk that they may have inherited her heart condition, despite the fact that none of them had been diagnosed.

If you pass this bill, the children who lose their insurance will still come to my clinic. Their parents will bring them even if they aren’t sure how they’ll pay, and even if they know deep down that they can’t. Parents can no more risk the well-being of their ill children than walk on water.

The doctors, nurses, and therapists I work with will still care for these kids when they come. We’ll do it even though medicine is a difficult career. We’ll do it even though it requires sacrifice and emotional risk to care so deeply for these tiny people who need us. We’ll do it not only because it is legally required of us, but because of the little pieces of our souls that our patients have come to inhabit.

I’ll do it for days like today, when I get to see a boy I have cared for since he was a newborn take some of his earliest steps and wrestle through his check-up like it was a game. I do it for the incredible growth I have witnessed in his mom and dad: a young, at-risk couple who have become thoughtful and loving parents over this past year. I do it for the moment when the baby stops pulling on my stethoscope just long enough to give me an unprompted hug, or when I give him a high-five for doing a good job and he gives me high-fives over and over until I absolutely must move on to my next task.

I am asked to give these children the care they deserve, and to do right by them and their families. In return, I get these little gifts now and then. Small rewards for living as “men and women for others”—the core belief instilled in my medical school classmates and me at our alma mater.

I like to think that you all became representatives of the American people with a similar goal—to be “men and women for others.” I like to imagine what our nation might become if lawmakers such as yourselves did your work by the same principles that guide us as caregivers through each day.

I would hope that you choose to live by at least one of our principles, known in ethics circles as non-maleficence. You might be more familiar with its colloquial phrasing, “First, do no harm.” With this health care bill, you hold the futures of millions of Americans in your hands. Please, if you keep nothing else in your heart as you vote in the upcoming days, think of your constituents and hold close the aspiration to “first, do no harm” to those who are depending on you.

 

With my sincerest thanks,

Samantha Cerra, M.D.

 

Editor’s note: Some identifying details have been changed in order to protect patient privacy; however, the essential content and experiences represented are recounted faithfully.

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